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Transcript of October 30, 2000 NCVHS Joint Workgroup Meetings on National Health Information Infrastructure and Health Statistics for the 21st Century

[This Transcript is Unedited]

National Committee on Vital and Health Statistics

Meeting of Work Groups on:




October 30, 2000

Canterbury Hotel
750 Sutter Street
San Francisco, California

Reported By:
CASET Associates
10201 Lee Highway, Suite 160
Fairfax, Virginia 22030
(703) 352-0091



CHRISTINA BETHELL, PhD, MPH, MBA, The Foundation for Accountability, Portland, Oregon

E. RICHARD BROWN, PhD, Director, UCLA Center for Health Policy Research, Professor, UCLA School of Public Health, Los Angeles, California

MARY M. CAIN, MPH, Director, Health Care Horizons, Institute for the Future, San Francisco, California

JAMES ALLEN CROUCH, MPH, Executive Director California Rural Indian Health Board, Sacramento, California

JONATHAN E. FIELDING, MD, MPH, Director of Public Health and Health Officer, Los Angeles County Department of Health Services, Los Angeles, California

REED M. GARDNER, PhD, Professor/Chair, University of Utah, Department of Medical Informatics, Salt Lake City, Utah

PETER I. JUHN, MD, MPH, President and CEO, Care Touch, Inc., Concord, California

STEVEN LANE, MD, MPH, Medical Director of Health Information Management, Palo Alto Medical Foundation, Palo Alto, CA

PHILIP R. LEE, MD, Consultant Professor in Human Biology Program, Stanford University, Stanford, California

KATHY MC CAFFREY, BS, MA, RHIA, Vice President Health Care Data and Operations, California Association of Health Plans, Sacramento, California

BLACKFORD MIDDLETON, MD, MPH, MSC, FACP, Chief Medical Officer, Medscape, Inc., Hillsboro, Oregon

RITA MOYA, MS, President and CEO, National Health Foundation, Los Angeles, California

LINDA NEUHAUSER, DrPH, Faculty School of Public Health, University of California Berkeley, Berkeley, California

MICHAEL L. RODRIAN, Chief, Center for Health Statistics, State Registrar for Vital Statistics, California State Department of Health Services, Sacramento, California

DAVID SOLET, PhD, Assistant Chief, Epidemiology, Planning and Evaluation Unit, Public Health, Seattle and King County, Seattle, Washington

P R O C E E D I N G S (9:10 a.m.)

Agenda Item: Welcome and Introductions.

DR. LUMPKIN: Good morning. If we can get started now, my name is John Lumpkin. I am chair of the National Committee for Vital and Health Statistics, and pertinently, chairing the work group on the National Health Information Infrastructure.

I have to start out with an apology. When I took the flight from Chicago yesterday, I left some important things behind.

It would seem like one of those kinds of trips where you forget everything. I left my phone in the van coming from the airport. I left my upgrade certificates when I was going to the airport.

I had a document to read on the airplane. I left that at home. I also seem to have left my voice somewhere. It has just been one of those kinds of trips.

I hope if you will bear with me, we are going to make a few little changes because of that, in how we are going to go through the meeting.

The first thing that we have to do is go around the room and do introductions.

Just so that everyone knows, because we are going out live and simultaneously over the internet, it is important for people, when they talk, to identify themselves, so people can know who is talking. That is part of the introduction.

We will start to my right. Jeff?

MR. BLAIR: I am Jeff Blair, vice president of the Medical Records Institute, vice chair of the subcommittee on standards and security and a member of the committee, and I am very happy to be here.

DR. COHEN: I am Dr. Simon Cohen. I am the national director for health information policy for Kaiser Permanente, and a member of the committee.

DR. DEERING: I am Mary Jo Deering from the Office of Disease Prevention and Health Promotion in HHS in Washington. I am the lead staff for the NHII work group.

DR. STEINDEL: I am Steve Steindel from the Center for Disease Control and Prevention, and staff to the NHII work group.

DR. HENDERSHOT: I am Jerry Hendershot from the National Center for Health Statistics, and staff to the health statistics vision for the 21st Century.

DR. WEINZIMER: I am Rob Weinzimer, chief of the data dissemination branch at National Center for Health Statistics, and part of the team helping to plan these hearings.

DR. LANE: I am Stephen Lane. I am with Palo Alto Medical Foundation as a medical director of health information management.

MS. CAIN: My name is Mary Cain. I am a director of health care for Health Care Horizons at Institutes for the Future.

DR. NEUHAUSER: I am Linda Neuhauser. I am on the faculty of the school of public health at UC Berkeley. I am also executive director of the Center for Community Wellness.

MR. RODRIAN: I am Mike Rodrian from the California Department of Health Services and the Center for Health Statistics.

DR. STARFIELD: I am Barbara Starfield from the Johns Hopkins University, a member of the committee.

DR. MIDDLETON: I am Blackford Middleton. I am the chief medical officer at Medscape

DR. JUHN: I am Peter Juhn, CEO of Care Touch, Incorporated.

DR. GARDNER: I am Reed Gardner from the University of Utah and LDS Hospital in Salt Lake City.

DR. ZUBELDIA: Kepa Zubeldia, member of the committee and with Clarity, a new venture I am starting. Two weeks ago I was with Envoy Corporation.

DR. FRIEDMAN: I am Dan Friedman. I am with the Massachusetts Department of Public Health. I am a member of the committee, and I chair the work group on the 21st Century Health Statistics Vision.

DR. SONDIK: I am Ed Sondik. I am director of the National Center for Health Statistics.

DR. LUMPKIN: At this time, we are going to ask the people sitting around to introduce themselves.

MS. JACKSON: I am Debbie Jackson with the National Center for Health Statistics. I staff the National Committee on Vital and Health Statistics.

MR. JOPE: My name is Brad Jope. I am from the Office of Inspector General, here to observe.

MS. BRIGHTMAN: Lisa Brightman from the National Center for Health Statistics. I have been part of the staff of the vision for the 21st century statistics project.

DR. SOLET: I am David Solet. I am from Public Health Seattle and King County.

DR. LUMPKIN: Which office of the Inspector General?

MR. JOPE: Health and human services.

DR. LUMPKIN: We just wanted to know which one of us should feel paranoid.

DR. LEE: Phil Lee, professor of human biology at Stanford and also an emeritus professor at the School of Medicine UCSF, and a senior advisor at the Institute for Health Policy Studies, UCSF.

MR. LEE: Paul Lee, I am a private consultant in internet health care technologies.

MS. MOYA: I am Rita Moya, president and CEO of the National Health Foundation.

DR. LUMPKIN: Thank you all and welcome. What we are going to be doing here today, and then I am going to toss it to Dan, who has agreed to pinch hit a little bit for the introduction of the NHII, we have a hearing of two work groups of the National Committee for Vital and Health Statistics, the work group on national health information infrastructure and the work group on health statistics for the 21st Century.

These two work groups represent a major endeavor by the national committee, as we are trying to set a vision for the nation as we begin to approach our health information policy.

At a recent meeting, some of our long range and strategic planning were confirmed at the last meeting of the national committee.

We realized that it was very important for us as a committee to balance and integrate the two major tasks that we have.

One task is directed by Congress, which is getting to the very specifics of setting standards for health information policy.

Most notably, the recent adoption in August of the first set of the HIPAA rules, dealing with transactions.

The other mission, which the committee has had for a much longer period of time, is to really pay attention to the population based information challenges that we face in this nation, as we try to better drive ourselves toward health in a broad sense.

What these committees are working is a way to integrate those two visions, of population-based prevention and population-based data collection to meet our goals, as well as the standards based approach.

So, the work of these two work groups will be closely integrated in future works and activities of the overall committee. Dan, if you would, thank you for pitching in. My voice is just about gone.

Agenda Item: Overview of the Interim Report, "Toward a National Health Information Infrastructure."

DR. FRIEDMAN: John has a wonderful presentation that any of you who haven't seen it, or for those of you who haven't seen it, I hope you get a chance to see it, a wonderful presentation on the national health information infrastructure.

It actually always makes me a little bit nervous to see it. It prominently features, first, the panel of a 747 and then the panel of the 747 with all the switches blanked off.

Whenever I see it, I start worrying about what my flight home is going to be like. At least I am spared that.

The national health information infrastructure is the National Committee on Vital and Health Statistics' attempt to try to define what a possible future for health information in the United States could consist of.

We are purposely starting out with as broad an integrative notion of health as we can, a notion of health not as disease and not as the absence of disease.

We are starting out with that, knowing that our current health information systems don't do a very good job of portraying health.

We envision the national health information infrastructure, not as a centralized data base, and not as a set of data bases but rather, as is defined in the interim report, as a set of technology, standards, application systems, values and laws, that support all facets of individual health, health care and public health.

The broad goal of the NHII is defined in the interim report. It is to deliver information to consumers, when and where they need it, so they can use this information to make informed decisions about health care.

The NHII as we conceive it consists of three interrelated domains, a personal health care domain, a provider domain and a community health domain.

What we are -- this is the second of four regional hearings that we are undertaking. What we are particularly interested in is trying to obtain input on how we overcome the barriers from where we are now to moving toward the national health information infrastructure.

In our view, those barriers are not technological, but rather, revolve around a set of other non-technology -- some of them are more technology related issues, but many of the issues are not technology related.

What we are particularly interested today is getting your input on how we move from here to there, how we get input on how we overcome barriers.

DR. LUMPKIN: Thank you. I think to sort of expand on that a little bit, imagine that you were in our place.

You have written a report which, at the first hearing we heard everyone comment on, gee, that is a great vision.

Imagine that you were in the position of giving advice to the Secretary of HHS to make that vision happen. That is the kind of recommendations we would like to hear.

We have our first panel. I will ask them to introduce themselves. We will start with Peter.

Agenda Item: Panel 1.

DR. JUHN: Yes, I am Peter Juhn. I am CEO of Care Touch, Incorporated, which is a new start-up company incubated, in part, by Kaiser Foundation Health Plan.

Our focus is really how to provide information and decision resources to consumers to help them better interact with the health care system, and especially those elements of the needs of their care that are not covered by traditional health insurance.

DR. GARDNER: I am Reed Gardner. I am professor of medical informatics and department chair of informatics at the University of Utah, where we have approximately 60 graduates.

Now, about half of them are physicians getting master's and PhD degrees in informatics.

I also serve as a co-director of medical informatics, medical computing at LDS hospital, where I spent the last 30 years working at gathering data from clinical information systems.

DR. MIDDLETON: Again, good morning. I am Blackford Middleton. I am the chief medical officer at Medscape, and I am associate professor of medical informatics and outcomes research at the Oregon Health Sciences University.

I am a practicing physician using a component of the national health care information infrastructure called the electronic medical record, and I am sometimes a patient of physicians using the same technology.

DR. LUMPKIN: We are going to start with Peter's presentation. Then, after the three panelists present, we are going to ask you to field some questions from the committee. Thank you.

DR. JUHN: Let me just begin by thanking the committee for having me here today. My perspective is probably a little bit different than maybe the perspectives around the room, partly because I am trying to get an internet e health company started today, given where the market is.

So, I am either very foolish or I actually think I see something that others don't.

Let me just begin with some impressions that I have of the report. Then I will get very quickly into I think the two charges that we had.

One was to identify some of the barriers and then to offer some recommendations to the committee.

The impressions of the report, number one, it is a very impressive breadth of coverage. I think you have really gone from kind of the alpha to the omega of all the different items that really need to be included in a health care information infrastructure.

The second is that it identifies many, if not all, the relevant issues that are really critical to making this vision a success.

The third is, it clearly is organized around three very important key stakeholders. The first -- and I do like the order you put these in -- is the consumer/patient, the second is the provider, and then the third is the community at large.

The fourth impression that I have is that it recognizes, I think, in the report, I think three essential facts of today.

Number one is that the internet is here to stay, that this is not a phenomenon of five, six years ago, when we were kind of discussing whether the internet was real or not real, to really saying that the internet is, in fact, a fact of life today.

That leads to the second fact, which is that the internet will have profound impacts on health care, so profound that it may even revolutionize the way we think about health care delivery.

Then the third fact that you acknowledge is the fact that the health care delivery system is not optimally functional at this point. That is actually kind of the nicest way I can put it.

I think the report does, I think, a very nice job of recognizing those three facts.

I think on the more kind of problematic side, I think the report presents a vision, but it doesn't really present a game plan.

I think what the last eight months of my life, especially being an entrepreneur, has told me is that it is fine to dream, but dreams are very hard to eat.

You really need to have some game plan in terms of how you get from where you are today to getting to the destination.

The way I look at this report, I look at it as a postcard of the destination that we want to get to. What is not clear is, in fact, how we get to that destination.

Also, I guess the other kind of more problematic element in the report is that, even though you do include the key stakeholder groups, I think there are several important groups that are not mentioned or are not really described in any great detail.

These groups include insurance companies and managed care organizations. They include the managed health care industry, i.e., pharma and other medical device manufacturers, as well as other, let's say, communication technology-based companies.

Then, one very critical group that is not really mentioned here is the employer group. I think the employers, in many ways, even though they are out of the public spotlight when it comes to health care policy making, I think behind the scenes exert a considerable influence in what actually gets done and what doesn't get done in health care.

Nonetheless, I think this is a very impressive beginning. Let me just offer several of my own perspectives of the health care system today.

I think it is a system that really is living a paradox right now. On the one hand, there are many elements that have really put it into disarray.

The first of these is just rising costs, second is rising dissatisfaction among many of the stakeholders that you mentioned in the group, namely patients and providers as well as employers.

There is a growing distrust of institutions, including the medical profession, as well as kind of the traditional hospital institutions.

There is also a very significant impact of very strong interest groups that have prevented comprehensive reform in the past, and I think may, in fact, stand in the way for not only comprehensive reform, but also the establishment of a true national health care information infrastructure.

This is a paradox. Against this array, we in the states have the greatest arsenal of weapons ever in history to combat disease, disability and illness.

There is also global leadership in the biotech industry, the genomics industry, and just health, if you will, of our medical research enterprise.

There is an increasing array of choices and information kind of sources, if you will, for patients today.

My personal belief in health care is that we need to press the reset button. I think many of you have had some encounters, if you will, with your electronic gadgets of one sort or another where you have to actually resort to pressing the reset button.

I think the reset button here in health care is, we need to go back, if you will, to the first principles of the health care system.

Namely, the core transaction in health care is really the patient with a need, and how we build structures and institutions around solving or providing solutions to that need.

Let me move on to I think the first question that we were posed, which was the financial and operational barriers to implementing NHII.

Let me just object to just that phrase itself. I really object to the term barriers. I think we need to think of these as challenges. That may also be because, as an entrepreneur, we never have barriers, we only have challenges.

I would actually suggest to the committee that you actually remove the word barriers and really think of it more as a challenge.

In thinking about these challenges, there are four key questions that occur to me. The first is, who is going to lead the development of this road map to this vision.

I think leadership is very important here. Leadership is not just a question of convening meetings and getting ideas and creating, if you will, the rhetorical flow.

Leadership really is demonstrating some courage in terms of identifying an end point and asking the question, how best do we get to that end point, even if there will be some winners and some losers, and really having, if you will, the persistence to get through really the very turbulent waters, especially political waters, that it would take to get to the destination.

The second key question is, who is going to participate. So, even of the three stakeholders that you mention in the report -- and several of the stakeholders that I mentioned were not in the report -- how is it that the committee will actually get the input from these stakeholders.

One physician's input is one physician's input and they really don't speak, if you will, for the larger profession.

In a similar fashion, one consumer's input is one consumer's input. I guess one of the other key questions is who is going to participate and how will you identify that participation.

A third key question is, who is going to pay. This is not a trivial exercise. In fact, I think there have been several studies that have been published that, to really get to a vision that we are kind of imagining, that we are talking anywhere from $200 to $500 per person as an investment that will be needed to actually build out all of the portions of this infrastructure.

So, the question really becomes, who is going to pay. Is it going to be the government, is it going to be the consumer, is it going to be the insurance companies.

Is it going to be those people who today are benefitting from the current health care system, i.e., the pharmaceutical companies and medical device companies that are enjoying 30 to 40 percent margins.

I think that is a very critical question, who is going to pay. For that payment, what will they get. Will what they get actually lead to the benefits that we are envisioning.

Then the fourth key question is, who is going to execute. Who is going to do all the things that are necessary to be done.

I know at the beginning here we had commentary about some of the analogies to the airplane industry. I think where we are right now, we have just made a visit to the travel agent, and the travel agent has shown us some nice postcards of where we want to get to.

For us to physically get from where we are today to this destination on the postcard requires an incredible amount of execution.

If you think about that 747, hopefully with the instrument panel in place, you can just imagine all the different execution steps that it will take to get us to the destination.

I think for me, those are the four key questions that I think pose very significant challenges to the committee, but also to Americans at large.

Let me mention a couple other challenges as we see them. One, what is the specific incentive to all the various stakeholders.

What this translates to is, what is the business case here. Meaning, if there is going to be a value proposition, if there is going to be give me a dollar now so there is a benefit later, what does that equation actually look like.

Then the other, I think, key barrier that I see facing both this committee, but just kind of the medical system at large or health care system at large in America is, what are the incentives.

What is going to motivate the various stakeholders to behave in the fashion that is outlined in the report.

Those are, at least from my perch, some of the things that I see as barriers -- sorry, challenges -- to getting this accomplished.

So, recommendations, the first recommendation is, building off those four key questions, describing a business case to each of the stakeholders and really asking the question, why is this national information infrastructure in health care vital to the success of you as a stakeholder.

The second is, spending some time taking a very deliberate, yet speedy approach, to delineating a path, a road map to the destination.

As I see this, the analogy that I like to think about, imagine that you are in the forest and there is a stream ahead of you.

On the other side, on the other bank of the stream is this nirvana that I think we all agree to. The question is how do you get there.

I think there are, at least in my thinking, at least three ways to get there. One is that you walk backwards from the side of the bank that you are on and you try to leap over the stream, much like Carl Lewis might do, or some of the more enterprising e health entrepreneurs of a couple of years ago.

The second is that you might start wading into the stream, hoping that you can wade across the stream. In fact, this is the approach that many current health care institutions have taken.

What they have discovered is that the stream is deep, the waters are moving pretty quickly and it is actually pretty cold in there, and many of them turn around and head back to the original side of the bank.

The third approach is looking up and down on that stream to see where there are boulders and rocks that form a natural bridge across that stream.

What that takes is some deliberate action identifying what those boulders are and taking very careful, deliberate, and yet still speedy steps across those boulders to the other side.

The other recommendation that I have for this committee especially is to take a leadership position. You have already set the vision, but you need to also set some expectations of the various stakeholders that are going to be involved and the various participants.

I think the most important thing here is to move forward. I think these hearings are good. I think it is very important to get lots of input.

At the end of the day, it comes down to some person some place having the courage to actually make the difficult decisions and move this enterprise forward.

The last recommendation that I have is, as this committee and others begin to explore how best to achieve this vision, I would very seriously consider private public partnerships.

This is not an activity that will be successfully achieved just through government efforts alone. I think there is something to be had for the entrepreneurial start-up culture that could infuse an activity like this.

Then let me just close by describing for you, in fact just stating for you, the quote that you use in your own report, shaping a vision for the 21st Century health statistics, which is from George Bernard Shaw.

I dream of things that never were and ask, why not. That, I guess, is my last recommendation. Thank you.

DR. GARDNER: Thank you for the opportunity of being here. Let me just show you where we are and where I would like us to be.

Even within our own institution of Intermountain Health Care in the Intermountain region, it is very, very difficult to make these things happen.

I have worked with the system for 30 years as kind of the health system. That system gathers data from a whole variety of places, automatically puts it in the record, stores that data so we can do integrated decision making from the system.

I was at the veterans hospital in Salt Lake City just a week ago today looking at a computer that is an excellent computer system and was looking at vital signs.

Those vital signs were hand entered by a nurse, rather than coming from a bedside monitor. As I looked down this wonderful spread sheet of vital signs and data that people could quickly and easily review, was a temperature of 37.1, then 99.6, then 37.2.

We plotted the data beautifully on the screen and, as you imagine, it went down and up like that, which had no meaning.

So, we have come from a world that is strictly free text and we need to get to a world that is very highly structured and organized so that we can use the system to do decision making.

Can you imagine what a decision making algorithm would do with that? Of course you can say, well, we will compensate for that. If it is anything above 50, we will say that certainly must be degrees F.

That isn't where we ought to be. We ought to have standards, we ought to have structure, we ought to have organization.

So, your push to develop standards is certainly strongly supported from my side.

This just shows the infrastructure in a critical care unit, a nurse at the bedside. There really is a patient down there, the bedside monitors, the IV pumps, ventilators and a computer at each bedside.

Now, one day that will all have one screen to display the whole thing, perhaps, but I would show you now that the ventilator screen now has two computer screens on it.

I have nurses who complain to me, Dr. Gardner, why do we have to read data off this screen and enter it into that one.

We need to set up interfaces and standards so that we can do that more easily. We have tried. The process is very difficult. It is a very long-standing problem.

Anything that your committee could do to help us set up standards to do the data input, which is the hardest single task that we have to deal with, would be greatly appreciated.

Everyone loves to review data. Everyone hates to enter the data. Al Pryor, who is one of my colleagues, says that everyone wants one screen to display everything they want to see, and one button push to do everything they want to do.

I will show you an example that gets almost at that as we go along.

Two examples of using the system for this, it was clear, from animal studies, and then from our own data, using data from this help system, we said, when is the best time to give patients antibiotics.

So, we are using the health system as a public health device, if you will. We went back and looked at the data and found that if you gave the antibiotic just before the incision for surgery, that was the best time to give it.

If you gave it too early, the infection rate was higher. If you gave it too late, the infection rate was higher.

How do you make that happen? We told everyone this, and yet, nothing happened, until we put a simple little notification on the surgical schedule that said an antibiotic should be given.

We then went from about 60 percent compliance to well over 99 percent compliance now, and our infection rates have gone down dramatically.

This isn't a technology problem. This is a communications problem. We have to be able to integrate systems. We can't integrate systems unless we have got standards.

Does it make a difference if a patient gets an infection? Again, this is a public health use or a statistical use of the data.

We found that you have got a six times greater chance of dying if you get an infection following a surgery, that there are five days greater length of stay and it costs about $5,000 more, clearly an incentive to prevent the infection.

We then went -- this is a case where we have got one screen that pretty much displays everything. As you can see, it is quite busy.

It tells us who the patient is, what room they are in, their gender. Abdominal sepsis was their diagnosis.

The maximum white count was 21, the maximum temperature is 38.7. It has gone up a bit. Then the computer makes a recommendation as to what antibiotics should be given.

These data, if collected by humans, take roughly 15 minutes to gather. The computer gathers it and presents it in roughly 10 seconds.

You can only do this if you have got structure in the data base, if you have got standards.

We have now moved this out to other hospitals in our corporation, but it is very difficult to do, because the definitions are different, structure is different, and we have had to go back through and pay a huge price to do simple things like this, an explanation of what is in the record, some things about cost.

Computerized antibiotic assistant took only about three-and-a-half seconds to gather all that data and present it. It takes humans about 15 minutes.

Antibiotic allergies decreased from 13 percent to six percent. Adverse drug events decreased from two-and-a-half percent to .7.

The excess doses decreased. The mismatch between known susceptibilities decreased from 18 percent to two percent, and time they were on antibiotics for too long went from 5.9 to 2.7 days.

With that capability, we were able to reduce antibiotic use, reduce mortality, reduce adverse drug events and reduce costs, 42 percent reduction in cost.

We can do that because we have structure and standards. If we don't have those -- you have made that recommendation in your report -- I think you need to be even more aggressive with that, and push the envelope forward, so that we do have standards, so that we can share data not only within our own institution and own enterprises, but across institutions within our community.

I spend half of my week at the University of Utah and half at LDS Hospital. They are two competing organizations.

I kid that they each have helicopter service with sidewinder missiles and whichever shoots the other one down gets their first, picks up the patient.

I have halfway serious about that. It is almost impossible to share records across those two institutions, which is a tragedy.

Adverse drug events are a problem . We first looked at our adverse drug event rate a little over 10 years ago. We found we only had nine adverse drug events in our 425-bed hospital for the whole year. We just felt so good.

We then used the computer to look for identifiers, like an antidote being given and some other things. The next year we computerized it and the adverse drug event went up to 373.

As you can see, it went up even further than that. The thing is, with the tools we were using and the reporting mechanisms that we had, we weren't reporting the adverse events that needed to be reported.

We now can find them. We can find them more quickly. We can know the things that can be done to prevent them.

Does it make a difference if you have an adverse drug event? Yes. You have got about a three times greater chance of dying.

You spend two more days in the hospital and it costs $2,000. I don't want to have an adverse drug event in a hospital.

Now, the issues are complex. The Institute of Medicine's recent report, To Err is Human, really, if you look at these, I think there are 43 different things that we have outlined, and there are probably another 20 that are important that would cause an adverse drug event.

To do all these things, we have to have standards. We have to have things in place so that the physician entering the order, the transcription process and all this works. We don't have those standards in place that are easy to use today. We need them.

So, adverse drug events are a problem. I think I have convinced you of that.

Then I would just take a look at some things that some folks in Manchester England did a couple of years ago, as they looked at the change in the information systems.

They looked at where we are and where we want to be. These are their gaps. These are their jumps.

Information, I have talked about that, the information we need to make these decisions. The VA hospital system is an example of how not to do it.

Technology, the technology isn't the main problem. In fact, I tell my first year graduate students that this business is 80 to 90 percent politics and sociology and 10 percent technology.

Processes, the way we are currently doing things and the way we want to do them, you know, I wish we could just pull the rug out, start over with medicine. I think we could do a little bit better job.

We can't. We sort of stepped into the world. This is what it is now, and we have to change some processes. There are some key processes that need to be changed.

Anything your committee could do to make a more structured process with nursing and physicians would be a tremendous help.

Objectives and values. I walk into our emergency room and they say, we want to computerize. I talk to five different physicians, guess how many strategies I get? Six. It is very, very hard.

We need to, I think, provide some training in the process of how do we set objectives, and we need to establish, what are the values.

I can present to you these values. I presented them to our hospital administration and they said, hey, Reed, we are in competition with somebody else in the community and we are spending two tenths of a cent more on computer systems. We are spending too much. The other system does only discharge, transfer and laboratory things.

So, we need to establish some better ways of valuing these things. I have tried for 20 years. That is a very, very difficult thing to do.

Having you as a committee and those in the field help us with establishing value would be great.

Staffing and skills of people, we put a system in labor and delivery. The largest single problem we had is that we had nurses who didn't know how to use Windows. We even had a nurse that had never typed on a typewriter.

So, we have to provide staffing and skills for people. Management and structure are important.

Many times we have gigantic gaps between what is the current reality and what people think should be. If there is anything that your committee could to do help with that, that would be tremendous.

For me, the two things that I would push are establishment of standards. The patient identifier, I know that is a huge one.

I can tell you that I am in our system as Reed Gardner, Reed M. Gardner, Reed McArthur Gardner, and Rulon Gardner, the wrestler from Wyoming, his father's name is Reed.

I don't look like him, so I think you can tell I am not the same guy. But there are four Reed Gardners in the Salt Lake City area in addition to me.

Being able to identify them and cross those records would be a tremendous benefit to me and the computing business.

If I go from one hospital to another, I want to be able to take my record. I want it in machine readable form, structured so that we can do decision making from it.

You are going in the right direction. I applaud you for that. Push it. Push the identifier thing. I know it isn't popular, but we have got to have some sort of common identifier. Thanks.

DR. MIDDLETON: Good morning. Blackford Middleton. It is a great pleasure and honor for me to present, once again, to the working groups of the National Committee on Vital and Health Statistics.

I am particularly honored to be asked to testify before you, the members of the work group on the national health care information system and the work group on health statistics for the 21st Century.

The intersection of these two areas lies at the heart of my own professional interests. I received graduate training in medicine, chronic disease epidemiology and health services research, focusing in medical informatics.

Our work now focuses on improving the abilities of health care providers to manage individual patients, as well as populations of patients, linking practice at the point of care with electronic records, and allowing health care consumers to play a greater role in their own disease management and wellness through the shared on-line electronic record.

Prior to joining Medscape, my academic research focused on clinical decision support and expert systems. At Medscape, I am the chief medical officer, responsible for providing guidance and oversight for all clinical issues in our software products and services.

Just a word about Medscape. We are a vendor of clinical information management tools for physicians and patients, a provider of health care information for professionals and patients, and a provider of a variety of online services, including next-day medical conference summaries, peer reviewed content, accredited CME and online health records.

We are devoted to improving the health care experience for providers and patients through the use of the digital health record technology at the point of care, a very small piece of the national health care information infrastructure.

After 15 years of work, we now have in excess of 30,000 clinician users of our technologies, including electronic medical records, our Medscape mobile product and transcription services.

These clinicians have created in excess of 15 million records on line. We have several thousand patients now using, the consumer channel to the secure online health record.

My objectives for today are to, first, provide commendations for a job well done in producing the two reports, the interim report, Toward a National Health Information Infrastructure and A Vision for 21st Century Health Statistics.

Both provide an excellent vision into critically important areas of the U.S. health care delivery system.

I will first share with you my reactions to the report, describe relevant aspects of our work at Medscape pertaining to the reports.

I will then describe the barriers and end result issues as I see them, and present some possible tactics in closing, which might help us create forcing functions for development of the NHII.

First, in reacting to the reports, I think the visions outlined in the reports are very consistent with my own work and the work of Medscape.

We agree that critical issues remain to be solved in protecting the privacy of personally identifiable health care information.

Critical standards need yet to be developed to ensure secure interoperability between health care information systems.

The recognition of information as both a private resource and a public good lies at the center of critical issues surrounding the use of health care information for care delivery, health maintenance, health care operations, medical research and maintenance of the public health.

The report correctly identifies challenges yet to overcome with respect to the cost associated with building out the NHII, and correctly characterizes the NHII as a necessarily heterogeneous system of systems to support clinical information management broadly.

In our work, we agree that there are three different dimensions to clinical information management. Our product is analogous to the personal health dimension as described in the report.

With this tool, patients can see certain aspects of their online health record, and communicate with their health care providers or their proxies.

The health care provider dimension, of course, is analogous to the notion of an electronic medical record or a digital health record.

Whether it is delivered in client server technology within an enterprise or through new internet-enabled ASP models, this gives the provider a means to capture clinical documentation, access tools for medication administration, formulary compliance, outcomes reporting, clinical communications, as well as integration with a variety of knowledge-based tools at the point of care.

The community health dimension is analogous to our online reporting environment, although as it is described in the interim report, it goes far beyond what we have been able to accomplish to date.

So far, we allow users the ability to report upon their own patient populations and to assess their compliance with national standard guidelines of care.

Soon, they will provide the end user the ability to contrast their own experience against the experience of similar or reference populations.

We have not yet integrated data from sources beyond the systems typically interfaced to computer-based patient records, such as the hospitals, laboratories, transcription, et cetera.

I look forward to the day when the core content in the community health dimension as described in the report is available to users of electronic health records at the point of care.

Such population statistics and insights would be very valuable to each and every clinician. For example, access to community-wide microbial sensitivity information at the point of care could be extremely helpful.

The current reality, however, is far different than the vision described in the report. Why is the penetration of electronic record technology so low in the marketplace?

The lack of sufficient technology standards to the cost of health care delivery systems are usually identified as the culprits.

However, even with today's basic interoperability standards, basic information exchange between systems is feasible.

More sophisticated interoperability may require additional syntactic and semantic messaging standards, but a huge amount of information may be exchanged between systems today.

By and large, the reason that penetration is low is that, while physicians are often called upon to make health care information technology investments, they are capital poor in the current health care environment.

Certain hospitals and integrated delivery systems have capital for such investments, and clearly they are investing in health care information management technology.

New models for delivery health care information markedly changed the investment dynamic from one of a capital-intensive outlay to a subscription software model.

This change is positively affecting technology adoption rates.

The second major reason that health care information management technology is only slowly being adopted is that the market forces that would benefit from such technology are not aligned in most cases.

In organizations where the providers, the payers, the hospitals and occasionally the employers are aligned, significant technology investment has occurred, with dramatic results.

For example, the Kaiser Permanente and Veterans Administration health care systems clinical information management technology has been the focus of large scale capital investment.

In the private health care marketplace, however, such alignment rarely occurs. The tactics presented at the close of these remarks aim to align market forces to drive technology investment in the NHII.

The two interim reports provide an outstanding vision of what might be done with respect to the NHII. It should be noted, though, that less than five percent of outpatient clinics, and somewhere between 10 and 20 percent of hospital environments have anything even remotely resembling a computer-based patient record, or systems for physician order entry.

Most hospital environments have well-established departmental clinical systems, such as clinical lab, radiology and legacy systems for patient accounting.

Rarely is there a true integrated clinical information management system designed for the clinician, not to mention the health care consumer.

In the outpatient setting most clinical practices have some form of practice management system, but this rarely serves the needs of clinical information management for the physician and care providers.

Recently, as I have mentioned, the ASP model has spurred technology adoption and, when hosted by a third party outside the health care enterprise, may significantly reduce costs associated with technology investments.

In this slide, we see a wonderful depiction of the simple data flow arising from a single clinical encounter in clinical practice.

This is created by the California Health Care Foundation. In this wonderful presentation, the foundation details all the clinical data arising from a single patient visit for sore throat.

When one considers the clinical encounter, the documentation, the physician's orders, all the attendant implications around the clinical encounter for labs, prescriptions, results, et cetera, even the immediate transaction set is considerable.

Secondary and tertiary waves of transactions to third party administrators, the pharmacy benefit managers, the HMO, the claims clearinghouse, the state and federal health authorities and, potentially, research institutions, other clearinghouses and public health authorities, amplify the problem.

The objectives, then, for the NHII must be to allow efficient communication of clinical information between people and between systems to promote health, support health care delivery, research, and the maintenance of the public health.

As previously described, given the heterogeneous state of not only health care delivery systems, but health care information management systems as well, achieving this vision is a tall order indeed.

In the interest of time, I am going to skip a couple of slides here. With the emergence of mature, clinical information management technologies such as described above, one may ask, why have we not yet achieved public consensus and commitment toward pursuit of a national health information infrastructure.

In their outstanding paper, will disruptive innovation cure health care, Christianson and colleagues reviewed the many factors that have impeded technology adoption in health care historically.

The authors describe a disruptive technology as that which allows those who were previously unable to do something which historically required the skill of professionals.

The authors point out that the various stakeholders in health care often suppress innovative technologies which may threaten their status quo.

Certainly, it is easy to identify a wide variety of issues that provide barriers to change in U.S. health care today, or opportunities.

First, among physicians in practice, there is fear of change, given that so much change has occurred already and so much of which has occurred adversely impacted their ability to practice medicine and derive value for their services.

For physicians now, losses loom larger than gains. In addition, there is organizational resistance from the entrenched stakeholders.

Hospitals are striving their inpatient census, physician organizations are striving to maintain their autonomy, health maintenance organizations are striving to reduce hospital and patient census and physician autonomy, et cetera.

It is no wonder the consumer and the provider are frustrated beyond belief.

Christianson and colleagues describe certain patterns of regulatory resistance, which also inhibit technology adoption.

For example, they describe how nurse practitioners and other non-physician allied health professionals may perform as well or better than physicians in certain situations.

For example, in the cold and flu season, studies have found that nurse practitioners may do just as well as physicians when caring for simple problems, and patient satisfaction may go up when more time is spent with them.

Yet, in this country, many states have regulations that prohibit or restrict nurse practitioners' practices in inefficient ways.

One may posit that if nurse practitioners were empowered to practice more independently, they might choose to maintain their relationships with physician colleagues via the NHII.

The same might apply for community and regional physicians with their regional academic medical centers.

Need for such connectedness is a driver for the NHII. So long as there are regulatory impediments from allied health practitioners or telemedicine across state lines, there is a barrier to the NHII.

I believe another form of resistance may be described as structural resistance where, due to the episodic nature of care and the information imbalance between physicians and patients, we have not yet seen consumer demand for service and convenience similar to the consumer demand for service and convenience in other industries.

As selected patient populations become very well informed, however -- for example, patients with HIV disease -- in some cases they become as well informed as their providers.

On-line discussion and chat rooms arose to provide peer group support when it wasn't available from the traditional providers.

The demands of HIV care also prompted certain physicians to provide special services for these patients. The same pressures don't apply to most routine care cases.

Lastly, it may be said that the simple fact that the U.S. health care system is in such chaos that this alone prevents significant new technology adoption for health care information management.

Many physician practices and many hospitals are struggling simply to survive amidst organizational upheaval, reimbursement restructuring, cost containment, and managed care.

In this environment, investments in technologies that do not have immediate benefit, or at least are not perceived to have immediate benefit, may be difficult to justify.

In addition, given the intrinsic flux within the system, with rapidly changing organizational affiliations, mergers and de-mergers, it is difficult to make investments in technologies that may serve to better interface one health care setting to another, as Reed pointed out.

In this scenario, the politics of information would hold that each entity has its own copy of any and all health care data that it needs to run its business, and it doesn't trust any other entity to share or hold any part of its data, as it may be used against them.

What are the unresolved issues? There are numerous technology issues which remain unresolved for the national health care information infrastructure.

I believe that, even if they were completely resolved, we would not see widespread adoption or consensus to pursue the NHII.

This is because, as Reed has pointed out again, the sociocultural issues are equally, if not more, important.

I think the principal issues that remain unresolved for the NHII are not related to technology, but rather, related to societal issues -- perception, privacy rights, data ownership and property issues around health care data.

We have yet to adopt in this country a national patient's bill of rights, or other legislation which may serve to define health care data ownership and property rights.

In the Medscape white paper on this subject, which I have included in the handout if you are interested, we take the position that the patient is the owner of his or her health care information.

The physician who creates a chart has limited property rights to their records, but is not the owner of the information contained within it.

The complexity of this issue alone impacts not only data privacy, security and protection issues, but also derivative uses of the data, which will be discussed below.

A related data ownership issue is the boundary-less condition that exists when a health care payer is also a patient's employer.

In this setting, there are no walls between the entity reimbursing for health care services and the patient's employer, as they are one and the same.

A clear delineation is needed in such settings to give patients reassurance that health care information won't be used to adversely influence work place decisions on hiring, promotion, projects, et cetera.

Providers need a level of comfort that health care information won't be misused by the employer, or that patients may not be forthcoming, given the privacy compromise and, thus, conceal critical health care information from their providers.

Yet another related issue to data ownership is data monetization. Given that we do not yet have a robust property model applied to data, it is difficult to monetize the data in a coherent way.

What are reasonable expectations for patients who contribute their anonymous data in aggregate form for health care research.

What are reasonable expectations for the providers who may have been involved in recording and gathering health care information from patients as well?

Finally, what is a reasonable expectation for data that is used in secondary analyses? In each case, either the patient, the provider and the health care enterprise or data custodian may have reasonable expectations to participate in the health care data value chain.

Answers to such questions are difficult in the absence of a national policy on patients' rights and privileges with respect to personally identifiable health care information, and a model for applying property constructs to data.

There is hope that we are in the midst of a transition where such questions may at least be partially answered with the final regulations from HIPAA and hopefully a patient's bill of rights.

Lastly, I believe the average physician and patient do not recognize yet the benefits which will arise with the development of a national health care information infrastructure.

I am looking for the time when a famous politician or someone from Hollywood is saved across the country because they have an online health record.

Physicians have yet to see any indication of an absolute need for the adoption of any of the components of the national health care information infrastructure.

The HIPAA bill is looming large now in the clinical consciousness, and may force some clinicians to adopt clinical information management technology to address HIPAA requirements.

However, many physicians are simply taking a wait and see attitude before making even the smallest of steps, despite the carefully documented benefits which may accrue to the quality of care, reimbursement and productivity when using electronic medical records.

I believe additional research is necessary to assess broadly the impact of components of the NHII, for example, EMR or online health records, on health care service, quality, costs and health care outcomes across populations.

Particularly difficult research questions must address the impact of network effects and other systems effects within and between health care enterprises on individual and population health.

In addition, the health care consumer is largely unaware of the state of clinical information management in the United States today.

All the consumer is aware of is their frustration with accessing care, health care and pharmaceutical costs, difficulties with health care reimbursement, and for 44 million Americans, the absence of adequate health care insurance.

I believe that the average health care consumer is now focusing on the privacy and confidentiality perceived risks, rather than the potential for significant improvement in health care service delivery and convenience.

When the average consumer perceives that having an online health record is a good thing which can make them feel better about their health care or maybe even save their life, only then will it become a fixture in their expectations for health care delivery.

To begin to make way for an NHII, I believe we first must begin to make evolutionary changes in the health care delivery framework itself.

Implementing new technology for technology's sake alone is not likely to be successful. If, on the other hand, new technology is being implemented in response to requirements expressed by an evolving health care delivery system, it is much more likely to be successful.

For example, if we have the need to triage cognitive services of clinicians to appropriately match the clinician's skill level to the difficulty of the patient's medical problem being seen, this will have implications for communications and data sharing networks across the health care environment.

This has been the goal of telemedicine research for decades. Early experiments in telemedicine have looked at these issues in a variety of ways, typically as a point-to-point extension of a single health care delivery enterprise, rather than building upon the conceptual framework of an NHII.

Training average clinicians to use communications and data sharing networks would naturally evolve the local practice of medicine to an NHII-based model of medical care, where cases could be matched to the appropriate clinician for cognitive services, whether across town or across the country.

The success of the internet and other industries has been to disintermediate people or processes that separated consumers from the sources of products or services they desired. The same might occur in health care.

We already see patients going on line in record numbers to access health care information on the internet themselves, to inform their own thinking about their health care conditions, medication, life style and other issues.

In certain situations, patients may not need to visit the doctor at all. A simple clinical dialogue over the NHII may suffice.

From a technology point of view, however, the NHII may best be achieved by investing less money in high end complex technologies and more technologies that simplify complex problems.

In their paper on disruptive technology, Christianson and colleagues describe the need for changing the distribution of the provider mix to allow for the vast majority of patients with simple problems to be seen by allied health professionals rather than physicians.

TCPIP is a relatively simple technology that was disruptive. HL7 was a disruptive technology for health care information systems.

For the NHII, we should focus research on simplifying complex problems like clinical information management methods for basic secure interoperability, simple document and data representation and ease of use for provider and patient alike.

Potential tactics to approach the NHII. In addition to technology and policy initiatives outlined in the interim reports, the following may serve also as a motivation for a national health care information infrastructure.

First, define contribution to health insurance. As employee benefits in health care defaults from defined benefit to defined contribution health plans, it may reasonably be expected that employees will have increased demands for health care quality information, satisfaction information and other metrics pertaining to their choice of health care providers and plans, and the purchases of health care services.

When patients are managing their own health care dollar, they will be increasingly sensitive to health care delivery service and convenience issues as well.

Enabling the NHII in ways that have been described above will theoretically allow patients access to performance data on physicians, hospitals and plans.

Value-based health care purchasing. Similarly, employers who are facing escalating health care costs, particularly in the area of prescription drug benefits, will also look for means by which to judge their health care expenditures.

Health care purchasing cooperatives and other business coalitions have already formed around the country to seek to rationalize and control their health care expenditures.

To do so, they will have need for health care service, satisfaction, quality and outcomes data, with which to make health care purchasing decisions.

If the buyer is demanding such performance data from the health care delivery system, the system itself will need to adopt tools for gathering and managing clinical information to meet this need.

Patient safety requirements. Only recently it has become widely recognized, thanks to the Institute of Medicine report, that medical errors are one of the leading causes of death in this country.

Most pundits agree that medical error is not due to gross physician negligence in most cases. Rather, it is due to the absence of a safety net or systems infrastructure that can support decision making at the point of care.

Physicians all too often are operating without a complete state of knowledge regarding the patient at hand, not the most relevant and applicable best practices or clinical care guidelines.

Both health care consumers and health care payers have now recognized that medical error may be a leading contributor to health care costs, and thus demand for improved patient safety will necessitate implementing components of NHII, particularly tools for improved clinical information management and decision support.

Computerized prescription management and physician order entry. Perhaps the best way to apply scarce resources in technology investments in health care is to apply them to the process of physician order entry and computerized prescription management.

It is recognized that 85 percent of all health care costs result from physician decisions at or near the point of care.

Clinical decision support systems can positively impact behavior at the time of physician order entry. Standard order sets, or clinical guidelines may be provided to the physician in a helpful manner that makes it easy for them to be followed.

A specific example is in the area of computerized prescription management. In this case, physicians may benefit from automatic medication interaction assessment at the point of care to avoid untoward adverse drug events, or adverse drug events.

The technology for this type of clinical decision support is widely available and robust.

As health care consumers and health care payers become increasingly data driven, the need for detailed evidence regarding clinical practice will only increase.

With the use of electronic medical records tools, a rich repository of structured clinical data is accumulated.

I believe this will enable new forms of evidence-based medicine or evidence-based practice to arise, where real-time comparative analysis may be performed for individual clinical decisions against reference populations drawn from the clinical data repository.

The clinical data repository may be used to create tailored clinical prediction rules, which may give an individual patient a risk assessment or prediction, given the population model.

Collaborative disease management. Perhaps the strongest pressure, however, for an NHII will come from the consumer, whose expectations for health care service and convenience will necessitate information technology investments among all stakeholders.

The consumer now has the expectation of round-the-clock access to online banking, information resources on the internet, travel services, et cetera.

I believe a new model of chronic disease management will soon emerge where patients and providers are connected continuously over the online health record.

This will allow the patient to record symptoms and certain physiologic parameters remotely, and have them securely sent to the physician's record system.

By the same token, the physician will now have a continuous view of the patient's progress and care management, rather than an episodic view.

Two areas of reimbursement reform may provide a profound stimulus on development of the NHII. First, quality benefit programs.

As physicians in health care delivery systems become increasingly judged on their performance with respect to various measures of patient satisfaction, quality and outcomes, physicians will be incented by progressive health care delivery systems to perform on these measures.

In my clinical practice environment, for example, full time physician use the EMR to record key clinical data for all appropriate patients.

At year's end, the practitioner's compliance with standard preventive services guidelines and other enterprise health care protocols and goals is assessed.

If a physician is over the target threshold, they get extra income. The physician is incented to use the electronic record tool as the recording tool because the data from the record is used to bench mark the physician against target thresholds. This sort of buy in has been very successful.

Differential reimbursement for automated clinical information management is another idea. While we have now seen several of our customers experience a malpractice premium discount due to their use of electronic medical records, we have yet to see payers recognize the benefits of using EMR and provide a differential reimbursement for physicians using them.

Because the quality of the data arising from a well-designed EMR may drastically simplify the reimbursement process for the payer, this is recognized as having value to the payer which may be shared with the physician.

Historically, payers and provider incentives have not been aligned for making information technology investments.

In summary, then, I would like to echo the comments made by Reed and Peter. I think we must continue to pursue the development of health care informatics standards.

I would suggest focusing on prioritizing standards development in a cost effective way; that is, pursue standards that have immediate impact, or pursue the 80/20 rule, such as development of a minimal health care data set.

The NHII will not result from technology innovations alone. We need forcing functions in the marketplace, in the business models, which will create requirements that will stimulate adoption of the NHII.

We need to define health care data, privacy, confidentiality and security attributes, as well as property rights for health care information, so that we can pursue the monetization of the health care data itself.

We need to equitably distribute costs of the NHII by allowing self-interested parties to pursue the NHII, most likely through incentive programs and reimbursement reform, as I have described above.

Finally, leadership is key, and I turn to the committee to continue to demonstrate its leadership in this area. Thank you.

DR. LUMPKIN: We are a little bit over time, but I think we can stretch our agenda a little bit and take some questions.

I actually have a couple that were inspired by Peter's presentation. I would like each of the panelists to address two questions. These two questions are who should lead and who should pay for the system. Peter, you asked the questions, but I noticed in your presentation you didn't answer them. If you could give us your opinion on that?

DR. JUHN: Okay, who should lead, who should pay. The leadership has to be unbiased, credible and having public backing.

Therefore, that forum will allow an opportunity for government to actually step up to the leadership plate.

As far as who should pay, the payment for this really depends upon, as I stated earlier, the business case for actually putting this thing together, and the incentives and the alignment of the incentives that occur.

I think the who should pay is all those stakeholders who would actually benefit from having a system like this in place.

For instance, the consumers should pay in some fashion. The providers should pay in some fashion. The other stakeholders should pay in some fashion.

I think it is that linkage to payment, and in the previous presentation we saw this whole movement to define contribution.

I think that, if you will, gives you an opportunity to link the benefits of a system like this directly to the consumers and basically make a very straightforward value proposition to them.

If they find value in having personal online medical records, they should actually pay for having that value.

DR. GARDNER: Who should lead? I would take the example of the National Library of Medicine with Pubmed or the Medline capability, and even the internet.

I think in this case, there were people with Medline who were, in fact, in a competitive business.

The government decided to go ahead and make the Medline free. I was in Taiwan a year ago and it was used there. In Southern Utah, I used it while I was working on a manuscript.

That public service is of tremendous value. I think there is a certain amount of this that the government and committees like the NCVHS need to take the leadership.

I think there is need to cooperate with industry and the like. For example, the DRG ICD-9 codes are used. Other coding systems are used.

We need to have some standardization and I think government needs to take that leadership position.

The question of who pays? The government needs to pay for the standardization process, I feel. Within Intermountain Health Care and the university, I sit on executive boards of both groups.

I hear the university complain that Intermountain Health Care can do things for a third less cost than the university can.

They both run teaching programs and the like. I think there is an opportunity for the institutions to pay for the activities.

However, building the infrastructure to get the thing started, I don't think, is a cost that each institution should have to pay.

If the infrastructure was there, and the institutions could attach onto it and use the standards that are available, I think each institution would do well for the gathering of the data and providing high quality health care at less cost.

DR. MIDDLETON: Boy, those are the easy questions. As I said, I think there is an opportunity for continued leadership between the NCVHS and, intriguingly, the NCHS as well.

I don't think we are going to overcome the fundamental structural issues, if you will, around values with respect to health care in this country until we have marked organizational and reimbursement reform.

The question is, do we have to wait for a national crisis. We already have the crisis of confidence in the health care delivery system.

Do we need a worse crisis to spur us to act upon health care organizational and reimbursement reform.

I am not personally sure whether a universal health insurance program or universal health coverage necessarily realigns incentives for investment in technology, because it obviates a lot of the organizational chaos that I have described.

I think as many pundits have said, that will proceed in an evolutionary change pattern as opposed to a revolutionary change pattern.

Therefore, in the interim, we still need to have, as has been pointed out again, increased support and development and perhaps requirements for the adoption of health care information standards.

I would suggest, again, starting with those things which are simple first and then seeking to scale the mountain, if you will.

Standards around minimal data sets, around the minimal chart attachments, if you will, for claims, around secure interface interoperability issues, or around XML document-type definitions and the like for basic information exchange between systems.

I think the leadership is going to come from public private joint ventures. I think the payers are now emerging, along with some of the pharmaceutical companies, as those who are willing to take the lead and make investments in the information technology to support the management of their health care dollar whether, from the employer's point of view, it is their health care risk or, from the pharmaceutical company's point of view, it is their health care investment.

That is who should pay. I think if we establish the value chain, people will line up to pay. There is so much value in the data, it is going to be like nothing we have seen before, even with respect to MP3 and Napster and all those kinds of intellectual property issues on other types of content.

Health care data has yet to have that debate even begun, because we don't have a property model for my information, your information, my clinic's information or my hospital's information.

All parties should pay and benefit, but we need to have some basic reform or some basic structure in place around data property rights and attributes, et cetera.

I think, just to close, the payers have yet to pull their oar in a manner that is equitable. Physicians and health care delivery systems have largely been paying the foot of the bill or the majority of the bill for health are technology investments.

The payers, often times, are the ones who experience the benefits, to whom the benefits accrue.

If the payers did adopt a differential reimbursement scheme or paid for quality, then we would see widespread adoption of this technology.

DR. STARFIELD: Dr. Gardner, in a nutshell, could you tell us why the VA system is not pursuant to the vision, if I understood you correctly?

DR. GARDNER: The VA system is a very nice system. It is a giant step forward. It is basically a free text system.

One of my good colleagues in the field, Clem Mcdonald, said there is nothing free about free text. You aren't able to process it.

We are getting better things going now for natural language processing, but we really need the structure in order for computerized decision making systems to work.

If there is so much uncertainty about the data, we as humans can have trouble handling it, but computers will fall flat on their face. We have to have the structure.

DR. MIDDLETON: I would like to follow up and reflect my transition from academic refugee to vendor of health care systems now.

I think it has to be remembered, or one needs to remember that yes, we do want to ultimately structure the data to maximally derive value from structured data that can be machine interoperable, et cetera.

However, from a clinician's point of view, simply having the last note goes a long way to informing the clinical decision making at that moment in time.

Yes, it should be ultimately structured, but let's not forget what paucity of information there is now, typically at the point of care, for most clinicians.

DR. STARFIELD: Paul, did you have a comment about that, too?

DR. JUHN: No, not at that time.

DR. GARDNER: Let me challenge that a little bit. We need to start somewhere, but gosh, we have been at this 30 years. We have had structured records for 30 years.

If we are going to say, well, okay, for the next 30 years we will do structured text, we will be happy with it, you don't get near the benefits you can.

The VA system is wonderful for a lot of things it does. I was just struck that there wasn't the structure that there needs to be. This debate can go on forever. So, I want to thank you all.

DR. LUMPKIN: If I could just sort of generally speak for a couple of minutes, and then we will have to move to the next panel, my specialty training is in emergency medicine.

I just came back from a conference last week in Philadelphia. I spent a fair amount of time in the exhibitor area.

It seemed to me that there were two different approaches to documentation in the emergency department, which may actually be a fairly decent test bed, given the current crisis that is existing with overcrowding and emergency physicians looking to technology to allow them to see more patients.

Also, another pressure is the E&N coding, and the system that is in place, and trying to be accurate in what you bill for.

Many of the systems that I saw took two basic approaches, one for calculating the E&N code, making sure there were adequate numbers of things done to justify the level at which it was billed.

One was a check-off system which, in effect, was a structured way of documenting. The second was based upon dictation and pulling out of the free text key words that would then generate the billing structure.

We have had a little bit of a debate. Which way do you think our system will go?

DR. MIDDLETON: I think both approaches actually have value. I am convinced, however, the more you can structure data at input, the higher quality the data is derived from the system.

The reason is that the clinician has the highest signal-to-noise ratio, if you will, of what he is trying to say to the system when he is doing it, as opposed to it being derived secondarily by coders, abstractors and/or MLP abstraction systems.

The challenge is, at the point of care, to balance structured data input issues, usability issues, with how much data you actually need.

If we were to structure the entire clinical encounter down to a SNOMED level of granularity, involving, for a moment, the lack of all the required composed code, it would take each physician one day to see a patient. That is not acceptable.

What we have to do is figure out how -- I believe in an information theoretical or decision analytic way -- how to prioritize the data gathering at the point of care.

Is it necessary to structure the examination of the left lower lobe lung field? No, it is not. Is it relevant, however, to structure, at a minimum, the patient's problems, medications, allergies, advanced directives, perhaps all the laboratory data, which is fairly easy to do with the given information models.

So, the trade off is around usability and the value of the data. Given that we don't have strong outcomes reporting requirements, people are pursuing this all over the map in a variety of different ways.

DR. GARDNER: I would say that if you could get the codes in at first, you would be better off. It is interesting, manufacturers have taken the code and then generated free text sentences from it to make it more applicable to people.

In fact, I have a son who is a physician and I have a son who is in medical schools. Those who are in medical school are learning how to develop structured coding schemes.

When they come out, they will have learned how to dictate and they will have learned how to do it very well.

For a time, we are going to have to do both. We are going to have to start clear back in medical school or in college for these people to learn how to do structure and learn the value and benefits of getting structured data input.

DR. STARFIELD: Can I follow up just a question on that? I don't know if any of you are familiar with the minimum basic data set that this committee has come up with. Is that a start?

DR. MIDDLETON: I have looked at that. I guess I would suggest -- I apologize if I have forgotten some of the details.

I guess I would like to see them specified in a manner that is usable, from the informatics point of view, in the implementation of a system.

That is, the code, structure and attributes of those data as required by a system, as opposed to a minimal data set for reporting alone. If that hasn't been done, I would be very interested in doing that.

DR. LUMPKIN: Jeff, last question.

MR. BLAIR: Peter, I thought I heard you mention an estimate of $200 to $500 per person to fund a national health information infrastructure.

Could you help us understand a little bit at how you arrived at those numbers?

DR. JUHN: Those numbers are derived from a number of studies that look at the creation of different elements of the system.

I guess what I was getting at, or the way I derived that number, was basically totalling up all those different components and looking at the per person charge of actually putting those into place.

MR. BLAIR: Is that in an article?

DR. JUHN: It is actually in a series of articles. The actual number, $200 to $500, is actually my, if you will, meta analysis of some of those articles.

DR. LUMPKIN: Thank you. You have been very helpful. I will ask the next panel. Let's see, are we going to move them to this end? Why don't we move you to this end. Let's take a five-minute break while we get the new panel set up.

[Brief recess.]

DR. LUMPKIN: We are now going to go to our second panel. I will ask the panelists to introduce themselves, and then we will proceed with the presentations.

Agenda Item: Panel 2.

DR. LANE: My name is Steven Lane. Once again, in addition to being the medical director of health information management at the Palo Alto Medical Foundation, I am also a practicing family physician and will really try to bring that perspective of the practicing physician trying to adapt to this technology to the group today.

MS. CAIN: My name is Mary Cain. I am the director of the private research program at Institute for the Future.

Institute for the Future is a small, independent non-profit think tank here in San Francisco and in Menlo Park.

We concentrate on creating environmental landscapes five to ten years out, forecasts of what the future might be.

DR. NEUHAUSER: My name is Linda Neuhauser and I am on the faculty at the School of Public Health at UC Berkeley.

I also direct the Center for Community Wellness at UC Berkeley, which produces mass media health and wellness information for Californians, primarily, but we also work elsewhere in the world.

DR. LANE: Okay, as I said, I am going to try to bring the perspective of the health care provider to this discussion on the interim report.

Just a few words about my organization. The Palo Alto Medical Foundation actually began in the early 1930s. It was started by the father of Dr. Lee, who is sitting in the back of the room.

It became a non-profit foundation in 1980, affiliated with a larger integrated delivery system, Sutter Health, in 1993.

With recent affiliations locally, we are now an approximately 400 physician provider group with about a million visits per year, and I believe we are now the second-to-largest medical group in California, after the Permanente Kaiser Group.

We have been involved in the implementation of an outpatient electronic medical record as part of an overall clinical information systems strategy for the last six years.

I have been trying to lead that process during this time. This is a somewhat shorter time line than the 30 years that Dr. Gardner has been working at this at Intermountain.

Ours has really been a primarily outpatient focus to date. Unlike the experience at Intermountain, we have been building our system based on commercially available products, rather than trying to build them ourselves from scratch.

I think we could be seen as a bit of a canary in the mine, as to what it is really like for a group to try to do this, and live this vision that has been outlined in your report.

We have, within Sutter Health, three different foundations that have been implementing the same electronic record system over this period of time.

Our focus, as I said, has been on the outpatient EMR. Within our organization, there is also work going on in an inpatient EMR, internet and intranet tools, as well as moving in the direction of providing web-based services to our patients.

Again, my perspective comes from real world experience. I still practice medicine half time. This is an experience in really trying to execute a part of the vision of the NHII at the provider level.

Through this process, we have been struggling with the challenges of information capture, storage, communication and presentation for the providers, especially.

We have been working to develop and implement standardized terminology within our various affiliated groups which perhaps could be seen as a microcosm for the national challenges of developing standards that have been discussed already this morning.

We have been implementing clinical protocols, practice guidelines and decision support tools within our system, and looking at how those really play out when they are turned on in the examining room with practicing physicians.

We have been operationalizing the spirit of the anticipated HIPAA guidelines to ensure the security, confidentiality and really the permanence of the individually identifiable patient information in our various clinical data systems.

This has really been quite a task. It is based on this experience that I really welcome the opportunity to share with the work group a number of specific comments regarding the barriers, or the challenges, as I call them, but I really do see them as barriers that I think do need to be considered at the health care provider level as we move toward the goal of a national health information infrastructure.

I was commenting at the break that this is somewhat different than my usual role of selling the idea of electronic records and clinical information systems to physicians and patient groups and administrators in our organizations. This is my chance to complain a little bit.

First, I am going to focus on the experience of the individual provider, who really, as you implement these systems, is faced with a number of new challenges.

The first I want to discuss a little bit is information overload. I think it is great to have all this information available.

There is no question that the goals of quality care are served. But when you are the doctor in the room on the front line, whether it is in the emergency room or the hospital or the clinic, the flood of information that you are presented with can be really daunting.

There is no question that it can present an increased demand on physicians' time, which has already been squeezed in the interest of productivity and financial return, down to about the minimum that one could imagine.

It is worth acknowledging the fact that ignorance can lead to efficiency. I think that that has really come to be the way that a lot of physicians practice.

A lot of physicians in busy practices will actually be seeing patients every five minutes. It is hard to imagine taking into account a patient's lifelong medical record and all of the various variables that might come to bear on the encounter, when you have only that much time, and that has to include opening and closing the door twice.

Providers really have to digest and respond to the information that we present them with. I think as we design these systems, we have to think about how that process will go on.

An example was raised in the first panel of computerized prescription management. We have implemented that within our system.

It really is, as Dr. Middleton said, very robust and very powerful. You have to get a sense of what that experience is like.

You are seeing this patient for the sore throat. You want to write a simple prescription and get them out the door and on to the pharmacy.

First, the system checks to see if the patient is allergic to the medication that you have prescribed. Fair enough.

Then it checks to see if there is an interaction with any of the other medicines that the patient is taking. This is also important, but sometimes there are, and then you are presented with that information and you need to think about it.

Many of the interactions really aren't clinically relevant. There may, in fact, be interactions between the drugs that are already on the patient's medication list that you hadn't thought about before, and you are faced with those.

Then there is formulary checking, to see if it is compatible with the patient's insurance. Then we have built into our system alternative medication alerts based on best prescribing practices that have been outlined by clinical pharmacists throughout out information, very helpful.

Then we have best practice alerts, which pop up on the screen, which can inform the provider that we have established organization-wide practice guidelines on our intranet, and would you like to click here and go view that for a while.

This process of prescribing a medication can suddenly become very complex and, again, is very different than the practice of pulling your prescription out of your white coat pocket, writing something illegible on it, and handing it to the patient.

I didn't mention that we also have to specify what the patient's preferred pharmacy is, so that it can then be electronically transmitted to the pharmacy.

So, decision support tools really have to be filtered to prevent analysis paralysis at the level of the provider.

Providers really need to have intelligent tools available to them, to assist in the management of various forms of data as well -- text, voice, data, images, all of which can come flooding back to them at the time of the clinical encounter.

One example that we are facing within our organization is the simple process of a physician trying to take an afternoon off.

Now they have to sign out their pager, their voice mail, their e mail, their clinical messaging. Why bother. Just stay at the office.

The second issue, from the provider perspective, is really, I think, a perception of loss of autonomy. Physicians, as many of us in the room know, are a fairly autonomous group and really like to call their own shots and practice sometimes by their own rules.

I am not arguing that that is right, but that is quite prevalent, I think, within the physician community as a whole.

As we implement these systems, we have to realize that the same system that allows providers to access this wealth of clinical data can also monitor the provider's use of that data.

We heard about the benefits of that in terms of bench marking, in terms of looking at indicators of productivity, of quality.

Physicians, as you might imagine, can perceive this as a threat, and that needs to be reckoned with, I think.

There are also challenges to adapting the new technology itself. Someone suggested that physician age may be a predictor of adoption of new information technology.

I don't know whether that is true or not. I don't know frankly whether it has been studied. We have certainly found that the senior physicians in our group express a greater anxiety about the requirements of changing their established practice pattern.

The cut point in our organization seems to be around 45 or 50 years old. Those that are older than that, who have been in practice a long time, really see this as quite a loss to their current style and patterns of practice.

If, in fact, there is a relationship between age and technology adoption, it raises a concern that possibly the clinical judgement and acumen that has been earned through years of medical practice might, in fact, be inversely proportional to the successful adoption of these new technologies, and the continuation in clinical practice.

We might be doing ourselves a disservice by alienating those physicians who perhaps have the greatest experience and the most to offer.

I think the doctor patient relationship also can be challenged by the introduction of these technologies. There is no question that the benefits of real time information access and decision support require that computers be brought into the examination room, to the hospital bedside, right to the point of care, as a number of people have mentioned previously.

Some physicians do perceive this as an intrusion into their communication with the patient, and incompatible with the process of developing a trusting personal relationship between the provider and the patient.

As patient information is codified and digitized and made available across the networks to any provider, what then becomes the added value of a long-term relationship between a doctor and a patient. What happens to the healing experience that can come about when that relationship is called upon in a time of illness.

What happens to the whole notion of continuity of care. Is it important any more when the provider's role is really to serve as an intermediary between a ill patient and their data base.

I don't pretend to have answers to these questions, but we are living some of these and I have physicians ask me these questions every day.

Control of clinical data has been discussed a bit. It was touched on in the interim report, and I wanted to make some specific comments on that.

I think that the goal of patient ownership of the data, of complete patient access to the data is laudable. I think we also have to remember that that may result in a change in documentation practices on the part of providers, who may be concerned about revealing sensitive information to patients in an unfiltered way.

Similarly, patients' ability to edit the medical record, as opposed to amend it, could introduce inaccuracies into data which had previously been entered by providers, and I think that needs to be watched for.

There was a mention in the interim report that information from the provider health record could be transferred to the personal health record based on patient permission.

Well, if we leave it up to the patient to determine which of their data is transferred into their record, how do we know they are going to make the right choices. How do we know that they might not miss some important piece of information that we want them to know about. I think that needs to be considered.

Similarly, if the provider's access to clinical information is restricted based on a rubric of appropriateness to the patient situation, who is going to determine that, and what impact might that have on quality of care, if a treating physician has access to only a subset of the information that might be available on the patient, and how might that impact the safety of clinical providers if we keep, for example, information about communicable diseases from them at the time of care.

I want to shift a little bit, in the few minutes I have left, to some issues related to the provider group. Cost has been raised.

The issue of who is going to pay, I think, really is very important. I agree with the previous statement that much of the cost has been borne to date on the backs of the provider groups.

There are capital costs which are really new line items in our budgets as health care organizations. The hardware, software networkings, the continual upgrades, are challenges for us to meet on an annual basis and might, in fact, represent an order of magnitude increase over what we were spending on information systems just a few short years ago.

Operational costs are also substantial. We have anticipated savings with the implementation of these systems in the areas of medical transcription, medical records maintenance and transport. We are actually seeing some of those savings really quite dramatically.

What we are finding is that there are probably some low level positions within our organization that we can start to take out of the budget, as we replace them with much more highly paid information technology professionals to manage these same systems.

The ROI is a difficult argument to have with your administrators.

Issues of physician income do come up frequently. The clinical data systems and the new methods of electronic communication do facilitate asynchronous and remote care.

We are trying to move as an organization quickly into that direction. The problem, of course is the reimbursement models for care provided outside the traditional office or hospital setting really don't exist.

I think that if the committee can do anything to satisfy the providers, it would be to look at those models and to help us figure out how we are going to get paid for the work that we are going to do utilizing these tools.

Data security is a real concern for the provider group. We heard about the two competing models of client server and ASP.

We are in what I believe is the enviable position to have built our systems internally, and are able to rely on our own capacity for data storage and communication within our organization.

I think that many organizations that are smaller than we will not be able to afford the cost of implementing these systems themselves, will be driven to an ASP model where their individually identifiable patient data will, by needs, reside on a third party patient data warehouse.

We all have heard of the problems within the marketplace, of what can happen to the security of that data.

When the data custodian falls on financial hard times, there is, in fact, value in that data and there are no legal protections in place currently for provider groups to really ensure the long-term safety of that data.

So, just to finish up, as I know the time is short, a couple of recommendations. One would be to involve providers in the discussion, as we move forward and we plan how to implement this.

That should include physicians, nurses, pharmacists and providers of what has been called alternative and complementary medicine. I think all providers need to be part of this discussion.

I think really focusing on this question of who is going to pay, I think if we rely on the market to provide solutions, that we really may inadvertently and irreparably lose important aspects of the relationship between physicians and patients that have evolved over the past 100 years of the practice of modern medicine.

While, as Dr. Gardner said, we may need to pull the rug out from under medicine and start afresh, I think if we decide to do that, we need to think about what the implications are for patients, providers and health care organizations.

MS. CAIN: I wanted to talk briefly a little bit about Institute for the Future. It is a think tank that has been around for 30 years.

The health care practice there has been creating health care forecasts for the past 15, and recently we revisited a forecast that we did for Robert Wood Johnson Foundation in 1987, at the end of 1997.

We found that 82 percent of the point predictions that we made were, in fact, correct or had come true in the 10 years that had gone by.

This forecast looks at the entire health and health care system in America including financing, delivery, medical technology, information technology, and then the demographics and consumer population as well.

I am speaking to you from a more general perspective than perhaps some of the people in the room here today.

At the same time, some of my relevant experience includes working with the info project at the University of Washington for the CDC.

Info is the information network for public health officials that came out of the FIPO group at the CDC.

What I did there was interview individual county public health department employees about the implementation of the first phase of info, which was creating a wide area network in the state of Washington.

I think Info is actually a wonderful example of collaboration at the state and federal level that the committee should consider in going forward.

My other research is at the intersection of the internet and health care. I have written two five-year forecasts in the past couple of years for the California Health Care Foundation.

The first forecast was a five-year forecast trying to create a general overview of how the internet might assist health care practitioners. We looked at the drivers and barriers of using the internet for health care. Then our forecast consisted of six large application areas where the internet will change how health care is practiced in the next five years.

Then the second forecast that was just released this past week, in fact, was a consumer segmentation of online health consumers.

We looked across health status and online health care applications to see what the differences might be in terms of motivation and behavior for consumers on line.

In response to the initial report, I agree with Peter. I think it is a wonderful vision. It is a pretty vague vision, in my opinion, at this point.

The next step that needs to be taken is to actually create a game plan, and a map for how you might move forward.

I thought it was interesting that we were asked to talk about technical and operational barriers, when I didn't see a lot of technical specifications in the report itself.

It would be interesting to respond to the next step in the process, which would actually lay out what the game plan would be technically.

I also think that the definition for the NHII is wonderful and all encompassing, but very easily could become a moving target.

If you are not certain of who you are talking about what you are talking, then it becomes easy to say, this is really not what we are trying to accomplish here.

My response to the report was to think of two potential challenges and two recommendations or suggestions as a result of those challenges.

The first is understanding who the target market is for what you are trying to do here. The second is understanding where investment needs to be made in the integration of information to move this forward on many different levels.

The creation of the NHII is going to consume a great deal of time and effort. I can see one barrier being the initial paralysis at the nature and size of this task that you have taken on.

I think it is really important to know where to begin, with whom to begin and how you can best lay the foundation for this infrastructure so it will encourage the use and development by others.

I think it is very important to identify the early adopters of this system. Who are going to be your first intensive users who will begin to populate the data bases with information about which they care, in which they have an ongoing interest, and for which they see a future.

For the personal health dimension, one of the results of this forecast that we just created is that all online health consumers are not the same.

They have very different needs in terms of health status, they have very different needs in terms of their concerns about privacy on line.

The chronically ill individual who looks frequently back at the same very disease-specific web sites has different privacy concerns from a well individual who may be responding to a promotion on line, or also may be responding very differently from someone who just got diagnosed with a serious illness.

Within that spectrum of health status, there is also another continuum which is simply the amount of attention an individual pays to their own health.

Someone who is chronically ill but does not pay a lot of attention to their own health on a daily basis may actually behave more like a well person, and someone who is well but hypochondriacal may actually behave more like a chronically ill person.

So, being able to tease out the differences in that consumer segmentation would be an interesting process.

Understanding whether someone is sick or well, why someone who is sick or well might create an online personal health record and what their threshold of privacy concerns are, vis-a-vis a desire for personalized health care and content, will map the likelihood that certain individuals will use the internet for health information, while others simply never will.

What we found in our consumer research is that, well, online health consumers are fickle and not loyal to particular sites for information, for transactions, for anything.

They respond to coupons, they respond to promotional materials, but they have no particular need to go back to an individual site.

I guess my suggestion would be to examine how and why individuals with different motivations might populate data bases, and in particular, in the personal health record dimension.

Also, having a sense of what the numbers are that we are talking about here, depending upon who your source is regarding market research related to online health consumers, it ranges from 55 million individuals in Cyber Dialogues research up to over 100 million individuals in North America for Harris Interactive, depending upon the definition and depending upon how they are counting these individuals.

One of the comments that was made in the report is that this might be supported by consumers. What would individuals be paying for, is my question, and why. Would they have the ability to opt out of paying for the system.

An aside is that I think defined contribution is a lot of consulting. It is the popular consulting fad right now, in management consulting.

For a significant shift away from defined benefits to, in fact, defined contributions, not just cost shifting, but in fact, defined contributions would require major change in ARISA and would also require employers to completely change their involvement with health care and health insurance, probably not something that is going to happen in a relatively tight labor market.

In looking at the community health dimension, the primary end users will be public health officials, whose work balances the needs of individuals and the public.

Understanding the range of public health departments, from large metropolitan public health departments with lots of resources, who are concerned about urban epidemics as opposed to smaller rural county public health departments where the local public health officer may also have a job as the school nurse, those individuals have very different needs, very different resources available to them, and have very different challenges in their everyday work.

What I found, in interviewing for the Info project was that individuals further out from the city had less and less time to overcome much greater challenges.

In Ocanogin County in Washington, there were no fiber optics networks when they started the project. There was no backbone whatsoever.

The local county government was opposed to bringing it in because they thought it was a bad idea for some reason, and it took an extra 18 months for that implementation to happen out there in that county.

Then for the provider health dimension, there have been a series of articles recently discussing what might be the killer app to bring clinicians online, and the clinician resistance to technology is pretty well known, and I think others have spoken to this very eloquently.

Another barrier addressed by understanding the target market is the concern for privacy and security of personal information on line.

The technology, obviously, exists. Information security is actually threatened most by the behavior of those that are handling the information and not the technology itself.

Consumers don't understand, for the most part, how the security of their information is handled. They certainly are not confident in the security of their health information on line.

Seventy-five percent of individuals surveyed earlier this year by Cyber Dialogue said they did not trust that the information that they shared on line would not be shared with a third party without their consent.

They also significantly changed their behavior or said they would change their behavior if they were searching for health information at their place of employment where their employer might be watching their behavior.

Harris also looked at this as it relates to -- compared American versus European public responses to the security of health care information.

They found that in a system where the government runs the information networks as opposed to social welfare, there is a greater deal of trust in the government handling that information.

There are also much stricter rules for handling that information and much stricter penalties in the European Union.

My second challenge and suggestion, area of suggestion, would be where investment is required to make this happen.

There is obviously investment required in the hardware and software itself, that a lot of the necessary fragments of the network definitely exist, but at this point, it is a matter of paving some of the cow paths that are out there, and being able to create the ideal network that we are all hoping for.

This is happening in an environment of traditional underinvestment in information technology from health care organizations, that health care organizations traditionally spend two to four percent of operating budget on information technology compared to seven to 10 percent in financial industries, also comparatively information-rich industries.

The investment also has to be in the integration of information, that health care information, as Blackford showed, is incredibly fragmented, and it is controlled by different groups who consider control of that information a powerful thing, and the territorial nature of these fragmented silos of information is something that will need to be overcome.

That also requires a decrease in competition between these groups that hold the power of this information.

I would suggest that you are in a position to create incentives for collaboration and consolidation of effort, that part of the investment would also be in the creation of alliances and relationships and addressing some of the more difficult political issues around sharing information.

I would also suggest that there is a need for investment in access. There is a need for an investment in consumer access, recognizing who the consumers are.

There is a need for investment in provider access, incentivizing providers to actually use the technology. There is a need for investment in access to make it equitable for everyone, whether in a rural or an urban setting, to have access to the power of these networks.

Finally, I think that there is a need for investment in networks, period. The internet, and increasing returns economics says that each person added to the network increases the value of the network overall.

So, a single fax machine isn't worth a heck of a lot, but a thousand of them create a community of communication.

What you are trying to create here is an incentive to join this network, a way to keep increasing the number of individuals, the amount of information and the amount of quality that can be brought by connecting everyone and integrating information. Thank you.

MS. LANE: I would first like to commend the committee on two excellent reports. I think they are a great start.

I have basically six ideas to add, to suggest adding to improve these reports. These come from my vantage point as kind of a grass roots worker with consumers around California, also other parts of the world. That is the perspective I will bring here today.

I will end up by suggesting that the NHII report be broader in scope, be deeper in specificity, be universally accessible, universally usable.

That the NHII be a result of many different partnerships, many public private partnerships, and that somehow the three domains that have been identified so far be more dynamically linked.

Whatever happens in the design of the NHII, that it be grounded in the experiences of real people. That is the vantage point I come from.

By way of background, I work with a group at UC Berkeley that has the mandate to develop health and wellness information for all Californians, and also to get it out to all California households.

This effort began 12 years ago, and it began rather badly. Since it has turned out well, I don't mind admitting to all the mistakes, and it has been very instructive, what these mistakes were.

We started out in the traditional, let's say, health educator, public health approach, in which we gathered together experts and determined what were the main health issues facing our California population.

We then determined what would be the best behavioral and health care solutions that we could apply to that, put all that information into a guidebook.

Then we had the presence of mind to actually take it out to the users before we published it. Now, that is a kind of radical idea.

When we did that, we took it out to diverse communities, and we were expecting they would say they liked it, and we would go ahead and publish it and get it out across the state.

Well, they trashed it. They said that all of our expert advice was for naught, that the topics we had picked were not the ones that really they thought affected their health particularly.

The solutions were condescending, impractical, not effective for them, from where they were coming from. Advice was nice, but they really needed to be connected into a whole variety of services in order to improve their health and well being.

So, with great chagrin, we went back, regrouped and decided to radically change our approach. What we did was to adopt a very participatory approach in which we said, obviously, what we are doing isn't working.

I think at the beginning of the session today, that John or Daniel mentioned that we have been doing health information badly for a long time. I agree. I have been part of that.

So, we adopted the philosophy that people actually know what they need, and they can tell us, if we are only open to it.

We began several years of going around the state and talking to thousands of people from all kinds of backgrounds, all age groups, all ethnicities, all kinds of health conditions, people with disabilities, all kinds of socioeconomic groups, all kinds of language groups and asking them, what did they think affects their health and well being, what would they do about these various issues that they are bringing up, and what services did they think they needed to connect to, to improve their health and well being.

Well, the results were very surprising. People did not talk about the kind of things that we public health professionals usually talk about.

In fact, a minority of the time did they ever mention what we would call a traditional health topic. Mostly they mentioned things that had to do with managing their lives, things like child care, dealing with violence, transportation issues, education, jobs, and the like.

They were very, very broad in what they thought affected their health and well being.

They also mentioned that for information to be useful to them, it had to be very, very specific. It had to deal with their neighborhood and at a very specific level. We were surprised by that.

They also mentioned that the services they needed to be connected to, again, had to be in their neighborhood and they needed to know a lot about these services, in order to connect up with them effectively and improve their health and well being.

This is what we learned. As a result of that, we took all this accumulated wisdom, plus the input of experts in many fields, and we developed what we call a wellness guide for Californians, what we call a life guide.

It covers a broad range of topics, and we put it in the words of the people who were to use it, put it in the format that they suggested it be in.

Then we worked with many sectors to make this come about. We worked with private industry, we worked with foundations, we worked with philanthropy, we worked with educational institutions and even government.

For example, one of the things that people said was, you know, help us connect to services. That was pretty hard with a statewide guide. It had to be 1,000 pages long.

What we did was to work with all the competing phone companies in California, no easy feat. We got them to agree to adopt a very simple people-oriented taxonomy of community services in the phone books throughout the state, that we could link into a very simple similar taxonomy in a guide.

So, no matter if you are in Sacramento, here in San Francisco or in Los Angeles, you could go back and forth and find an entre to the local services through the phone book. Anybody could use this.

We worked with advertising firms to find out the best marketing techniques that would help us get to people and interest them, motivate them, something that public health people are not necessarily known for doing in their educational materials.

We are now taking this print material and going on line again, in this same fashion, of having people determine what works for them on line, the format, the interface, the interactivity, et cetera.

That has been our experience. I think our of that local experience here, we have come across a number of issues that might be something of a microcosm of the issues that we are facing and thinking about in NHII nationwide.

I would like to share some of the ideas that hit us and see if they might be ones that would also be relevant to developing the NHII.

The first issue is the definition of health. I notice that both reports mentioned that it was difficult to have a good definition of health.

Nobody was particularly happy in this committee with the definitions, at least that is what the reports say.

There seemed to be a sense that we would like to move away from just a disease or medical care type approach in looking at health toward something else.

It was mentioned that maybe the WHO definition was better, that Utopian vision of perfect physical, mental and social health.

I think we are stuck there. We are stuck between somehow between disease and Utopia. We don't have a road map, a word that has gone around a lot this morning, on what is the pathway to get to this Utopian version of health.

So, I think that comes out of another issue that was brought out in the reports, that the factors that determine health are very complex, very difficult to know, which factors are really affecting people's health, and therefore how we should go with an NHII or anything else in health.

I would like to begin by just summarizing the current estimates of what affects health.

If we look at this pyramid, the current estimates are that health care affects about 10 percent of a person's health status.

Now, you wouldn't really know that from how we spend money in our health budget, in which 80 percent is going to health care, but it is only estimated to account for about that much of a person's health status.

Environmental factors and genetic factors are another 20 percent each. The lion's share seems to reside in the social and behavioral factors at the bottom here.

These include, of course, the many decisions that we all make every day that affect our health.

Now, if we look at this, the social and behavioral factors, again, that presents us with a lot of complexity. What are we talking about. There are so many factors here.

One of the things that has really intrigued me, looking at the research over the last 30 years, is that one of the most powerful factors to emerge in this whole are of social and behavioral factors is the perception of one's control over diverse issues in one's life.

That factor seems to be emerging as maybe the single-most powerful determinant of a person's health, more powerful than smoking cigarettes or not, or diet or exercise, et cetera, the perception of being able to control diverse issues in one's life.

That is a very different definition than most of us probably go by in our usual health silo. If we accept this type of factor as being very important, then it might mean that moving toward health is more of a matter of handling life events better.

That is very broad. I would suggest that, from my own experience, that is what I am hearing from people. When I saw this pyramid, the first time I saw it, it was on an Institute for the Future presentation by Wendy Everett.

I had an ah-hah experience. I thought, you know what, that is what thousands of people are telling us. What affects my health is handling my life issues, all the hundreds of things every day.

We are beginning to understand why this must be so, why this factor is emerging in the international research, no matter what society we go into. It is always emerging as an extremely powerful factor.

We are starting to find some of the biochemical pathways that, on a sort of moment-to-moment basis may raise our blood pressure, depress our immune systems, lay plaque down in the arteries, et cetera, that result from the stress of not being able to manage all the life events that we have to manage. So, there is some reasoning behind this.

I think it might be a bit disconcerting to all of us here to adopt a definition of health that is more like this, because we think, how can we get out of our silo here and go into all the other silos of education and transportation and jobs and issues of inner city violence and so on and try to do something about it.

I would like to suggest in a moment that there are creative ways that we could partner to do this. So, not to drop this idea of moving toward maybe a more life issues and life events definition of health, because we think it is just too big to handle.

So, moving on, a couple of barriers to a great NHII. I mentioned the narrow definition of health. I would like to say, by the way, that I really like the definition of the NHII.

If you look at that, it is very much in the kind of flavor and texture of what people are telling us. They want the information they think they need when they need it, where they need it, in order to make their decisions.

Their decisions happen to be a lot broader than the way we usually talk about them in health, but I really like the definition you have come up with.

The second barrier or challenge is the weak links right now between these personal provider and community health domains.

I think they need to be dynamic, they need to be diagrammed in some systematic way that shows their dynamism.

I don't know how to do that, but certainly we have, in the electronic world, we could do some interesting things here. I know there is a lot of thinking that has gone on about that.

Lack of multisectoral partnerships, again, everybody so far has pretty much mentioned that. We need to involve everyone in order to do this.

You know, in the NHII, it will be developed no matter if government does it or not. It might be developed more by the private sector without government leadership and maybe a sense of the social grit. That would be unfortunate.

The last point here is, there is a lack of guidance on searching the net. Before this meeting, I decided to do a little participatory surveying myself.

I am currently working with a group of 30 disability organizations to try to develop a health and wellness portal for that group.

I asked them, I said, well, what you advise this committee about the need to develop the NHII. One of the things they said was, they really needed a road map to how to use the NHII.

They said, for example, we don't know where do we start. Do we just go on Yahoo and try to put in a word or something about health or a life issue we are facing.

That is probably not the best way, but where do we start. Where is a good site to start. What is a good way to search. How can we believe the information we are going to.

A lot of people know this stuff, but most of us do not know it. Can the people who know about value and information share that with us in some kind of guidance.

So, if the NHII is to work, it is not just a data base, as was mentioned earlier, but it has to really connect to people as users with that kind of guidance.

The issue of inadequate content is one that I have been studying for a while. I would like to just look at some of the information that Children's Partnership Organization, this is primarily from their report, looking at underserved internet users and content.

This was a study of 1,000 sites, trying to look at what do people really want from the internet and what are they getting.

What people are saying they want, again, is practical local information to solve their practical everyday problems.

They want information at a basic literacy level, content for non-English speakers, culturally relevant information.

If we look at what is available, we are only getting about six percent of the sites providing the local deep, specific information that I was talking about earlier.

The literacy level is about one percent at a basic level and content for non-English speakers, two percent, culturally relevant information about one percent.

I would add to this, in terms of disability accessible information, so information accessible for people with disabilities, probably about 10 percent of the sites are doing that right now.

Who is affected by this? We can add up. These are overlapping numbers here, but if we add up all the millions, we might come up to about 50 million Americans are not being served by the kind of content that is out there right now. It doesn't meet their needs.

I will give an example, a very specific example. I like the scenarios that are in the NHII report. I like the scenario about Mary Jones.

I was thinking about Mary Jones and trying to think more dynamically about how this report could be changed.

I noticed something about Mary Jones that wasn't in the report, and that is that she is a wheelchair users. When she got the suggestion from her provider electronically that she go and get a mammogram, well, she would have liked to.

She has no idea where she can get mammography who is suitable to somebody, a machine that she can use in her wheelchair.

So, she is saying, I really need to know where maybe -- California has not very many disability accessible mammography machines. It is a terrible thing. She wants to know, where is that.

Can I get my chair through the door of that clinic. So, down to that level of specificity. Where is the bus map. Is there a bus that can take my chair and get me there. Those are the kinds of things that people are asking about.

The six suggestions that I had, very briefly, are to develop national portals which encompass broad health and wellness information.

Again, this could be disconcerting because it is a little bit outside our silo, but I would like to mention something that is happening in California that might provide good model.

It is called LEAD. It is an initiative of the Governor's Office of Innovation. So, Life Event and Affinity Design.

It is an effort to design an e government portal for California that would cover all kinds of information using a life events model.

What the governor's office is doing is going around the state, talking to people all over the place, all kinds of people, having them develop maps of the life events that they think are important.

Then these things look kind of like trees. They have all kinds of branches. They intersect each other. Some of my colleagues from the Department of Health Services who are here might want to comment.

We were mentioning that, in one of these sessions where this big tree of life events was drawn by the participants, some 200 at a time, health was on every branch, whether it was education or transportation --

MR. BLAIR: I missed your definition, I didn't get the A in LEAD. What was that?

MS. NEUHAUSER: Affinity.

MR. BLAIR: Life Event and Affinity Design. Thank you.

MS. NEUHAUSER: So, the branches all intersect like they would in a tree, and it is extremely interesting and it really is another ah-hah moment for me, coming from my grounded experience with a lot of different people.

The portal will hopefully be something that is very easy for people to use, comes in the way that they think about managing their life.

It doesn't mean that the health sector has to develop everything for everyone else. All the sectors would work together on this.

We don't know where this will go. It is an extremely innovative model. I would certainly suggest to the committee to look into this a bit more.

Linking information to local service connections across the United States, I think this is a must-have feature of the NHII.

We have been doing this in California, as I mentioned, with the telephone companies, getting them to standardize taxonomies, easy-to-use taxonomies of local service information.

This needs to be done now on line. We are actually working on that with some of the sites we are doing, hopefully to build an online system, zip code based, very easy to use, of local service connections that anybody going on line can be connected up to in their neighborhood.

That is what people say they want. We have the technology to do it. So, we might as well go ahead and do it. I really don't think it would be that hard.

Number three, involve communities in developing local HII information. I do think the report comes a little bit top down here in terms of leadership and so on.

What I have been noticing in California is that a lot of local communities are developing their own self authoring tools, their own local information. They are trying to share that more broadly with other organizations around the state like a new site, e that is being developed or abilities network.

They are trying to develop template that people in local areas can use, find out very specific information that relates to health, and then bring all that back into a giant portal that can be used by people all over the state.

Universally usable content, I think we know what that is. I didn't see much about disability issues in the report. That certainly needs to be there with standards, the section 508 standards mentioned and other standards.

Then last, providing guidance on using the NHII in some practical way for folks.

Finally, my last suggestion is that many of those issues, many of those other five suggestions could be dealt with by letting the users design the content. They would make sure it is useful for them.

Last, we are developing a number of sites, user-designed sites, at UC Berkeley, by families, by parents, and by people with disabilities. We look forward to sharing that with all of you and thank you very much for the opportunity to comment.

DR. LUMPKIN: Thank you. I just have a couple of follow-up questions. Steve, I think I picked up your answer to who should pay, but I am not sure I heard you comment on who should lead.

DR. LANE: We are going to use the same questions as before?


DR. LANE: Just to try to add a little bit to what has been said already on this topic, I think so far the market has been leading, and I am not sure it is leading us down the right path.

There is no question that the private sector has the upper hand in terms of financing. I think we need to re-evaluate that.

I think a number of the earlier speakers spoke to the idea that the government really has some responsibility here in terms of setting standards.

I think it needs to go beyond that. As I suggested, I don't think that the provider groups that are out there, organized as they are, from large to medium to small providers, are going to be able to keep up with the demands.

I think the leadership needs to come from, I believe, the government to help define what will be required of providers and health care organizations to meet these standards.

Then the payment probably needs to be appropriate to the size of the organization involved, that single or small medical group practices are not going to be able to pay to enter this game in the same way that a Kaiser or even a Palo Alto Medical Foundation may be able to do so.

I think there needs to be a bit of a sliding scale built in here from the provider perspective.

DR. LUMPKIN: Mary, would you like to comment on who you think should lead this effort?

MS. CAIN: I think that there needs to be a fair amount of public private partnerships. I think that the government can lead by mandating as the 800-pound gorilla in terms of Medicare reimbursements and HIPAA mandates and things like that.

I think that the push back from private industry may take that into a significant long-term battle. But I think that a lot is happening already in the market that is trying to create this infrastructure, and that the leadership is around creating appropriate collaborative relationships and alliances, and that is being modeled in the health care market place itself already.

That is what is happening in terms of e health. Who you align with will determine whether or not you are successful.

I think that I heard a statistic somewhere that the majority of information on line is created by pharmaceutical companies, of health information on line is created by pharmaceutical companies.

I do think that they have the deepest pockets and have, in the long run, the greatest interest in mining health information on line.

Not involving them, I think, would be a big mistake. I am not sure exactly how you would structure that relationship so they don't actually end up taking extreme advantage of that information.

I do think that they have the biggest amount of money, so I think they could be the ones who could fund a lot of this work in a structured environment that would work out for everyone.

DR. LUMPKIN: Linda, I think I heard your comments about who should lead. The question is, who should pay.

DR. NEUHAUSER: Well, I think the payment should come from many different sectors. I think we have heard that over and over, that the payment has to be shared.

Certainly government should put a substantial amount into this. It is extremely important in all the health and wellness sectors.

I think that we should find ways to partner with industry, foundations, too, even community organizations.

One of the things I am seeing in California is that a lot of the development of the infrastructure, if we really use a participatory, democratic approach here, can be done at local levels.

So, it doesn't have to be government or business that is building the infrastructure. With self authoring tools and the like, anybody can get involved in this.

I think we need conceptual leadership. We need a lot of different kinds of leadership, and the payment should be spread out, too.

DR. LANE: Just a brief follow up. We have talked about public private partnerships coming from the not-for-profit side of the private world.

I think we also have to think about how to arrange partnerships between the for profit and not-for-profit sector.

We certainly have experienced this locally, trying to be a thin margin not-for-profit health care provider in the middle of Silicon Valley.

It is hard to hold onto some of our best people and to continue to develop our systems. I think while deep pockets are clearly in the private for-profit sector, be it the pharmas or the for-profit sectors, that we need to think about how to manage the relationship, I think, between the for profits and not for profits, so that we can continue to develop tools that meet everybody's needs, that are not purely driven by the desire for profit.

MS. CAIN: May I just add one comment? The other thing I would add is that, there is no such thing as a linear value chain any more.

Organizations are aligning differently than they have ever done in the past. Just because a pharmaceutical company may be supplying drugs doesn't mean they also won't be receiving information, and that what is being created instead is information value networks, and that the government and this committee, as a convener of those that might participate in those networks, has the ability to actually frame the discussion and take the leading role in that way.

DR. LUMPKIN: Other questions?

Let me ask a follow up. Actually, I have two. The term, public/private partnerships is getting to be a buzzword.

The way standards have been adopted so far in this process through HIPAA has been the development of the standards by essentially public private partnerships, the standard development organizations, and then they have been anointed through a governmental approach.

This is different than other markets, where there has been a very strong set of players, such as the automobile industry with the big three adopting certain standards for electronic data interchange, or the airline industry and so forth.

Is this consistent with what your vision is of leadership in the public private partnership, or do you envision something else? A concept of the partnerships being the standard development organizations which are a participatory approach and then, when there are multiple standards, then having one of those anointed, as opposed to government just going out and developing a standard de novo.

MS. CAIN: The example I would use is the internet health care coalition, high ethics and health on the net, in trying to create ethical guidelines for health and health care web sites.

These were three separate initiatives that were making an effort to, using health on the net as an example, for a seal, for fair information practices and principles around privacy and ethics on line.

The Internet Health Care Coalition has a large group of many different individuals from both public and private organizations, and then also High Ethics, which was an industry driven, market driven attempt at avoiding regulation, in my opinion.

Those organizations all came together and decided amongst themselves that they would create a collaborative effort and one voice and one initiative. This was announced last month, or earlier this month.

As leaders, what they have done also is involve the government and industry in such a way that they looked to the government, then, to anoint the final set of standards.

They have so much buy in from industry, and they recognize it as such a marketing effort on their part as well, that if they were not to participate, that they would look like fools.

It has got the government seal of approval, but it is also such a market driven approach that there is no way they can't participate in this without being exposed to consumers. Blackford, I know you are involved in that, too.

DR. MIDDLETON: To answer your question, should it be a government-developed standards process or standards developed from a government initiative versus the existing public private partnership and centers development, it should definitely be the latter.

The government is still only one more player at the table. Not recognizing these market forces, if the government tried to come in and say, here is the standard developed de novo in the abstract outside of that existing process, as trying as it can be, I don't think that would work.

I think Mary's points are right on. If the government as a payer, for example, is at the table as one more party, self interested in arriving at those standards which can spur the adoption of this technology or these initiatives, that is the best role.

DR. LANE: In addition, I think it is going to be important, the role it can play, which no other player at this table can play, is to ensure the compliance with these guidelines, to help.

The net recommendations are a case in point. Just because an organization might sign that and put that seal on their web site, it doesn't mean that there is any legal need for them to actually follow that.

I think we need to create an environment with governmental regulation to ensure that those have teeth.

DR. NEUHAUSER: Another comment, if I may, about disability standards, which we have section 508 of the work force investment act.

Those are federal regulations now, but getting the out there to all the states is another issue. I think the Federal Government can have a role in making sure that some of these things get out, helping states to implement them.

MR. BLAIR: Our third testifier, could you tell me what your first name is?


MR. BLAIR: Linda, okay, I was really impressed with the perspective that you added. I guess I kind of feel somewhat guilty, as you kind of revealed the perspective of the report in failing to understand and appreciate a broad definition of health and health care, as well as the fact that when you told your story about what consumers really wanted and individuals really wanted, those needs turned out to be somewhat different from what many of us in the health care professions necessarily define.

Is your report available. I know you gave us the testimony, but I think I would be really very interested in hearing what the individual consumers were saying they were interested in.

I think that might help the committee have a broader perspective, a deeper perspective, of what the community needs are for health.

DR. NEUHAUSER: There are a number of articles that we published and I can make those available to you. I think they will summarize it pretty well.

DR. DEERING: This was maybe an open question for all the panelists, and it picks up on something that Reed himself said, but which I think others have echoed.

A lot of the barriers to moving forward are psychological, sociological. If that is the case, then the question is, what is your priority recommendation for the Federal Government in addressing that barrier?

Related to it, I guess, would be, in the presentation of the report, as it is finalized and given to the Secretary, it will, of course, be circulated and picked up by the media.

Given its psychological impact as much as its specific policy impact, do you have recommendations there as well?

MS. CAIN: I think if you don't move soon, you are going to be surpassed by the market. I think that technology assessment is something that has been done in health care in a retrospective and ad hoc way.

If this committee does not speak to how this will take place, that the market will decide how this takes place with the incentives of the market, which is usually often to make money.

I would echo what Peter said initially, which is move. Look for low hanging fruit. Look for the early adopters of this system and start getting it populated and then get that road map that everybody has talked about created, and start moving.

DR. NEUHAUSER: One other comment is, I think it might help to have some kind of visual presentation here. Right now, in this format, it comes off as being maybe overly conceptual with lots of lists and things.

It really doesn't show how these three domains are linked. So, maybe some way to show how they are linked and some way to kind of show that as a map, so you go from the overarching, say the fundamental definition of health, all the way to the grass roots users.

Is there some way to show that visually and show how the different sectors are -- how the different domains are linked, and then how they are linked to the different public and private sectors.

Maybe put some specificity of recommendations, so that someone can kind of look at that as a map and say, oh, yes, there are some different domains, different sectors, and they are proposing this and that and the other.

I think you get a better sense with a road map, whatever, diagram of what this is about.

DR. LUMPKIN: Thank you very much for coming. We are going to take an hour for lunch. We will reconvene at 1:00 o'clock. Thank you.

[Whereupon, at 12:00 noon, the meeting was recessed, to reconvene at 1:00 p.m., that same day.]

A F T E R N O O N S E S S I O N (1:16 p.m.)

DR. FRIEDMAN: Why don't we get started. I am Dan Friedman with the National Committee on Vital and Health Statistics and Massachusetts Department of Public Health.

First thing, why don't we go quickly around the room, since we do have some people who weren't here this morning.

DR. ZUBELDIA: Kepa Zubeldia with Clarion Corporation and member of the committee.

MR. RODRIAN: Mike Rodrian, California Department of Health Services, Center for Health Statistics.

DR. SOLET: David Solet, Public Health Seattle and King County.

DR. BETHELL: Christina Bethell, The Foundation for Accountability.

DR. NEWACHECK: I am Paul Newacheck with the University of California at Berkeley and San Francisco, and I am a member of the committee.

DR. STARFIELD: Barbara Starfield, Johns Hopkins University and member of the committee.

DR. MIDDLETON: Blackford Middleton, chief medical officer at Medscape.

DR. NEUHAUSER: Linda Neuhauser, School of Public Health at UC Berkeley.

MS. MC CAFFREY: Kathy McCaffrey, California Association of Health Plans. I am the vice president for health care data and operations.

DR. WEIZIMER: Rob Weizimer, data dissemination branch, National Center for Health Statistics.

DR. HENDERSHOTT: Jerry Hendershott, National Center for Health Statistics.

DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, staff to the NHII work group.

DR. DEERING: Mary Jo Deering, Office of Disease Prevention and Health Promotion, lead staff to the NHII work group.

MR. BLAIR: Jeff Blair, vice president of the Medical Records Institute and member of the committee.

MR. QUINN: Michael Quinn, Center for Health Statistics.

MS. MOYA: Rita Moya, National Health Foundation.

MR. LEE: Paul Lee, private internet health care consultant.

DR. GARDNER: Reed Gardner, University of Utah.

MS. DANI: I am Ellen Dani(?), London School of Hygiene and Tropical Medicine.

MR. CROUCH: Jim Crouch, director, California Rural Indian Health Board.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics and staff for the committee.

MR. JOBE: Brad Jobe, Department of Health and Human Services, Office of the Inspector General.

MS. BRIGHTMAN: Lisa Brightman, National Center for Health Statistics.

DR. FRIEDMAN: Thank you. We are going to have a little bit of shuffling of the schedule. We are going to start out with Mike Rodrian followed by David Solet.

Professor Brown is actually going to telephone in. Then we are going to take a break and then we will move to the second panel. After that, we will take a break and move on to Jonathan Fielding and Rita Moya and Jim Crouch.

Why don't I take just a very few moments to introduce this afternoon's session.

Agenda Item: Overview of Interim Report: Shaping a Vision for 21st Century Health Statistics.

DR. FRIEDMAN: Hopefully most, if not all of you, have read the interim report on Shaping a Vision for 21st Century Health Statistics.

This process was started in 1998 with the encouragement of Ed Sondik, director of the National Center for Health Statistics.

There are three partners in the process, National Center for Health Statistics, the U.S. Department of Health and Human Services Data Council, and the National Committee on Vital and Health Statistics.

The process has a three-fold goal. The first goal is to develop a vision for health statistics in the United States for the 21st Century.

We are hoping that that vision reflects a broad definition of health, all manifestations of health and the health care system, reflects the transactions between the population's health on the one hand and the health care system on the other, and other determinants of health, social and economic policy, environment.

Third, the vision addresses the relationship and the potential synergy between state, local and national data systems as well as public and private.

A second goal of the process is to describe and define the disciplines and components and other elements needed to implement the vision.

The third goal of the process is to set forth clear criteria and a process for evaluation a health statistics system, both now and in the future.

The process, as I said, started in 1998. The first part of the process was an attempt to really take stock of where we are.

We did that through initially commissioning a series of papers. Those are available on the NCVHS web site. I really recommend them to you.

There is one paper on health statistics systems in the United Kingdom, Canada and Australia, written by Jennifer Zelmer of the Canadian Ministry of Health Information.

There is another paper by Sharman Black and her colleagues at the University of Manitoba on their integrated population health information system.

There are a couple of other papers there as well, focusing on met and unmet health statistics needs in recent national health policy debates.

We have also had a series of local discussions in Albuquerque, New Orleans and Harrisburg, and a series of national discussions as well, in Washington, focusing on health trends and associated health information needs.

We also had a National Academy of Sciences workshop last year.

The interim report is an outgrowth of all of those processes, and for us, the interim report is really an attempt to summarize what we have learned through our consultative process.

There are several themes that really came out very clearly in the consultative process. One was, in this country, a lack of clarity about what we mean by health statistics, in fact, a lack of definition.

When we went looking in the literature, in fact, the only definition we could even find of health statistics was from John Last's dictionary of epidemiology. John Last teaches at the University of Ottawa.

The definition that we developed, the interim definition that we developed for our own purposes is that health statistics constitute health data that can be generalized to a known population of individuals, of organizations or institutions.

It can be used to design, implement, monitor and evaluate specific health programs and policies, and that, properly organized and communicated, enable us to assess local or national health, mobilize to improve it, and evaluate the success of those efforts.

In other words, for us, health statistics is policy and program related. We are very much purposefully not trying to parse different definitions, different overlapping definitions in terms of what is health statistics, what is assessment, what is surveillance, et cetera, et cetera.

We are taking this definition as what we are working with and going with that.

Something else we learned is that the people with whom we consulted felt very strongly that, in the United States, health statistics has a great deal of unrealized potential.

People pinpointed three reasons for that unrealized potential. The first reason is our failure up until now with coming to grips with the health statistics-specific privacy and confidentiality issues.

We are at least starting to come to grips with those issues, with privacy and confidentiality issues in terms of medical records, in terms of public health surveillance, but not in terms of health statistics.

A second reason for the unrealized potential, as we all know, has to do with the multiplicity of data silos, categorical data silos, local, state and national data, proprietary versus government, as well as the multiplicity of data standards where they exist, as well as a lack of data standards.

A third reason for the unrealized potential derives from our lack of a coherent organizing structure in health statistics, both a conceptual structure as well as a planning structure.

The results of this, the people with whom we spoke felt, was that we have an abundance of health data and, in that way, we are certainly lucky compared to many other countries.

At the same time, that health data are not translated to the extent that they could be in terms of what Robert Spassoff describes as either health information or health intelligence.

That is certainly evident in terms of issues around local, state and national comparability. It is certainly evident in terms of smaller populations, in terms of special need populations, and it is certainly evident in terms of our lack of data on health, as opposed to illness.

One of the things that we have really been looking forward to in terms of today's session is hearing from you about local, state and national comparability, and particularly local and state as well as smaller population needs.

We are cognizant of the extent to which any planning document, any planning structure that emerges from this -- that any planning document or any planning structure that emerges from this -- needs to very much have those built, have state and local needs built as the base.

The document includes in it, our interim report includes in it a series of principles for moving forward. They are very general principles and, at the same time, we feel that they are important.

Privacy and confidentiality, and the need to develop the equivalent of a fair information practices for health statistics is very much at the beginning.

Next steps include a couple more regional hearings, one in Raleigh, North Carolina and one in Washington, D.C.

We are hoping to also develop essentially a market basket of health statistics-related privacy and confidentiality issues and potential solutions. Then, develop a final report, based upon our input to date.

We are very much aware of our need to try to operationalize what we have laid forth in a general vision, and try to turn this general vision into something that can really be used for planning state, locally and nationally. It is something that we really look to you, among others, to assist us with. With that, I will turn it over to my friend and colleague, Mike Rodrian.

Agenda Item: Panel 3. State and Local, Public and Private.

MR. RODRIAN: Thank you, Dan. My name is Mike Rodrian. I am the director of the Center for Health Statistics in the California Department of Health Services. I am also the state registrar for vital records in California.

I also come to the hearing as a member of the National Association for Public Health Statistics and Information Systems, otherwise known as NAPSIS, which represents 57 states, territories and independent registration areas in the United States.

Agency members of NAPSIS include the directors of state centers for health statistics, registrars of vital records and information system managers in the health statistics arena.

I want to thank the National Committee on Vital and Health Statistics, as well as Dr. Lumpkin and Dr. Sondik for this opportunity to discuss how we as a national began shaping a vision for 21st Century Health Statistics. You truly are asking us to think globally and act locally.

As a state center director and a representative of NAPSIS, I also congratulate you on drafting an excellent report addressing the critical issues that face we, in the state, and certainly local public health agencies at this time.

We are all clearly struggling to meet the diverse health information requirements of our public and private partners in this 21st Century, for the most part, using the disparate array of independent legacy data systems we developed during the last century.

A particular strength of the report is that it clearly outlines in one national document the essential principles for all to uphold as we work together to improve public health data, statistics and information systems throughout our communities, states and the nation.

I am particularly pleased with the mention of international systems and standards for organized systems there.

On the other hand, as the son of a Berkeley trained engineer, I gravitate toward actionable plans and visible road maps.

Therefore, please excuse the sprinkling of comments that I make in my remarks that depart strictly from the expressed vision and move more toward the issues of implementation.

With substantial course work in philosophy, I can appreciate the abstract, but apparently, genetically, I am predisposed toward action.

First, I will make some general comments. I guess one of the key things I want to talk about is that economics derive much of our behavior.

This is true in our private lives, and it is certainly true in our professional lives. Economics is often measured in dollars. However, it is also about where and how we spend our time.

Principally, though, it is about values, indeed, about how we use societal mechanisms to drive motivation to achieve what we value.

As professionals in this field, we must recognize how to install and operate economic motivators to drive this system in our desired direction.

My shorthand for this is an adaptation from Frank Lloyd Wright's axiom, form follows function. My version is, form follows funding.

In other words, if we want substantive change in health information systems, we must change the motivators, and we must focus on specifically who gets what value and who pays.

Indeed, remember that value is not all about money. It can also be about job satisfaction, a job recognized as well done. There are lots of different motivators that are valuable to people who are engaged in this system.

In the configuration of our data structures, as in architecture, form also does follow function. Funders often perceive, though, and define value narrowly, provide narrowly focused funding. Thus, the forms of information systems follow funding.

This is especially true in governmentally funded data systems. The current silo development of our health data information systems demonstrates this.

As we become accustomed to the 21st Century, more of us are beginning to see interrelationships that could add value to our efforts and to our collective health.

Changes in the cost and mobility of electronic systems are also changing collective perceptions of what is possible.

We could say now that form follows perceived value. I think we need to focus on that as we move forward.

What is needed now is a common vision of what value can be extracted from systems that are, or can be, better integrated.

Your vision documents are an excellent start. At the same time, though, we need to pay particular attention to demonstrating and marketing the value of the information to be gained by those from whom we gather our data.

A good information system should be perceived as a thing of beauty. It may be complex, but it should appear simple and be easily explained.

It should have a good framework with strong supporting architecture. Like any good structure, it should be built using rigorously tested standards for each of its basic elements.

As the Society of Automotive Engineers determined long ago, it should also be built with common fasteners, so that it can easily be attached to other structures.

Finally, it should have utility and it should provide value to those who support it. I would like to focus a little bit on that last statement, provide value to those who support it.

Those of us who work on the design and function of information systems need to spend more time designing end value to be returned to those who labor to provide us the data we need.

As this state's registrar for vital statistics, I know how valuable the data I receive are, when it is packaged and provided to a host of users in the state and throughout the nation.

However, I have begun to realize that I spend very little time returning value to the hospitals, doctors, nurses, clinics and funeral homes critical to my data supply.

A beautiful home is expected to return immediate value to its builder and also to return long-lasting value to the person who buys it, lives in it and keeps it up.

As John noted, this would include employers. I need to make sure that my suppliers of data receive something of value for their efforts.

If they do, they are much more likely to provide me with accurate timely data. This approach recognizes the universal truths of economic arguments, that you get value when you give value.

In this area, I would especially like to see the NCHS and CDC, together with HCFA, begin to use their pulpit and their economic weight in the health care arena to start the ball rolling.

Putting together public health data with HCFA, Medicare and Medicaid data, with the powerful influence that that could bring, would help the rest of our health professional community.

I would like next to comment more specifically on some of the ideas that you have outlined. Clearly, the 10 principles in the 21st Century vision document are essential to our mutual success.

Several factors are critical to the effective implementation of this vision by states and local communities.

Principle one we have talked about some, on privacy and data security. It has to be a cornerstone for implementing this vision.

However, I think we need a better balanced approach. We all recognize the need to protect the data we gather about individuals from inappropriate disclosure.

We provide security because of real end perceived situations where an individual business with access receives a value at the unwarranted personal expense of the individual named by the data.

Our difficulty and our cost in keeping the data secure, though, rises in direct proportion to its perceived value to those who wish to use it at another's expense.

As a society, we can reduce the net value for these socially inappropriate uses, by instituting clear and significant disincentives for any misuse of personally identifiable health data. I think principle one should speak to this.

Also, I am concerned that this principle appears to equate public health monitoring with research. This is a problem for most state and local public health agencies, which conduct relatively little health research, but often use data to follow up with individuals likely needing assistance.

Although these data may also be valuable for research, it does not follow that all data collected is for research. Principle two should make this clear.

The conceptual framework outlined in principle two is necessary to effectively integrate our legacy data islands to meet emerging data demands.

I commend the recent steps that HHS, CDC, NCVHS, ASTO, NAPSIS and a lot of other alphabet groups have taken toward defining the national standards-based, web-enabled information infrastructure.

As a state director and registrar, I particularly value the standards put forth through CDC's NEDS cipher, et cetera, project, as well as that modular approach they have taken.

In order to succeed, though, we will need to leverage the financing and the human resources necessary to implement that vision.

Principle three is great. I don't think I need to say any more. We all enjoy the flexibility when it comes to providing data.

The importance of principle four must not be underestimated. As I commented earlier, priority attention should be focused on creating value for those who provide health data.

In particular, we need effective means to return data quickly to each data provider, along with an enhanced ability to view their own data in a meaningful community, professional and geographic context.

For example, I envision a business-oriented web site that would support electronic submission from those reporting health data to our department, irrespective of where, in the department, the data goes.

The same site should add value to the reporter by reporting back information. I think principle four should include mention of adding value for data suppliers.

I heartily agree with the necessity for compatible standards as presented in principle five. CDC has demonstrated considerable success working with states and local partners to develop NEDS and ciphers, as I mentioned earlier.

However, I think we need to go further. The principle should mandate participation in the established national standards setting bodies that have, to date, established X12 for administrative and XL7 for non-administrative health data. This can be our equivalent of the SAE.

I recommend both bodies devote even more attention to developing fasteners to provide linkages between the administrative and non-administrative data.

Although labor intensive, it is hammering through the details like this that allow a strong structure to be built.

To finance this effort, I recommend that a required percentage of each federal grant for state of local health program activities be spent on establishing and implementing these standards. This would include grants for public private partnerships as well.

The Health Care Financing Administration has used such incentives with great success for the past 30 years, giving enhanced matching funds to systems that use electronic methods to improve Medicaid administration, for example.

Many cities require developers to invest a certain percentage of their project budget in art work to enhance the beauty of the community.

If we want beautiful information systems, we must set the standards, invest in them, and leverage them with economic principles.

Principle six outlines the mutual goal of unitary data collection for multiple purposes. To meet this goal, it is essential that the nation create clear fiscal incentives for data standardization and integration by state and local partners, again, both public and private.

Particular priority must be given to incentives for those providing health administrative and service delivery data that can also be useful for monitoring health status.

Complex issues arise in the practical application of this principle and we need a transition plan.

One approach has been to try distributed but linked systems, as a bridging step from silos to either unitary systems or to regularly linked distributed systems.

I recommend we gather and carefully consider the best scientific evidence available regarding criteria and methodologies for linking data regularly from two or more data bases to establish unique identifiers. This evidence base could then assist in the development of national guidelines.

We should capture what criteria are most commonly available that produce reliable results. We should address what steps should be considered regarding the inevitable questionably-linked data.

A first step toward this could be a national agreement upon a set of standard demographic data items, such as California's common core data set, earlier discussed by our department during previous committee hearings in San Francisco on HIPAA standards.

As a state center director, I cannot emphasize enough the importance of principle seven. Local communities and statewide stakeholders need us to provide maximum user friendly access to health data and information. This is also part of returning value to those providing the data.

I believe we should focus more time on data sets and tools that would provide graphic presentations of aggregated data including GIS systems to the public via the web at the zip code level.

I am concerned that principle eight is too abstract. Without stable and well managed resources, the vision will remain just that, a vision.

I recommend that 10 percent of each federal dollar designated for state or local health program activities, including administration, service delivery and health status assessment be allocated to establishing or adapting current systems to meet the standards embodied in the vision document.

Again, if beautiful systems are desired, funding must be leveraged from existing streams.

In some ways, this has already begun to happen. Many strides were taken with the Y2K systems changes. HCFA has begun to look more globally at the economics of its mission and to recognize that public health should be a meaningful added value partner.

An encouraging step is the leveraged financing available for immunization registries through HCFA.

Many more strides can be taken as attention and substantial sums of money are invested in HIPAA compliance. Leveraging these investments to include public health data could return enhanced value to us all.

This national document and national forum could further encourage this economic lever. Creating and maintaining health data and information relevant to policy, as outlined in principle nine, is much easier said than done for most states and communities. Nevertheless, it is very important.

Some question the value of even collecting data that cannot be immediately linked to decisions and subsequent action.

I would like to see federal assistance recommended in this document regarding how to become more policy relevant.

This principle should contain the concept that would today drive the Federal Government to develop and publish a matrix comparing local health data required to assess Health People 2010 objectives with the data that currently exists, for example.

Documenting the gaps would support local and state agencies in data development and integration.

How can we accomplish this far-reaching 21st Century vision for health statistics? As a start, principle 10 succinctly outlines the essential need for and potential opportunities to collaborate.

The focus on incentives that foster collaboratives national, state and local efforts would help.

To succeed, we must demonstrate in economic terms the value gained by all those involved, individuals that supply their data, those who collect it and report it, the analysts, the epidemiologists, the doctors, the funders and the decision makers.

The scope of this effort could bog us down. I therefore encourage you, from your national vantage, to more clearly address the economic value expected from such collaborations.

I also hope that documentation of existing collaborations operating at the state and local level will find their way into a strategic plan that would follow this vision, along with recommendations for replication funding.

I thank you for the opportunity to address these comments to you today. I would like to repeat my opening remark, but with a twist.

In the opening I said, I think we should follow the political axiom, think globally and act locally. My twist for health is that we need to look locally to see what works, and then act globally to achieve a better national health standard for us all. Thank you.

DR. SOLET: Hello, my name is David Solet. I would like to start out with a little bit of compulsive behavior.

Because I am not in the original order, make sure you have a copy of my handout here. It looks like you do. Great. Compulsion over with.

My co-authors on this presentation, which is a reaction to the interim report, are Alonzo Plough, who is the director of Public Health Seattle and King County, and Jim Krieger, who I work with. He is a senior epidemiologist in the unit that does community assessment.

My perspective is, where we are coming from, we are a local metropolitan health department that does community assessment.

Really, what I am welcoming is the chance to comment on the interim report from that standpoint of local folks who are doing assessment in small areas.

So, first off, I would like to make a few comments about the scope and organization of the report, and then segue into specifically what local health departments need to fill out this vision of using 21st Century Health Statistics, our perspective on that.

We view this as a great opportunity to revamp a system that needs work, and to build a consensus about what it really needs. We are really glad to be presenting the local perspective at this meeting.

In terms of scope and organization of the report, we were really impressed with its comprehensive outlook and its relevancy to local health data.

It really was a broad sweep and it was a candid inventory of the shortcomings of the system, which local health folks are very experienced with.

It lays the groundwork, therefore, for sweeping change. I think where the difficulty lies is how that sweeping change will be accomplished and what shape it will take.

Here are just some questions we come up with in terms of addressing this in the real world. Where is the incentive for a sometimes fragmented federal system to integrate into a new system.

Will local needs be representative post the visioning process in some ongoing way as the system develops further.

Some of this question has been addressed already, is this a zero sum scenario, or are additional resources going to be called for and then where will they come from.

We would also suggest a stronger framework to justify the enhanced system in the final document.

I guess what we saw when we read this was that this proposal is going to probably face a number of political challenges.

Certainly some of the things I am going to outline in a few minutes will have their political challenges, and we are hoping that a framework can be laid so that end users of the data and the public will be able to sign on to what a new system would look like.

Some specific suggestions along those lines are some more background and perhaps a historical perspective on the upstream movement of data collection, starting out in the 17th Century with deaths data and then moving upstream as time went on, in the 19th and 20th Century to incidence data and recently with health behavior data. Now people are looking much more at social determinant data.

Perhaps some more concrete examples on how data can improve health status. I notice that one of those examples had to do with our health department and I was glad to see that.

I would also hope that there would be more examples that we could draw on there. This is a rather awkwardly stated point, for which I apologize, but we didn't see necessarily how those principles grew out of some of the other areas of the report.

We just would have liked to have seen more about what they were based on, although we thought they were a very strong piece of work and we definitely agree with them.

With the remainder of the proposal, I would like to just talk a little bit about those next steps, about how 21st Century health statistics will play out on the local level.

There are seven areas I would like to talk about. One is new data sources, data set linkage and integration, extending national data to the local geographic level, new data dissemination resources, standards for data and analytic methods and support for developing local data meaningful to the community.

I recognize that many of these, that the document itself takes steps toward addressing many of these points. We are hoping that they can be filled out, and also research on new assessment measures.

So, for new data sources, one thing that would really be helpful would be disease registries. For instance, we don't really know what the incidence of diabetes and asthma is in our community.

Also, more comprehensive environmental exposure data. Local health departments are called on more and more to deal with environmental issues. That can only be a trend that is going to be increased.

There is a huge hole in some of the data that we see. In some states, notably in ours, we don't have any outpatient or emergency department reports, which means that, aside from hospital admissions, we don't really know what happens to people if they are not admitted to the hospital. We could use this opportunity to sort of fill out that area.

Also, from the local community level, there is a lot of interest in more detailed race ethnicity data. We don't really have adequate numerator and denominator data for many of the secondary data sets that go into health assessment.

For example, although there is detailed data on race ethnicity that is collected in deaths data, that hasn't been validated as far as I know.

Also, the denominator data for intercensal years are not there.

Along those lines, local health departments have to deal with detailed small area rates, and in intercensal years, basically what we do is go out and purchase those denominators from commercial providers.

We make an individual determination as to what the validity of that data is. There is an unknown error that is built around those population denominators and it would be nice to see some standards around that.

Finally, it would be useful to have more social determinant of health measures, since that is a growing area of assessment, and since that has such a great power to explain differences in health status between populations.

There is some social determinant data in the census and we will be happy to see that when the 2000 census comes out. There is virtually none of that in intercensal years. It is very spotty.

As far as data set linkage and integration is concerned, again, some sort of linkage between environmental exposures and health outcomes would be extremely useful on the local level.

Currently, what happens when we do an analysis that has to do with an environmental health concern, we are almost always in the position of having to say, we don't really know what the exposure status of the people involved in this study are, aside from some very gross measures.

Another example of how linkage would really help us would be to link health plan Medicaid data sets to population based data, to assess prevention activities in Medicaid or other managed care settings, to assess the impact of clinical prevention strategies on the population, and to monitor population-based prevention and health outcomes related to health care system delivery changes.

Another thing that would really help local assessment would be to extend national data sets to the local geographic level.

This is a model that is actually working quite well for us now in behavioral risk factor surveillance system data, where we are able to take a very useful survey and to oversample on the county level, to be able to come up with small area estimates on behavioral risks, health care access and health status.

That capability doesn't exist for a number of other data sets that would be useful, such as the National Health Interview Survey, which has a number of morbidity measures that would be useful for us, or the National Survey of Family Growth.

We are able to get some small area estimates with PRAMS but we are not actually able to do any oversampling in our county.

Again, it would be useful to have a unified system for getting that local area data.

Currently, there are very creative data dissemination projects going on in several localities.

I would like to take this opportunity to suggest that there be some federal support for standards and for implementing those in places where they have already been developed.

Dan has been involved in the Massachusetts health department. There is Mike in the Missouri health department, and our health department has developed VISTA. These are all programs that provide local assessment data to local communities, either through the public or through public health professionals.

There have been also some creative efforts to do user friendly dissemination of local data. In our state, the state health department provides vital statistics data on a CD, which is sent to every local health department in the state.

It would be great to see more of that going on, and also some specific support for making that data available.

When we do use national data sets for comparison, it would be useful to have easy access and technical support on those national data sets, and also to support more timely availability of data sets in general.

Right now there is a lag time. That always affects our credibility and our ability to deal with requests for data.

In terms of standards, data sets now have a multiplicity of different variables that are available. For example, hospital discharge data in our state -- not in all states -- does not contain race and does not contain any detailed address data, only reported zip code, which makes geocoding more difficult.

The lack of race data also makes looking at health disparities more difficult. That data is available in some states that have chosen to develop their systems that way. Right now, hospitalization data is really developed on a state-by-state basis.

It would be nice to see data sets like this have standards that are developed by sort of a national body that could help in providing these variables to all states.

Also, different states use different statistical measures for small areas. Sometimes that is different from what the Federal Government is doing.

For instance, we usually look at rates with confidence intervals. Yet, we don't use data smoothing. There has been a lot of really interesting work with data smoothing on the national level, and it would be good to be able to explore other possible methods to pursue.

Again, we would want to enhance the quality of existing social determinant data. Right now, the education and race data that is reported on even vital certificates is sometimes of -- the validity of it has come into question.

Sometimes it doesn't have really good agreement what is really going on. We would like to be able to strengthen the collection of that, also, in terms of getting back to other sources of data, to be able to have intercensal year collection of education data, so we can look at health disparities.

Also, develop software for geocoding, there are some software needs as well.

Finally, some efforts have been going on to facilitate county-to-county comparisons, which we found very useful. It would be useful to bring a set of standards to that activity.

Along with providing a centrally located standards and data, I think there is also room for supporting local communities in developing data that is relevant to the community.

Local health departments are closest to the community. In some places, they are reaching out to develop assessment indicators that are specifically relevant to the community.

Some examples here are -- drawing some examples from our county -- are the recent communities count project, which grew out of a coalition of human service and public agencies, and actually developed community indicators from public input, including a population-based survey, focus groups and technical expertise.

The outcome had been surveys that collected new data that were of interest to these communities. The report galvanized support from elected officials and the public and focuses on disparities in public health.

Another example actually in the document grew out of the ethnicity and health survey which, again, at the community request, was a survey of Asian subgroups, African Americans and Latinos in King County, that was very similar to the BRFS.

The outcomes have included a community benefits program that is bringing screening to underserved communities and also a forthcoming report on discrimination and health care.

As far as the research component is concerned, the example I chose was really environmental health data. For that, we would suggest clarifying the connection between environmental exposures and health.

On the basis of that, initiate population-based collection of appropriate exposure data and the development of assessment tools to help local health departments assess environmentally-caused disease.

In summary, we really support and understand the overwhelming task here, and applaud the comprehensive inventory and summary of the existing system.

We know that we all recognize that real-world questions remain about how this can be implemented. We suggest a framework for justifying the data needs, and that that framework be strengthened.

Local needs, in terms of next steps, should include easily accessible and locally meaningful national data, national support for local data development and data set integration.

In closing, I would like to thank you for the opportunity to address you and this group.

DR. FRIEDMAN: Thank you, David. We are running a little bit behind. Since our next panel has two instead of three speakers, I think it will all even out in the end. Patrice, are you gesturing?

PATRICE: I have Rick Brown on the phone.

DR. FRIEDMAN: Are we going to be able to hear him?

DR. BROWN: Hi. I am really sorry that, between United Airlines and the weather, I was unable to get there for the hearing today. Is the timing good? Would you like me to make a few remarks?

DR. FRIEDMAN: Please do.

DR. BROWN: I and my colleagues at UCLA have spent quite a few years and a good portion of our professional and research work during this last about 14 years, developing state and local data, to inform health policy making in California.

Out of that has come a very clear understanding of both the value and the great limitations of existing federal surveys to meet these needs.

I provided written testimony that goes into that in detail, and I won't do that now, unless you want me to.

The main points that I wanted to come to were to relate to you the experience that we have had in developing the California health interview survey.

In many ways I think both we and many people around the country are seeing this as a potential model for state health surveys and one that reflects a tremendous degree of collaboration.

The California Health Interview Survey, or CHIS, really began as a collaborative project of the UCLA Center for Health Policy Research, the California Department of Health Services and the non-profit Public Health Institute, which is a public health research and service agency.

We started the survey because we needed a survey that would produce information relevant both to state and local health issues in California.

In conducting a very extensive outreach campaign to obtain input from potential users of such data, we learned a great deal about the kind of information, the topics, the content, that they were particularly interested in, and their existing dissatisfactions with available data.

We also needed a sample that would achieve two purpose, one to produce local level estimates, particularly at the county level, although there was also a desire for subcounty level estimates as well.

Secondly, good estimates for California's very diverse population, an ethnically and racially extremely diverse population.

To a large extent, the objectives are competing. In order to generate good county level estimates, we need to spend a lot of our sample that we are now about to undertake in this survey.

We need to spend a lot of that sample on relatively small counties throughout the state that are predominantly white Anglo.

To generate good estimates for ethnic and racial minorities in the state -- Latinos, African Americans, American Indians and Asian Americans in particular -- we really would need to concentrate that sample in relatively few counties where they predominantly reside.

We decided to meet these two objectives by designing a sample that, one, was very large, more than 55,000 households in the state would be sampled and, secondly, that could both tap into counties throughout the state, drawing samples from them all and, at the same time, have a large sample in counties that have large ethnic minority populations.

So, we have developed that sampling design and are about to launch the survey.

The content of the survey itself was shaped by a really, I think, uniquely inclusive advisory process that involved more than 150 advisors who participated in our advisory board.

It is chaired by the director of our state health department, and in six technical advisory committees, reflecting different aspects of the survey.

We also were very concerned that the survey be culturally competent; that is, that it be conducted, that interviews be conducted with people in language that they were comfortable in and that they could respond to directly, rather than through an intermediary or a surrogate respondent for the family.

We have engaged in a process of translating our questionnaires into six languages besides English for administration in California and also taking the entire survey through a cultural review, to identify potentially problematic questions.

This actually had an incidental benefit for the English language version, because it helped to simplify some questions that were otherwise unnecessarily complicated.

We believe this will greatly improve the quality of the information that we are able to obtain on all groups.

In future cycles of the survey, we expect to be able to allow local health departments to add questions of their own.

Even now, they can add additional sample if they want to improve the quality of the estimates that the survey will provide in their particular counties.

So, we have undertaken a very extensive process that has been very collaborative in many respects, including the collaboration between the university, with the state health department and a non-profit research organization, the inclusion of many different advisors representing a wide range of constituencies in the state, from local health departments to the state health department, advocacy organizations and health care provider organizations.

We have also engaged in collaboration with our funders. Our funders include both the state of California, which is funding us through a special appropriation, and a contract from the California Department of Health Services, as well as the California Commission on Children and Families.

We also have three very important federal agencies that are helping fund the survey, the National Cancer Institute and the Centers for Disease Control and Prevention, which are funding a cancer control and prevention module, and the Indian Health Service, which is funding an over-sample of the American Indian/Alaska Native population in California.

Finally, our collaborators also include the National Center for Health Statistics, which has not provided funding but has provided in-kind technical assistance, which has been extremely valuable to us.

We have also designed a very ambitious dissemination strategy for the data. Our dissemination will include both published data, which will be published providing data estimates in a standardized set of reports by geographic area, county, race, ethnicity, age and other factors, as well as other more in-depth kinds of studies.

Secondly, we are going to make the results available electronically. We are in the process of beginning development of an internet accessible interactive query system.

Users could get on line and request their analyses and get them in real time, in a format that they would find most useful for themselves, as well as public use data files, which will allow analysts -- more sophisticated analysts -- to be able to actually analyze data themselves.

Finally, we will also be providing very extensive outreach and technical assistance, technical assistance by phone and over the internet, and presentations that we plan to make around the state and probably nationally to introduce the data and how people can use it.

We plan workshops that will build on some successful experience that we have had doing technical assistance and training of community-based organizations in how to use data in health policy advocacy.

There will also be a CHIS research data center, which would be similar to the NCHS data center and the census data center.

It would provide qualified researchers with access to confidential data tapes under very restricted and protected conditions.

I think, in many ways, our experience may well serve as a useful model for other states and for national efforts to promote collaborative state and local surveys that help to also integrate data collection, population-based data collection across different levels of government jurisdictions.

It also points to what I think is a very pressing need that we have experienced, and that I am quite certain other states would also experience, and that is the need for both technical assistance and for financial support.

I believe there is a need for the Federal Government to recognize that producing state and local population-based data for policy making and for health planning should be more than a state and a local concern.

It should be a shared responsibility that includes the Federal Government and that there should be substantial resources provided by the Federal Government to promote collaboration, provide technical assistance and to offer states generous matching funding for such surveys.

I don't know if you would have questions or further comments.

DR. FRIEDMAN: Thank you, Professor Brown. We are lagging further behind than we should. I am a little bit concerned about people's schedules.

What I would suggest we do is move on with the next two presentations. Hopefully we will have time, before the 3:00 o'clock panel, then, for members of the committee to ask questions.

Why don't we start with Kathy McCaffrey and Christina Bethell.

Agenda Item: Panel 4. State and Local, Public and Private (Continued).

DR. BETHELL: I will just introduce myself while this is booting up. I know many of you, and some of you I don't.

My name is Christina Bethell. I am senior vice president at the Foundation for Accountability. For the last five years, I have spent my time working with consumers and experts and providers and policy makers to identify what we need to know about the health care system from the point of view of the consumer, how to measure that information in a sound and feasible way, and how to communicate it to them, so that they can use it to make better health care decisions. That is our main focus.

What I am going to do today is not necessarily comment on a point-by-point basis on your wonderful report, although I would be happy to do that in written comments later.

Rather, I will do what I think I was asked to do, which is share a consumer perspective, such as it may be, from the work that we have done, and also share with you our framework for thinking about the range of quality information and health care information that would be useful to collect, and then some data collection approaches that we have been experimenting with, that you might also find valuable as you proceed in your work.

FACCT's goal is to educate and mobilize consumers to understand the importance of health care and health care quality, their role in the health care system, to demand and partner in the development of a better health care system that produces better health ultimately, and also to demand and partner in the collection of data that is necessary to help them make better health care decisions.

Finally, be active partners in requiring policy changes, such as information disclosure, so they can be on the receiving end.

The ultimate suppliers, I guess, as Mr. Rodrian was saying, of the data that we are all talking about is the consumer.

My goal today is simply to bring up into your awareness and to have integrated into any report that you pursue completing, that the consumer is the key audience and ultimate source of data, and therefore, needs to be integrated in every way.

Also, then listen to what they have told us. We have done about 100 focus groups and have collected data on a couple hundred thousand consumers nationally through various efforts, asking them about their health care and health care experiences and what it is they want to know.

We come to this work very convinced that consumers really are able to play an active role in both assessing, providing information, valid information about health care, such as health care outcomes and processes of care and experience of care, and that consumers care very much about their health care.

They are very concerned about their health care, and they are very taken and interested in health care information, should it be collected and communicated to them in a reliable way and in a clear way.

These are just some statistics that we collected and others.

We also come to this work very humbled by what we think is more or less the failure of the efforts of the last decade and a half to assess health care quality and assess health care in America, and to have that information be actionable and useful down at the public level, including provider-based efforts, standards-based efforts and market-based efforts.

The reality that we are left with, after all of this, is that less than 25 percent of the insured population in America has any statistically relevant or derived information about health care quality. This is for HMOs only, through the HEDIS system.

There is even more limited data for people who use most of our health care resources and are most dependent on the system, which is people with special health care needs.

There is absolutely no data at the local level for the actual consumption by children with special health care needs, although we are hoping to fix that soon.

There is very limited data for adults. This is a really important, critical problem.

The information that is available, even at the health plan level, is often irrelevant or not actionable to the consumer.

Every time we measure quality, we come up with pretty much a similar conclusion, that the health system is operating at about 40 to 60 percent of optimal, no matter what the measure, whether it be a preventive care measure or a clinical guidelines based measure or an outcomes based measure, that there is a lot of room for improvement.

So, that is sort of the background where a lot of what I will say comes from.

There are four elements to a consumer-based data and quality and health care data collection strategy that FACCT has identified, three of which I think are very relevant to the decisions that are made by this committee.

The first is an awareness campaign that, just as we want to educate and make more aware providers and policy makers through the collection of this data, we really ought to seek to educate and make more aware consumers as well, about the role that they play in the health care system and the importance of being interested in and cooperative with the data collection efforts that are needed to make information available.

The second is meaningful truces. That is not something that I think this committee's work necessarily will speak to.

Third is useful information, again, relevant to their lives, and I will speak more about what we know about that in a minute.

The fourth is decision support. Somebody mentioned earlier about making data that is collected available to those who supply it.

Again, to the extent that consumers are, directly through surveys and other methods, the suppliers of information, they too ought to be a key target of receiving information back.

It would be a wonderful task to take on. It is not only making it available to researchers and policy makers and providers on line, but really allowing consumers access in a way that can engage them more fully in their health care, especially if data is available locally, but even national statistics are very compelling to consumers, if they are available to them in a way they can understand.

I was going to make a point that, in the work we have done with consumers, they are very discouraged that anything will really change in terms of getting actionable, relevant, timely information about their health and health care, without some sort of mandatory system.

Voluntarily, insurance companies and health care providers are not stepping up to the plate, necessarily. Employers are limited and, while the government hopefully can, there is concern that it can't be bold enough to collect the kinds of information and make it available in ways that are timely and relevant to consumers.

However, I think that this committee looks like a group of bold people. So, hopefully you can help with that.

So, what do we know? Should you want to use, as one of the filters over which you analyze what you come up with and asking the question of whether it is relevant to consumers, I can tell you about a framework that we have developed that is being used fairly widely nationally, and we worked on this with consumers directly.

Basically, it was trying to answer the question, what is it you want to know about your health and your health care when you make health care decisions, whether it is a decision about a health plan or a provider or a treatment decision.

Basically, there are five things. So, this is a framework that might be useful. First is the basics.

It is things like getting access to care, being treated like a human being, having an insurance system where you don't have to take out a part-time job to get your bills paid, things like that. So, that is the basics.

I think a lot of those variables are already collected in many data systems, although you could add some of the customer service pieces.

Staying healthy. How well does the health system help me stay healthy. Healthy behaviors, tobacco, alcohol, exercise, again, much of that data is already collected, at least from an outcomes point of view of health behaviors, but maybe not necessarily from what is the health system doing as a partner, helping people stay healthy.

Living with illness, help me live as well as possible, should I have an ongoing illness. This is, of course, the entire area of people with special health care needs and chronic disease.

Getting better. Should I get sick, how well does the health system help me get better. Again, we have hospitalization data, whether people are hospitalized, whether people use the system, but that is very different from whether, when they were hospitalized, the quality of care was good.

I think we are challenged to go way beyond existing data systems, and use data to look at hospitalization and clinical acute care in a much more consumer-centered way.

Finally, changing needs, which is, should I have a terminal illness or become ill in a way that is not going to be resolved and is very serious, how well does the health system help me with that, long term care and end of life.

So, those are the five major areas and this is really a three-dimensional framework. So, the categories, the basics, staying healthy, getting better, living with illness and changing needs, are one part of it.

The other strata is, for every life stage, to get this information for every life stage and for alternative units of analysis.

So, it is a three-dimensional framework. Then the cells that might be created, if you will, from that three-dimensional framework, we want to look at four major things.

We want to look at outcomes, health status, quality of life, experience of illness, care giver burden, things like that.

We want to look at processes of care, basic clinical guidelines-based care, and we want to look at experience of care.

That is not satisfaction. It is involvement in treatment decisions, all the things that we know are kind of the underbelly of what makes up good quality and good health care, patient education and counseling around alcohol use.

We have a lot of good data and research to show that certain things should be happening that aren't happening necessarily, and that we can measure that.

Much of this data can be measured from the consumer directly through surveys.

Then, the fourth is structural measures, which are not necessarily collected through survey-based data, but come in another way.

I guess the fifth dimension, really, is all the analytic variables that you want to make sure you collect, so that you can understand some of the variations according to social determinants, demographic data, and so on and so forth.

Some of the principles that FACCT has used to try to swing our way through all the possible measures that could fill in this three-dimensional matrix that I just told you about, outside of making sure that the measures themselves are feasible and scientifically sound is the first pass.

Given that you have a group of measures that are both relevant, sound and feasible to collect, then what do we do next.

So, these are some of our criteria that we have used, and I can give you a lot more data on how these play out.

The first is sustainability. Our belief is that, if you focus on the health of people in selecting information elements, that you will have a sustainable data set that will always be relevant.

To base the selection, should priorities need to be made, on enduring consumer relevant information that is adaptable to anticipated changes in the health system as far forward as you can look.

Flexibility, which is a little bit different from the way you are defining it, although the way you are defining it also fits into this.

First of all, we think it is important to select measures and methods that allow for potentially alternative administration modes, simply because much of the data that will be collected, for example, in national surveys will also be collected locally.

To the extent possible, when choices have to be made, look at methodologies that, across modes, sort of telephone, in person, on line, mail data collection. I am speaking mostly now about survey-based data collection, obviously.

Then finally, the data elements that you collect are embedded within a larger framework and can be used in multiple ways to create different pictures of performance and different pictures of health and different pictures of health disparities.

I have a lot of really good examples if you like. We have measured, through our recent Robert Wood Johnson National Strategic Indicators project, 314 health indicators that cut across this framework.

We roll those up into each of the five categories by population group and unit of analysis.

So, basically, with seven surveys, we are able to get a lot of information and it can create either a living with illness sort of score, if you will, guidelines, evidence-based compliance guidelines.

Scored data elements can be used for that, or they can be used just to create a picture of how the health system is doing for people with diabetes or people who are African American or what have you.

So, there is a way in which this framework can be used, potentially, to allow it to be very flexible.

Acceptability is one of the most difficult. I think Dr. Newacheck knows of a process we have been going through, to try to balance the needs of policy makers, providers and consumers in the selection of data collection methods.

Given the cost of data collection, the trade offs are often very real. I guess my main line would have to be make sure the consumer is up on the list in what you select or what you put priority on for selecting, that the information is acceptable and relevant to them.

Minimize black box methodologies. That is something that we have found is very important. We have come up with all kinds of weighting schemes and data smoothing and things like that.

I think ultimately, for certain uses, it is unavoidable, but if we are going to make the information that is collected through any national system relevant to consumers, there has to be at least not too many steps between the raw data and what they actually see, or at least that can be explained in a way with a nice little tree diagram or something.

Interpretability, I think, is really a function of making sure that the framework that is used, what data elements and how they get integrated, have some kind of internally consistency conceptually.

This really is about having a larger framework into which you can explain where the priorities are coming from, and also to support communication efforts.

To do this kind of work without having explicit some sort of back end or front end data collection and communication effort would be really a failure, I think, to not support making sure that the audiences, both the suppliers of data and users of data, really would take into account our human limitations in using information and try to communicate in the communications realm, which I think is a huge opportunity, with this new initiative.

Finally, making sure the information is actionable and discriminating. For us, that has mainly been choosing quality measures, health information where we know there is a significant opportunity for improvement, high disparities by population groups, things like that.

So, those are five basic principles that I could elaborate on much more extensively, but I just want to leave you with that.

I want to close by sharing with you a little bit more about an approach to data collection that I think is at least worth considering.

It speaks to the issue of private public sector collaboration, and I was asked to speak to that topic in particular.

FACCT has been engaged, for the last couple of years, in experimenting with intranet and internet or online based data collection and whether or not that is a viable strategy for both engaging consumers at the grass roots level and also collecting the data that could be needed to assess the health care system, the health of the public, the quality of the health care system, and compare different systems or different counties. Really, it can be cut any way.

The first was a project that I mentioned to you with the Robert Wood Johnson Foundation, where we were asked to create a profile of performance of the health care system, a profile of both the health of the public as well as the quality of the health care system.

We used our framework and in basically nine months we went from survey design to data collection for about one-twentieth of the cost that it would cost to do it in another way, and the data is useful and we are doing a lot of methods and validity checks and things like that.

There are ways to collect data through this methodology that I think you should consider. The feasibility is there, the cost is, again, one-twentieth or less than what it costs otherwise, and there are viable sampling strategies that can be considered, especially if you do this in partnership with the public sector and consumer organizations.

So, that is a broad approach that we would consider, that we would encourage be considered either as a data collection strategy that could be supported or, maybe more likely, just to make sure that, whatever is being done nationally, there is a collaboration with private sector efforts like this.

Then, when we come out with profiles of performance of the health system, either through the IOM committee on a national quality report, or the national forum, or HEDIS or other entities, then there is some consistency.

There are some good examples of that. Most recently we have worked on a screener for identifying children with special health care needs.

That is a tool that will be in HEDIS for health plan performance assessment as well as MEPS as well as SLATES.

We are going to be working on the National Health Interview Survey and see what we can do.

That is an example of something that creates a very powerful opportunity between getting consumers information that they need, and making sure that we have the information all the way up to the policy level.

The other method of using the internet is really more of a grass roots effort, where we have taken all the data collection survey tools that fit into that framework I described to you, and make it available to consumers through an internet site called Compare Your Care.

This is a not-for-profit effort by FACCT, by the way. So, this is not some effort on our part to get rich. It is really just to make available, in a sort of NPR-for-the-web-type way, an opportunity for consumers to come on line, check out the quality of their care by filling out standardized surveys, getting information back immediately about how well their care is compared to bench marks.

Coach them on how to improve their care with printouts that they can use to improve their care at the point of service.

Then they are aided, eventually when we collect enough data, to be able to help them compare performance among systems, although that is down the line.

We are working right now with unions and companies, mostly, and in the coming year, hopefully with several Medicaid plans, to test out the feasibility in Medicaid and for the public sector.

What would the criteria have to be to make some kind of online data collection which is very compelling to many consumers, even at a very low income level.

We found, the studies are showing that there is more and more access in those populations to the internet. We can have just in time data collection.

So, rather than wait for the lab, between the time you get the National Health Interview Survey and the time the report comes out, you can do just in time data collection, perhaps as a complement to your other efforts and as a way to monitor, on a more real-time basis, how health care is going in America.

If there is some way that that could become palatable to a national system, I think that it would be a wonderful complement to consider, also as a public private sector partnership.

Those are some of the comments. Whatever you do, we hope that it will somehow support the ultimate goal of educating and engaging consumers who are really at the forefront of really needing health care.

I always say that 90 percent of health care quality measures are about how well the health system helps people do what they need to do for themselves, whether it is chronic disease management or preventive care. So, it is very important to include them as one of the key audiences.

We would be happy to give lots of other technical comments on many other dimensions of your report, but I wanted to focus on the consumer piece, because I believe that is my role.

DR. FRIEDMAN: Thank you, Dr. Bethell. If you haven't, and if you could, provide us with a copy of your remarks or your slides, that would be extremely helpful, as well as any other comments that you might have on the report.

DR. BETHELL: Absolutely.

DR. FRIEDMAN: Kathy McCaffrey?

MS. MC CAFFREY: Hi. My name is Kathy McCaffrey. I am the vice president for health care data and operations for the California Association of Health Plans.

In that role, I have, over the last couple of weeks, since being requested to make a presentation here, thought a lot about what the role of health plans is in the national collection of data.

I realize that I am in kind of a unique position to be able to speak on this issue, because I have actually silos in my head about this, because of my background.

I started out in medical records and was the director of medical records at the University of California San Francisco for a number of years.

I got involved in a lot of the projects around electronic data collection with an eye toward an electronic medical record.

We were way ahead of ourselves and, I am sad to say, I don't think we are so far ahead at this juncture. So, I have that silo.

Then I went on to work for government and worked at the Office of Statewide Health Planning and Development, where I worked on and managed nine health care data bases for the state.

So, I looked at it from a policy level. So, I got involved in the grunt work, working with patients and doctors at the medical record level and then with the government.

Now I am working on the business side with the health plans. As I said to Mike Rodrian, who I worked with when I was working with the state, I finally can spell HMO. So, I have a better sense of what the business piece of health care is about, after working with them for three years.

My fourth silo is, of course, as a consumer, and recently having to deal with some very severe and significant illnesses of both family and friends, both on the mental health side and the physical side.

I think that all of us have all those dimensions, but I had a hard time trying to get myself focused, because I got so excited about what Dr. Middleton said and all these other things, and all my sectors starting getting interspersed.

What I wanted to say is, thank you very much for coming to California. I was involved the last time NCVHS came to California during the HIPAA hearings.

They weren't really willing to come to California and I had an opportunity to invite and be involved with that hearing, and I am really glad to see that you have come.

We in California, of course, act like the nation of California and we don't go east very often.

One of my jobs for CAHP has been working on a collaborate data initiative called Cal Links. It was conceived in California at the same time, literally, simultaneous to President Clinton signing the HIPAA legislation.

We didn't really, people didn't really know about HIPAA. I did because I was working at the state at the time, but it is a really important area where we started to really try to pull all those stakeholders together.

As such, what we have uncovered is the difficulties that we are going to face in the real implementation side.

We had thought, we can get this done. California is going to be sharing information electronically in a year and a half.

We were very sure, because we had all the stakeholders at the table, unlike the initiatives in Washington State with CHETA and some of the other things in Massachusetts and Minnesota.

We really felt like we had everybody at the table and everybody was really enthusiastic and we were going to get someplace.

We have gotten someplace, but we haven't gotten it quite implemented yet. I wanted to be able to share with you, really, on the operational side, what are some of those difficulties we face, and how, in my view, the health plans can be involved with this, which I don't think the health plans have been much involved.

I think it was Peter this morning, Peter Juhn, who said that health plans were somewhat missing here and insurers.

I am hoping to be able to identify maybe why and how we can help that.

First of all, I think what we have to realize is that the data bases for health plans is what I call secondary or tertiary or beyond that.

They are a data base that doesn't happen very close to where the patients are getting care and where the providers are. It is pretty far away.

Health plans, of course, I see this as being kind of in the middle. You have got your employers out here, you have got your health plans, and you have got your providers and the patients.

Oftentimes they collect -- well, health plans collect an awful lot of data, but it has been for various reasons.

When people want to have access to it, health plans have been pretty reluctant to provide that because it is proprietary, they are very concerned about privacy issues, there are a lot of other political issues around that.

One of the things I learned about health plans is that their legacy systems vary really wildly across from one to another.

That is as opposed to hospitals where I came from where things are pretty straightforward. Everyone has a master patient index. Everybody has certain things.

Although they are a little bit different you know you can get to certain information when you go into a hospital.

That is not the case in health plans as much. Why that is, I really learned a lot about the fact that it depends on where these health plans came from.

If they came from indemnity insurance, they had a whole different set of customers they were dealing with in that environment.

If they were a fiscal intermediary to government programs, that was a whole set of different parameters. The origination during -- if they originated during the managed care era, they set things up very differently.

Then we have got the model like Kaiser where the health care delivery is combined with the coverage. So, all these models, when you start looking at their legacy systems, they just don't look like. So, communication, even amongst them, is very different.

I have seen examples I wanted to give you that really talk about the practical issues that we face in the health plans.

One of the projects we worked on in Cal Links was eligibility data. We also looked at patient identifiers because of the project that Mike Rodrian alluded to earlier, the patient identifier project in California.

I started asking health plans, how do you identify your patients. What I found out is, they have a subscriber identifier.

Well, that comes from indemnity. You have the subscriber. That is who you contract with. If they have a family and if that employer covers that plan, then there are a lot of other people.

It is basically the person who is employed who is the key person. Therefore, there is an identifier that is just the subscriber.

In fact, the identification cards, which is another project that we worked on in Cal Links, has the subscriber's name on it. It doesn't have the wife, the children, individually.

Their systems are set up, keyed off just this subscriber number, not a number number like in Kaiser, for example.

Kaiser has a unique number. It is their medical record number. It is all of these unique things.

One of the things that had happened probably in the mid-1990s was, one of the health plans had caught onto a real national move. They had a lot of government-paid patients.

They were thinking that it would be a good thing to consider what it would be like to change their numbering scheme of their enrollees to go with the Social Security number.

This was before all the discussions about Social Security number and they wanted to see what it was like. They actually had a goal that they were presenting to their board of directors, that in a certain time frame they were going to make a change.

They went through all the incredible -- I mean, they explained to me they went through an incredible amount of research and assessment and did all the work to get this thing ready to go.

Just before they were about to present it to their board of directors, they looked at it and said, what is the value for making this change.

They couldn't find one and they didn't go forward with it. Here they were thinking they were going to be on the band wagon to be more toward the standard. Of course, we know what has happened with the patient identifier, with the hold up on the privacy issues and the complexity of that.

It is not simple. Some people had thought that Social Security number would be the thing that we would want to use and it is not true.

Eligibility, one of the things that I had an experience with in terms of trying to link -- we were trying to capture some information or provide information about eligibility.

What we have uncovered is that products are very different. The health plans all have different product lines.

It is very proprietary, how they cover, what they cover, what kind of co-pays, what kind of deductibles, you know, how it relates to their provider networks.

There are so many variables in that, it is very difficult to put your arm around it in any kind of standard way.

It can be argued, it is not a good thing to standardize. This is what you want, is to have them have a lot of different opportunities to create a lot of new products, et cetera.

It creates some difficulty, again, in trying to understand what eligibility is, and it ends up being not standard.

Data quality. Another issue that I learned about, one of the things in hospitals, we are always talking about the data quality.

There was a real disconnect with the physicians in the hospital environment between what was collected for a medical record data base -- they respected it, they liked it, they believed it and they used it -- versus the billing data base, which they didn't care about and didn't pay any attention to.

There was this incredible disconnect. What we have seen is that, in the hospitals, that stuff has come closer and closer together.

In the health plan arena, they had never even paid any attention to the clinical data that was coming in. So, one of the CIOs of one of the health plans told me that what happened, from his perspective, was about five years ago, they started realizing they had responsibility for clinical kinds of information, which really is the codes on the claims and encounter forms.

He said, before it would just be something they would throw into a file. It would come in in big chunks, they would sit it in a file, they never looked at it.

Now, what they are having to do is to screen this stuff and do validity checks and accuracy checks and everything and they have really stepped to the plate to do that.

It is variable, but it is something that they have recognized as an important piece of their responsibility in this whole data collection piece.

I had the opportunity recently to talk to someone about communicable disease and what is the health plan's role in communicable disease reporting.

Right now there is no role. I thought, you know, if I could conjure up in my head what possibilities could be used with these very large, robust data bases, it might be some research kinds of things where one would be able to identify maybe potential communicable disease problems that are at least in the health plan's data base, to see, maybe not at an individual level, but to be able to see in an area what kind of reporting does that match.

Are we getting good reporting of communicable disease. I don't know, and I really haven't talked to any of the medical directors about whether that is a possibility.

In terms of just thinking about it in the context of this question, what is the role of the health plans, that might be something where we could look at some comparative information.

The other thing we are working on at CAHP is on the mental health parity bill that was passed last year in California and trying to define that.

What we have uncovered is that there has been no communication. I still can't believe this, but the psychiatrists are all telling me that this is the case.

There has not been communication between the health plans -- they played a very, very small role in the past, but the state, local and private entities have never come together to really talk about where the coverages compare and who is responsible for what.

Then you bring in the whole issue of the schools and money that is allocated there. It is a very complex issue that the health plans really want to get their arms around.

They want to get their arms around it, for one reason, because there is a bill that says they are required to do mental health parity. What does that mean has become a very big issue for them.

In summary, I would like to just say, from a background standpoint, I think that the health plans have an interest in health information and an infrastructure.

I think that is where the private public connection might be, but to date, I don't see it as having been a very big role.

Having heard my colleagues from the government and having worked in that arena before, I really do feel that there are some opportunities that maybe have gone untapped.

So, here are some considerations. One of the things that I am concerned about is using the word standard and conveying to people what that means.

When I worked at the office of statewide health planning and development, I had managers come up to me who were maintaining certain of the individual data bases and say, well, I think that this data element ought to be this.

I would say, but that is different from what we have said in this data base. Standard means the same and we have to keep going over and over that, because that is really important.

People don't understand, when it gets down to applying something it is like oh, yes, that is fine, oh, I agree with the standard, but for me, I am going to do it this way. So, it is an important thing.

That is why I think HIPAA is so important, and it has been the government's role, I think. I think that is the role the government has played and it is a good role and I think the health plans are really embracing that.

You can see that, in California, the health plans embraced that through Cal Links a long time ago. Trying to get it implemented, however, and realizing the cost of what it meant has become a significant issue.

Along those lines, CAHP has initiated, with all of their health plans, kind of a statewide effort to try to address implementation issues and try to work together rather than duplicating all these little projects that we can see. So, we are trying to not duplicate.

Some of the other issues that I wanted to share, but I think I am going on too long, so I am not going to get into it much, but the one that I would like to focus on is the cost, the thing that I have identified as problems to access to information.

The cost, the issues that I see have to do with data extraction. The legacy systems that the health plans have are pretty complex and the data extraction ends up being pretty costly.

The other piece that I wanted to say is that some of the -- we tried to deal with an area around immunization.

Immunization is very important to the health plans. They themselves wanted me to coordinate a project around doing immunization data collection, just for the health plans.

When we started working on it, we realized that it was such an enormous cost and such a big huge effort. I appreciate the need to look at registries as a very important area because you can really home in.

I managed a cancer registry at UCSF. We had eight people in that registry. I mean, that is a huge cost to look deeply into particular disease entity.

We started looking at that from the health plan side on the immunizations because they have to monitor that for HEDIS measures.

Again, what we found out is, we didn't have any infrastructure from which to get the information from the doctor's office to the health plan. That is where it was really needed.

One of the docs who sits on one of my committees who also is a practicing doc said to me, Kathy, if we can get the data around immunization to be on the same document that is reported like to the claims, if we could get it on the claims, just so that we know what is going on, then it is a vehicle that doesn't have to have, okay, here is another form, here is another form, here is another form, and have to be processed separately.

Those are some of the things that I think the health plans really want to be involved in this, but it is really hard for me to pinpoint exactly how best we can do that.

Some of the ideas that I kind of -- I did my own little brainstorm. I did a little brainstorming with a couple of the physicians that serve on the medical affairs committee at CAHP.

Again, what I refer to as conducting some research, using some of their data to see if there is -- they have a robust, broad data base that includes the private sector primarily, not all, but the private sector.

Maybe we can look at things where it can lead to validation of the collection mechanisms that we are using in the public sector.

I am not sure what that is going to look like, but the whole idea of communicable disease reporting through the internet just brought that up to my mind, as something that might be a possibility.

I think that the committee needs to involve the accreditation organizations like NCQA.

It turned out there was a conversation we had with the mental health people the other day where the HEDIS measure is completely differently defined than what we were trying to collect and trying to define at the state level, through some of the covered entities, both at the state and the federal.

We have got some difficulties, again, in definitions. So, I think that by involving the accreditation organizations for the health plans, that would be really helpful.

I think to coordinate collection with the health plans, we need to engage the health plans, especially when they are governmental projects, in some of the governmental areas, in the CHIP projects and in Medicaid and in Medicare.

That is another place where, again, standardization is going to make it easier for them as well.

Using HIPAA, I think, as a standardization tool, not just for this transaction phase, and the bigger piece is the privacy and the security, but using that as the vehicle going forward, for the other projects we are looking at, maybe for registries, et cetera.

Definitely involve health plan leadership. The issues that I think I have found, or the people I have found very helpful within the health plans have been their legal counsels, who are really concerned about confidentiality, and are very helpful in trying to figure out ways of using data in a smart way and can give us some advice in terms of being able to use that rich data base.

I think my final comment is just to say that one of the things I have learned about administrative simplification is that it is complex.

I am going to leave it like that. That is really what I see. The more we talk about simplification, the more we did into the details, it is very complicated, because we haven't standardized, for all the reasons the previous speakers have mentioned.

I do think that the health plans can be a resource, even though it is not their primary role to do public data collection. Thank you.

DR. FRIEDMAN: Thank you, Ms. McCaffrey. I am very jealous of the presenters' time. We are running a little bit late and we are lucky to have Dr. Jonathan Fielding here, formerly of the Massachusetts Department of Public Health, many, many years formerly of UCLA and now of Los Angeles County.

He is going to need to leave shortly. What we are going to do is move right into Dr. Fielding's presentation, then take a short break, and then conclude with our three final presentations.

I realize that some of you may have to leave. I think we are going to have to leave the questions until after the last panel, unfortunately. I am sure that some of the presenters are going to have to leave.

DR. FIELDING: Thank you very much. It is great to be among so many friends, and I appreciate the opportunity to talk perhaps slightly out of order.

I really want to commend you on the work that you have done. This shaping a vision for the 21st Century health statistics is really very important work and, I think, very productive work.

I think it also highlights the tremendous challenges involved in developing a truly integrated and comprehensive system of population health statistics at all levels of government and below. I want to get to that in a minute.

Now, Los Angeles Department of Health Services is the second largest local health jurisdiction in the country, and we have worked very hard to try to improve population health data at the county level, but the county level is 10 million people.

Also, at the level of the service planning area, that is still more than a million people. At the community level, we still have a lot more progress to be made.

I think it is really essential that we get data at the subpopulation level, defined not only geographically but by race and ethnicity, by social class, even though it is not in fashion to discuss it, by gender, by age group, and also by sexual orientation.

I fully support the principles and the major themes laid out in your report, in particular the importance of a very broad definition of health, perhaps not as exhaustively comprehensive as WHO, but broad nonetheless.

A flexible system to address emerging and changing health needs, adequate measures to ensure the confidentiality of data being collected, collaboration at all levels of government and, particularly, collaboration with the private sector, about which some has been said but I think never enough.

Then, collection of data that has practical utility in informing both programmatic decisions and policy decisions. Otherwise, we have a lot of data and very, very little information.

Just to give you some idea about Los Angeles and our challenges, we have over 4,000 square miles, 10 million people and no majority population.

We are about 45 percent Latino, 33 or 34 percent white, 13 percent Asian Pacific Islander, nine percent African American.

We have more than 50 countries and regions of the world that are represented each by more than 5,000 county residents. In many cases, it is the largest aggregation of people from you name it anywhere in the world outside their home native borders.

We also have the largest urban Native American population in the country, and we have a tremendous diversity between rich and poor.

On an average day, we have 85,000 homeless and, unfortunately, many of these are children. We have an estimated 300,000 men and women who are gay, lesbian or bisexual, and also a significant transgender population.

So, we have made some important investments. We have established an office of health assessment and epidemiology very ably run by Dr. Paul Simon.

In addition to collecting all the vital statistics and communicable disease data, we have started a biannual random digit dial survey called the Los Angeles County health survey.

That has allowed us to much better track health behaviors, chronic non-infectious diseases and access and utilization of care.

Despite this, there are a number of challenges, and I want to just make some recitation of them and some suggestions.

I guess the most important thing I can say is that I think it is critical that, when we think about health, we think about the multiple determinants of health.

I was glad to see the Evan Stoddard model in the materials that were distributed, but I am not sure that our collection system fully reflects the broad range of determinants that that suggests.

I think we have to give a lot more attention to that. We don't import housing data, for example, very often in our health statistics, and we don't have population transportation data. That is not viewed as health data.

We don't have data on climate as another example or even on things that have been very clearly related to health, not even in subtle ways, but in terms of mortality risk; that is, social connectedness.

We have very little data on many of these critical determinants. It is always surprising to me that, when we talk about health data, that we don't have these as part of our broad definition.

Then the physical environment, in California there was a big concern about chromium 6 in the water. We have real problems with small particles in air associated with substantial increases in respiratory related mortality in Los Angeles County and elsewhere, with significant geographical gradients.

I think we need to think about that. The other major point I want to make is, we can't just look cross sectionally. If we are concerned about health data, we have to think much more longitudinally.

If you look at the work of Barker and Gabarino and a bunch of other people, I mean, we are learning now increasingly that prenatal influences have impacts much later in life, not just in childhood, not just in birth outcomes, not just in what happens in childhood, but in adulthood.

The recent study, for example, showing that small birth weight was associated with increased incidence of hypertension in adulthood, I mean, we have to start looking longitudinally.

We can't just take snapshots and assume that we are going to have a picture. I think we have to look not only at current health.

We have to say, what do we think relates to future health. We have to have many more paired data sets and many more longitudinal surveys that take full account of the multiple exposures, starting with the prebirth experiences and then going forward. I do not think that we are doing nearly enough of this.

The next point I make is, if we are going to be effective and really empower people through health statistics, we have to do it at the very local level.

We have to do it at the level of neighborhood and community, where people have social interactions, where people plan, where people make local decisions.

In Los Angeles, for example, we have 88 cities in Los Angeles County. In most cases, we have almost no health data at the level of the cities. Certainly our confidence intervals are as big as all outdoors.

Now, we have vital statistics but, other than that, we have very, very little. I think it is just critical that we get data down to that level.

We are trying to engage people in health issues and in making decisions about what goes on. If we can't get data that isn't two orders of magnitude higher in terms of aggregation, we are just not going to get there.

We need more thought. How does one very efficiently and inexpensively get data at that level. Now, maybe the internet will allow us to do that and it may be that there are some other techniques or some rapid epidemiologic assessment techniques that have been utilized using students, for example

I think there are ways to overcome some of the sampling problems, but we have to think a lot more about how we can get data at that level, and get it in a way that allows us not only to get cross sectional data but then get important trend data.

What everybody wants to know is, are we moving the needle. We want to change X,Y and Z, not just what it is at this point in time. Have we made some difference.

You know, we spent 5,000 volunteer hours to try to do X or Y. Have we made any change.

I think the internet can be a godsend. We have to find ways, despite the current digital divide. Almost everybody in the next 10 years is going to be using the internet on a regular basis.

We have to find ways that people can easily get not only data and not only translate the data into information, but manipulate the data, you know, by English language query systems on the net.

I don't think that that is impossible, although the challenges are very large.

I also think we need much more thought to the issue of data warehouses. How do we get data from multiple sources, for example, the determinants of health, and put them together in ways that allow you to mix them.

Often it is very challenge. Some has it by census code, some by zip code, some by street address. Just the geocoding issues alone are daunting. Those can be overcome.

I also think we need to think about measures of culture. We don't really pay much attention to that, practices, beliefs, attitudes.

Now, changing gears for just a minute, we don't have enough on the uses -- this is mentioned in your report -- of alternative medicine.

We talk about health care. That is one type of health care. There are a lot of types of health care and we need much more on that.

Our data base, certainly, on efficacy is growing, but we are not keeping pace with that by the kind of statistics we are collecting.

Then I also think it would be helpful to collect more information on the burden of illness. We did the first municipal study of disability-adjusted life years, and it has many limitations in terms of methodologies.

I think it was very important, because it gave a very different picture of health at the level of our communities than simply looking at mortality or some of the other ways.

I think finding better ways to measure that, and to measure not only quality adjusted life years but somehow health adjusted life years would be critical.

Just a few final remarks. I want to really underscore what I have heard others talk about, the need for federal leadership in developing standard definitions for key measures.

For example, geographic designation, racial, ethnic categories and measures of health status and health behavior and functional status, all of that.

I want to point out a very good level of collaboration that is going on. We are going to have the California Health Interview Survey. I don't know if Rick or somebody has already talked about that.

We are collaborating with that. I think that is going to be extremely helpful and will allow us to compare ourselves to other counties.

I also point out that it is not going to answer all our questions. We are still going to keep doing our Los Angeles survey because there are a lot of things that we want to ask that won't be part of that standard instrument.

Then two final comments. One, we need to find ways to provide better assistance to local jurisdictions.

My department is very blessed with resources. I mean, we have 100-some-odd epidemiologists and demographers, and we have got people who can look at stuff and try to understand it.

Most local health departments don't have a clue. I shouldn't say they don't have a clue. They don't have the capacity to do the sophisticated analysis that, in many cases, they would like to do.

Some health departments are one person. Even if you take a small health department -- there are places in California that have very limited resources to do this.

There is a need to find efficient ways of providing technical assistance.

My final comment is, we have a problem in terms of response rates on telephonic surveys. There is so much telemarketing going on, there are so many people who don't want their privacy invaded.

There is now the ability to identify the telephone number of anybody who is calling, and we are having one heck of a time.

We are in the high 50s in our Los Angeles health survey, and that is with, you know, exhaustive follow up bordering on pestering and using seven or eight languages and it is the auspices of the health department and others, and we are still having trouble.

Now I am hoping it is a representative sample and what we find comports with BRFS and other data, so it gives me some confidence.

That is the problem. I don't know how we are going to solve it. We need to think about doing that together. Otherwise we are going to have 10 percent of the population and we are going to say, we think this is reliable and valid data, and we may be kidding ourselves.

Thank you very much for your indulgence. I would be happy to answer any questions.

DR. FRIEDMAN: Why don't we take a break until 3:30. Then we can resume with the next panel and then we can have questions for any panelists who can stay.

[Brief recess.]

DR. FRIEDMAN: We appreciate people staying and we appreciate this panel that is going to be devoted to both the national health information infrastructure as well as the health statistics vision interim reports, and focusing on cross cutting issues relating to both.

Why don't we start with Rita Moya from the National Health Foundation and thank you for spending the day here very patiently.

Agenda Item: Combined Panel.

MS. MOYA: I am very pleased to have the opportunity to share the challenges and the experiences of an organization that is, first and foremost, an end user of health statistics and data.

The National Health Foundation is a charitable organization with a 27-year history of attempting to improve the effectiveness and efficiency of health care and, most recently, the health of populations with limited access to care or access to health information.

NHF's mission is carried out through projects such as outreach for low income pregnant women that connects them with free or affordable prenatal care.

We have been involved in numerous health education projects designed with a sensitivity and attention to diverse and culturally languaged populations.

We have been battered and bruised in attempts to create community health information networks and greater sharing of non-identifiable health data among all shareholders.

NHF was involved in outreach to uninsured families, to build linkages to public and private health coverage options for uninsured children before the federal CHIP program was developed, and we continue to be very involved in that work today.

Our major focus in the last several years has been creation of web accessible tools to enhance health-related decision making for organizations like ourselves, that work with uninsured and underserved populations.

I will share several of the challenges we have faced and lessons we are learning in our efforts. I will also attempt to relate our experiences in the field to the vision and policy directives the national and committee work groups are developing.

Most of what the work groups have proposed has been inspirational and has affirmed the direction and purpose with which NHF has naively approached many of the difficult data sharing and health information technology projects that we have been involved in since 1992.

I could spend my allotted time referencing sections of the proposals which are totally consistent with NHF's field experience and research.

However, what I believe would be more useful is to highlight several examples of our attempts to implement the public private collaborations that are proposed throughout the reports, and also those areas where we have disagreement with the proposals.

We would generally evaluate the work groups' efforts as underestimating and understating the importance and difficulty of creating the degree of public/private collaboration that is essential to realizing the goals of the NHII, and the process for creating the vision for the 21st Century Health Statistics.

NHF has spent eight years and approximately $3 million in attempts to utilize information technology tools more effectively to enhance health.

From our attempts in the early 1990s to create a health information network for all California providers, health plans and employers, we learned that the challenges were not about the availability of technology, but rather, about who would benefit and who would pay.

The work group proposals have done an excellent job of outlining who benefits, but have left unanswered the question of who pays.

For the work group's proposals to have impact and serve as policy frameworks, much more needs to be said concerning which entities have primary responsibilities for providing resources.

How costs can be fairly distributed can be the most important aspect of the reports, and having a full and rich discussion around the resource issues might provide the breakthrough that we all hope will occur in the next several years.

The term public private partnership is often substituted when a viable business model is not available, and who picks up the bill is uncertain.

Because NHF has to raise funds from private philanthropic sources to gain the support of public entities, and rely on in-kind contributions of commercial technology products and services, we have been forced to develop business models for our pilot projects, that deal directly with resourcing issues.

Some of these business models have survived and others haven't. A model that has often been proposed but rarely works is one that NHF has attempted several times.

It involves bringing all the organizations that would benefit from a common administrative data transfer system together, designing an ideal system, and then looking around the table at providers, health plans, employers and government entities and determining the one class of participation that has the greater resources, that should capitalize the effort.

From our experience in this situation, usually providers and employers and, to some extent, government has looked to health plans to finance their efforts.

In 1993 and 1994, we made good progress with this model, and health plans in California did contribute significant funds to create a shared electronic data interchange.

When it came time to capitalize the necessary provider technology, then the collaboration broke down, because the providers were unwilling to invest in the systems or services that they perceived created greater value for their trading partners.

Subsequent efforts that have followed under the leadership of employers and health plans have had similar experiences.

The investments required by providers and their unwillingness to finance the purchase of technologies and services that they believe have limited return continue to be a barrier.

When I recommend that the fair distribution of costs must be addressed in the work group's proposals, I am focusing on return on investment issues that need to be clearly presented and analyzed.

There are references to the need to enhance the quality of health services and to turn the tide on the prevalence of medical errors, which the Institute of Medicine cites as the fifth leading cause of disease in the country.

As consumers, we all benefit from greater investment in health information systems, that can detect potential errors related to drug interactions and assure diagnostic accuracy.

Should that mean those purchasing health benefits should be willing to help finance investments in improved information systems and decision support?

For most Americans, the purchaser of benefits or care is not the consumer, but rather, the employer or the government.

This situation makes the return on investment much more difficult to calculate, because it is indirect, in most cases.

I would propose we find new ways to calculate return on investment that takes into account enhanced quality of health care and improved health status.

This type of calculation would have broad impact and use metrics related to community health status.

The model I propose would have returns distributed to all the various stakeholders and those such as the uninsured and underserved, that could not support an investment, would be the responsibility of government and philanthropy.

Health plans, employers, providers of products and services, including pharmaceutical companies, would all be given a distributed portion of the investment and the return.

We believe the issues related to return on investment in health information technology will become more high profile and more contentious in the next months and years, as the health insurance portability and accountability act of 1996 is implemented.

I am a consumer representative on the WETI board of directors. This legislation specified official comment was to provided by the WETI organization.

After months of deliberating the regulations that have been published to date, WETI has found itself in the middle of an even bigger debate concerning return on investments related to HIPAA.

The same questions regarding who will benefit and who will pay are surfacing, and the debate may lead health plans and providers to work very hard to delaying or even blocking the implementation of HIPAA.

If this were to occur, we would see it as a major set back for consumers in progress toward the national health information infrastructure.

I urge you to get involved in this specific issue and determine how the consumer view can be represented in this coming debate.

In mentioning HIPAA, I must also mention a provision of that legislation that is still awaiting the issuance of regulations because Congress failed to act on the privacy and confidentiality of personal health information provisions.

In order for HIPAA to contribute significantly to the vision of the NHII, we need a vigorous public debate on the issues related to privacy.

Had Congress acted in the time frame that was specified, that debate could have occurred over the last several years.

We believe that debate is just now beginning, as the public begins to understand the risks and rewards associated with having personal health information available in formats that can be electronically transferred and shared.

Too often, the information that is being published by the media is related to the risk side of the equation. The horror stories that result when confidentiality of personal health information is breached make for lively 60 Minutes type exposes.

How much of a real threat are such breaches and how much benefit is derived when no breaches occur?

How many lives can be saved each year if care givers have access to more complete medical histories and more comprehensive records of tests and prescriptions?

NHF believes that the balanced public debate regarding the risk and the rewards of exchanging personal health information in a commonly understood manner among trusted entities needs much more visibility.

That is why we are collaborating with consumer groups, practitioners, educators, payers, policy makers and philanthropies in the Vallejo initiative.

This multi-year effort has been undertaken to provide all individuals in communities access to information, services and resources necessary to achieve optimal health.

We are passionately committed to creating an epidemic of health that can spread rapidly to every part of this country and beyond.

A key activity of Vallejo is defining the means for individuals, families, the communities and the people who serve them to be able to exchange health information in a commonly understood manner trusted by all.

This is an extremely ambitious effort, but with the continued support and involvement of organizations such as the Veterans Administration, academic medical centers, Department of Defense, providers, private foundations and consumers from all circumstances, Vallejo hopes to lead many conversations regarding the risks and rewards of sharing personal health information.

We would invite your involvement and participation in this effort as it relates to the furtherance of the NHII.

A key challenge is finding ways to resolve the critical issues among competing health information priorities, particularly in situations where privacy of personal health information must be balanced against public health objectives.

These issues have been framed in very straightforward language by Ezioni in his recent book, Limits of Privacy, which I would recommend as required reading for all of us interested in finding balance among these competing objectives.

I would like to close by sharing with you some examples of the work of the National Health Foundation and our partner organizations in creating the public private collaborations that are referenced throughout the work group's proposals.

NHF has recent experience in developing web based health planning and decision support tools, designed to integrate applications for individuals, health care providers and community health professionals.

The tools are being developed at a common site that has been branded as Health Query.

This is a collaborative effort undertaken to integrate commercial software and public and private data bases, to create public domain applications.

NHF's partners include the California Department of Health Services Center for Health Statistics, which is a large public entity that Mike told you about in his remarks.

The state center is contributing software, data and expertise to the effort.

ESRI, a commercial organization that is the world's largest supplier of geographic information systems, GIS software, is contributing software and also systems integration services.

Our commercial contributors also include Sun Microsystems and Oracle, which have provided hardware and software products to Health Query.

The development funds that support NHF's coordination and project management have been provided by the Good Hope Medical Foundation, a Los Angeles based private foundation.

The rationale that was used to solicit philanthropic support to the effort was the need to develop tools that would address health planning disparities.

Health Query addresses these disparities by creating access to free decision support tools that would not have been developed by commercial entities because the market is too small and fragmented and they require a greater degree of geographic customization.

The commercial contributors to Health Query are involved as a means of addressing the needs of organizations that serve the uninsured and underserved populations on the have not side of the digital divide.

The State of California is involved because of its clear focus on making data available and useful to as many end users as possible, in a format that is easy to understand.

Health Query is currently being developed and piloted in Los Angeles with a very large end user group that includes over 250 public health officials, health planners, community based organizations, community clinics, provider organizations and academic researchers, some of whom you have heard from today.

Health Query has a close alignment with the categories of users identified in the work group's proposals.

Health Query also has a key feature, the availability of data analysis at the geographic unit that end users find most useful.

You will not be surprised that that geographic unit is the zip code level.

Health query has also tried to address the need for geographic breakdowns of data by racial ethnic subpopulations.

This is challenging at the zip code level, but we have combined public and private data sources in providing estimates for population breakdowns in growth at those levels and for subpopulations.

The work is guided by a firm commitment to protect confidentiality of data and small size cell rules are enforced.

The essence of Health Query is captured in the statement on page 19 of the vision for the 21st Century Health Statistics document.

That statement is, if health statistics are to play their role in improving the population's health, the users of health statistics data cannot be confined to epidemiologists, statisticians and other public health professionals.

The State of California Center for Health Statistics has boldly endorsed this approach through their participation in the health query effort.

NHF strongly believes that providing an experimental environment for public entities can be a key component of supporting innovation.

Through years of working to build a relationship of trust and mutual respect, we have learned that the public private partnerships cannot be casual references and proposals to funders or policy recommendations. Public private partnering requires time and resources.

Funds have seldom been earmarked for development of these collaborative efforts. It has been the good faith of everyone involved that has made them possible.

The indirect links to commercial support that NHF has been able to broker has also been helpful, but building the relationships with commercial partners also requires time and resources.

It is particularly helpful to have a high level of business savvy in order to understand what introductions and opportunities for visibility will be helpful to commercial partners.

The challenge of creating these working partnerships is the primary issue I wanted to raise, but there are other aspects of Health Query that can be helpful to illustrating how the concepts and the work group proposals are being applied.

Health Query attempts to build the relationship between personal health information, clinical data, and health information.

Many of the data sources allow for zip code level reporting and mapping and many use a combination of public and private data sources, to create a blended data source.

All sources are clearly identified and a how-to-use section does warn users about referencing Health Query reports without citing the data sources.

NHF knows there will be many who criticize the sampling techniques of KAKI, the private demographic data source that has been used, but we are ready to take the criticism.

The key metric that guides our work is whether the tools are used for making practical decisions regarding where to focus health resources, conduct research to underserved populations and advocate for needed services.

These are all needs that NHF has identified for programs we provide and programs provided by other community-based organizations.

I will conclude by going back to the issue I mentioned as I began, the cost of change is significant and funding from public and private sources will be needed to implement the many excellent proposals of the work groups in the early stages of reengineering, collection, transfer and use of health information and data.

If the public and non-profit sectors are going to play a major role in this change process, more resources must be identified.

Most partners in the commercial sector are not interested in funding the process, because their orientation is toward providing solutions.

Much more experimentation is needed before new, commercially viable solutions can be marketed, and the reports of both work groups are silent on where the innovation capital will be derived.

Based on NHF's early efforts, I would recommend that public and private sources of funding be made available and the role of philanthropic support in creating and sustaining public private partnerships be encouraged as a key to change and innovation. Thank you very much.

DR. FRIEDMAN: Thank you very much. Dr. Lee?

DR. LEE: Thanks very much. I have been asked to focus on, first, the barriers and then recommendations, particularly as it relates to what the Federal Government might do.

My remarks are based on work that has been done by myself, my son, Paul Lee, and his professional colleague, Ben Bramovice(?), both of whom are here.

We will be submitting a more detailed report, either next month or by December, really reviewing these issues in somewhat more detail.

I would also make note at the outset that the reports, which I think are excellent and are a major step forward, build on a great deal of work that has been done in the department, actually some of it dating back to the foundation of the National Center for Health Statistics.

Some of it is rooted in the work that ARPA did in really developing the ARPAnet, which became the internet, and then some from the legislation enacted first in 1991 and then in 1993, the high performance computing and communications act of 1991, and then the telecommunications act of 1993.

I would say that observing the department, I think the reports don't reflect sufficiently how much progress, in fact, has been made within the Department of Health and Human Services and, in fact, in a number of other federal agencies during this time.

On the barriers, I think that they are well described and outlined, and I would certainly agree with those.

I would agree with the overall statement that the barriers are not primarily technological, but are legal, societal, organizational and cultural in nature, and I will say a little bit more about that later.

Mary Jo Deering had earlier done a very, very good paper which had reviewed some of these, and described the barriers as cost, geographic location, literacy, disability and capacity.

I think that is another way to think about the barriers and then, how do we address them.

The testimony today, much of it dealt with the medical care system, or the personal health care system. There wasn't much, although there were a few comments -- and Jonathan certainly touched on it -- on the community health dimension of the three dimensions that the report speaks about.

That move to include a community health dimension is, I think, a major conceptual milestone in moving us forward and integrating population health strategies into the national health information infrastructure.

There are a lot of barriers. There are some others that have been described in a working group within the department reporting to the assistant secretary for planning and evaluation.

Some of those overlap with some of those that are in the report. Lack of adequate capital funding, fragmented approach, lack of collaborative effort, gaps in defined areas of need, lack of unifying plan of development and implementation, untimely, unsuccessful implementation, lack of consistent quality and quality control, lack of uniform data standards and lack of authoritative mandate.

Now, I will speak about two of these in particular, and ones that I am more directly familiar with.

One is the issue of collaboration. Jim Neeson(?), when he was assistant secretary for health in 1991, established a task force on state and community data.

That task force initiated a review that was very extensive and I received the report from the task force in October of 1993, when I was serving as assistant secretary.

It was entitled, Inventory of Public Health Data Projects and Systems.

That report included a description of over 200 different data systems in the department that related to health or health care.

You had the vital and health statistics, you had population health surveys, health care services, utilization, expenditures, disease surveillance, research findings and reporting requirements for federal grant and aid programs.

Many of them, of course, were the silos related to those grant and aid programs, which have created some significant problems.

Seventy-five percent of the data systems related to infectious agents, disease states or medical treatments. Less than 20 percent could be in any way related to the population health.

Some of those, like the health and nutrition examination survey didn't deal with some of the very big issues that we have been hearing about in terms of the determinants of health.

Within the department, the 2001 health informatics initiative, I think, begins to address some of these issues. I think in the report it would be helpful to have that described as well, as to what is, in fact, currently happening.

Three areas of importance, I think, funding of state level projects that apply new informatics and statistical techniques to model population health dynamics.

Second, linking health and human services information. Again, we heard several comments earlier about how important that is.

Third, the creation of new informatics methods to assess discrimination. With the health disparities and with the evident discrimination in personal health care, that can be very important.

Well, the current system is clearly dysfunctional within the department and the separate agencies. Some people on the Hill tell me they are each up there competing against each other, and one agency telling the Congress, the appropriations committee, take money away from the other to give it to their favorite programs. That doesn't exactly solve the problems.

We need a leadership around the issue of collaboration. We also need some objective things such as formal interagency agreements, that include personnel, budget, equipment and space assigned to collaborative tasks.

We can accomplish a good deal with this. We need to include accountability, because the big argument is, unless we have these separate silos of categorical reporting systems, we can't have accountability to the political body, namely, the Congress.

We can also establish less formal collaborative networks and a lot of that has been done. One of the processes that contributed to that, I think, is the Healthy People process, and it is one that fosters much more sharing of information and collaboration around common problems and common goals.

Collaboration is also needed much more with state government and local government. Instead of having the state as partners, the state is often seen, or local government, as another interest group.

I was asking Jonathan earlier, if they got the waiver from HCFA, for a Medicaid waiver, which was absolutely essential.

They were seen as an adversary as opposed to part of a public unified effort of the federal, state and local government to solve a problem.

Of course, we have dumped on Los Angeles County, both the Federal Government and the state, a gigantic problem of the uninsured. We say, sorry, that is your problem. That isn't going to work.

We have to have a different view about collaboration. Well, let me move to recommendations for the Federal Government around leadership, funding, administration and management.

What we are proposing is what we have called a health information and communications for America initiative, a $14 billion investment and a 10-year initiative, that will serve to build out the national health information infrastructure, and we will be submitting details of this when we submit this later report. Let me give you some rough figures.

First of all, in the White House, there needs to be a highly competent staff in a health information and communications office.

It could be in the domestic policy council. It could be in what I hope will be a council of health advisors, like the council of economic advisors, in the White House.

We are talking about a trillion dollar economy, a seventh of the economy, and we don't have the kind of focus that we need at that level.

For overall management, the Secretary or the Office of the Secretary in the Department of Health and Human Services.

We would suggest there, over a 10-year period, about $675 million available funds.

This would assure all facets or all parts of the department really collaborating and working together around these issues.

Third -- and this is a critical element -- a new health information, communication and data agency should be created.

This would be the focal point for the day-to-day management of the development of the NHII. It would strengthen the capacity for data policy and data development and increase the analytic capacities and information dissemination channels and increase the effectiveness, I think, of the communications.

It would be formed by combining the National Center for Health Statistics with the major general purpose survey activities currently conducted by a variety of the operating agencies or divisions.

It would also have this policy analytic capability and it would be really the central, I would say, brains of the operation at a professional level.

Within the operating agencies, of course, many of them now have huge operations. The role of the National Library of Medicine was mentioned earlier. NIH has multiple data systems, the Centers for Disease Control, HRSA.

We would suggest that probably around $5 billion will be needed in those operating divisions over a 10-year period.

Then we look across the departments, the Department of Transportation, Housing and Urban Development, Education, Justice, Treasury, all have significant health programs and all ought to be part of developing this information system.

The Environmental Protection Agency, I should add, for sure.

Then with the states, there need to be significant grant and aid programs. Senator Kennedy and Senator Frist have proposed a public health infrastructure legislation.

I think if you think about the national health information infrastructure, you think about the Hill-Burton program.

That was a collaborative venture with the Federal Government, with the states, with planning grants initially, and then funding through the states for both public and non-profit institutions at the local level.

We need to have a similar vision, a similar strategy. I think with what has been accomplished with federal leadership up to now -- we have heard all day a lot about the private sector and how much is going on here and there, and we have heard almost nothing about ARPA and the role that ARPA played.

Without ARPA, we would have had none of this. Without the military, we would have none of this. We have got satellites now that are circulating that will make possible next generation wireless communication that, without those, again, you would have a hard time getting those funded, except out of the NIH budget might be the one place you could get that funded.

So, there needs to be a recognition of where the leadership has come from, how much has been accomplished.

I would suggest that this kind of effort, and I would hope that the committee would seriously consider, in its final report, a proposed or several proposed implementation plans.

I would suggest that this is probably a minimum figure. But if you think about the testimony that was made earlier about how much it might cost, $200 to $500 per person, in the auctioning of the band widths that the President has now mandated for 2002, in Germany I think they charged something like $600 per capita, so that the company had to pay those who got the band widths significant amounts of money.

You could easily generate $60 billion, which would be the overall cost, simply out of those auctions. But you need to preserve band widths for this health information infrastructure.

The Defense Department has got it, of course, and will continue to have it, and the bioterrorism piece is probably protected.

If we auction off all the band widths and we don't have any protected ones for either the Department of Health and Human Services or the Public Health Service to develop this infrastructure, we will be making a big mistake.

A couple concluding comments. One, I would like to see in the report more history. I have mentioned briefly some of the developments that I think might be included.

Also, what is happening now. We are in this tremendously dynamic period. The next generation internet is in the process, mandated by legislation, in the process of development.

At the same time, communications technologies, we are now at what they call the 3G, third generation now developing with these broad band widths and wireless communication with the high performance internet.

Again, we need to get some sense of that in the report, and I didn't get enough sense of that.

The other thing is in the conceptual framework, which I certainly agree with. Jonathan spoke about it briefly. Others have spoken about it in their testimony.

There has been a very good report just out from UCLA. It is a RAND report from the UCLA Center for Healthier Children, Families and Communities.

They take that conceptual model, the health field model, and develop it by life course and longitudinally. Jonathan mentioned the need for longitudinally.

Jonathan mentioned the need for longitudinal. I would suggest that you might want to consult the report, consult the authors of the report, and develop that conceptual basis for the health statistics.

We have seen that now in Healthy People 2010. We have seen it in some of the documents from the National Center for Health Statistics.

The difference between Healthy People 2000 and Healthy People 2010 is 2010 is based on a determinance of health model, first time, I think, that we have seen that.

We have also seen, within the Institute of Medicine, from the report in 1988 on the future of public health, to more recent reports which deal with community health, and the one report that was in 1997, improving health in the community, a role for performance monitoring.

Again, it is a conceptual basis based on the determinants of health model.

I think you have done a really good job. I hope that this continues to move forward and we will certainly submit, for the record, more detailed comments. Thank you.

DR. FRIEDMAN: Thank you, Dr. Lee. We look forward to receiving your report. Mr. Crouch?

MR. CROUCH: I would like to thank you all for an opportunity to address this group. It is always a thrill to be in the same room with Dr. Lee, whose thinking is so global and broad.

I would like to bring us down to a very small focus, and I think that is part of the joys of the data issue, is that both at the meta level and at the most minute level there are things going on and change that is occurring that is relevant to your report.

I want to talk a little bit about the California Rural Indian Health Board, the organization which I am executive director of, a little bit about the environment in which we work, make some suggestions to you about the relevance of the Indian Health Service to this vision that you have put together, I think, so ably, and then give you some thoughts about the interim report.

I have had the honor of serving as the executive director of the California Rural Indian Health Board for the last 15 years.

It is a consortium of tribally operated health programs, primarily funded by the Federal Indian Health Service.

We represent 12 tribal health programs in California. That is about 56 provider sites. We work in association with 44 federally-recognized tribes, covering 17 counties in mostly rural California, provide about half of the health care services to the Indian community in rural California, servicing a little over 30,000 individual people.

Another way to think of CRIB is a virtual organization. There are greater than 35 routers in the system. They are servicing and maintaining over 200 e mail addresses and we operate over the IHS established backbone, which is part of the FTS system.

It is a system that, up until recently, has been essentially paid for at the national IHS level, which we are now beginning to see those costs drop down to the next level of the agency, and ultimately on to those of us who have had the benefit of that free ride for these many years.

Some of the wonderful things about being part of the tribal health program is that, under the 638 contracting law, we have a right to reprogram federal funds, to carry over federal funds from fiscal year to fiscal year and to exert true local community control over our health care system.

Some of the bad things about being part of the Indian Health Service system is that we are the recipients of a legacy information system that is based on the VA kernel, that is written in MUMPS, that is so archaic that, in order to certify it for HIPAA, only IHS employees are competent enough to provide that service, which is like auditing yourself.

The truth of the matter is that the virtual reality of the internet and information systems that might be internet based, or electronic information systems are really ideally suited for the Indian community.

We are a small population dispersed over broad geography and, of course, there is a lot of health pathology in the community.

One of the things that I say frequently to groups like this is that the trouble is the measuring health status and utilization for the Indian community, because we are so small and we are so isolated that it is very much like measuring quarks.

It takes a football field sized infrastructure to catch a very brief and small event, that is significant from our perspective as part of that community.

The Indian Health Service resource patient management system, which I referred to earlier, is clearly a dead end system.

The IHS itself is divesting itself of various components. There are 33 component parts. Some of those, like pharmacy, just recently we were told by the IHS that they will no longer be updating that software and we will need to go to some sort of off-the-shelf system to maintain pharmacy control and reporting.

The exciting part about that is that, through some philanthropic work here in California, our organization has been able to get funds to carry out some strategic planning and information systems.

What was wonderful about reading your report is how much your view of the information that you want to capture, and think that the rest of the United States should be thinking about and struggling with how to design and fund, is very much the same information that we have been seeking and thinking about in our small corner of the world, that we think would be useful to improving the provision of services directly to patients.

It would be information systems that would better serve the providers of that care, as they have those encounters with those patients, and better serve the managers of those systems, like myself, as we try to allocate scarce resources.

Your basic idea of having information at the individual, provider and community levels, I believe, is exactly right.

The question is how do you integrate that information. I don't have a lot of sunshine to share on that idea because, again, we have struggled only in some very small attempts at doing exactly that, but I thought I would talk a little bit about what those are.

A number of years ago, a Congressional report was mandated on the basis that the health status of the California Indian population would be very much different for those that were federally recognized and those that were un-federally recognized.

In fact, the theory was that the un-federally recognized Indians of California probably weren't Indians at all.

In 1992, we carried out some research, in conjunction with the University of California. The upshot of that research was that the non-federally recognized Indian people, because they did not have access to a broad array of health and non-health services that are provided to the Indian community were, indeed, suffering more greatly and had a lower health status than the federally recognized tribes.

This was pregaming, and of course, gaming has made a big difference in Indian incomes, and income should have a big impact on health status.

More recently, we have been working with the Tides Foundation to develop a strategic planning process to help us identify an off-the-shelf information system that would address the issue of provider systems.

What we find is that the Institute of Medicine's idea of an electronic medical record doesn't really exist in the sense that we had hoped it would when we first heard about the idea, but that the market is moving quickly in ways that might facilitate that.

We hope that, by the time we have decided and have located the capital necessary to purchase such a system, that the market will have provided something that is vastly greater and more helpful than the IHS RPMS system.

We are doing some linking studies that I think are also relevant to your idea of community and individual health record information.

The number for about 30 years now, matching studies between birth records and death records in California, have shown about a 300 percent undercount of Indian ethnicity in that data base.

Recently, through some linking work where we joined the IHS patient registration data base, which has excellent information, the only validated information on Indian status, and several other identifiers that make it easy to do linking studies, including Social Security number, which exists in that data base at about 83 percent rate, we linked the IHS RPMS patient registration data with the Medicaid paid claims data.

We found, again, almost a 300 percent undercount of Indian ethnicity in the Medicaid paid claims file.

We believe that, although we did that study to sort of get a health profile of the Indian community, that that study has led us to the conclusion that replicating it on other state data bases would be useful to look at connecting known identifiers for Indians with things like the cancer registry, the diabetes registry and others.

Again, this is the simple version of things that you all have suggested would be useful in a national health information infrastructure.

The last thing I would suggest is there was a lot of talk today about payment systems. In the Indian Health Service, you should understand, it is a domestic discretionary program without a defined benefit package.

Consequently, over the years, the level of funding available to support that undefined benefit, which no one can take recourse against the government if it is not provided, because it is not defined, there has been an erosion of service level.

Currently, we have just completed a national study called The Level of Need Funded for the Indian Health Service.

It has been the first attempt to do actuarial based resource planning and, subsequently, resource distribution for that agency.

What were the findings of that review? The Indian Health Service, with a $2.4 billion budget, currently spends about $1.8 billion on the equivalent of the federal employees benefit package, on the Indian population that is dependent on the service today, which represents only about half the Indian community in the country.

Secondly, that short fall or underfunding necessary to provide that benefit package is at about $1.2 billion.

So, the agency is basically operating on 60 percent of the funds that they need.

Looking at the resource distribution side of that agency's operations, you find that that problem is exacerbated by the fact that those resources are not distributed equally.

Tribal health programs in California, in some instances, are operating on less than 35 percent of the identified target funding level for this geography.

Conversely, in some areas, where the congressional delegates have been much more focused on the Indian community, that number reaches as high as 89 percent of the necessary funds.

Although the IHS mission is much broader than the provision of personal health care services, this measurement and this dis-equity is significant.

I believe that if there was a national health information infrastructure, and if that infrastructure included careful attention to issues of payment and ethnicity of Indian people, we would have an easier time arguing with Congress about the underfunding level of our community in this particular agency, and also comparing more broadly health status issues around access to health care with the dominant society.

In closing, let me give you a couple of review comments on the report.

One, your standards to foster interoperability and communication between data systems are essential.

I believe that ultimately, although the private market will seek to move toward setting standards, ultimately there is an important federal role in doing that.

Secondly, I absolutely concur with the idea that the three dimensions of health care data are significant, and that thinking globally about how those three are interconnected from the get go, will give us a better outcome in the years ahead.

Obviously, we believe that personal data sections should include information on tribal identification. Yet, sadly, there are so many conflicting and differing views of that terminology that it is difficult to envision exactly how it best should be captured, although a text format that was being discussed earlier this morning obviously would have some help there.

Lastly, the Indian Health Service should be understood not only as a payer of care, because it is not really an insurance program, but it is nevertheless a provider of care in multiple ways.

It should be included as a system of care that is reviewed and specifically identifiable in your system.

Lastly, to keep my eye on the dollar, one of the reasons to hope for better information systems and better health status data is to direct scarce resources.

Facilitating billing in any sort of health care management system is a critical aspect of that. It is one of the failings of the current IHS RPMS system.

It is particularly a problem given the Congressional view that the Indian Health Service is funded through both direct congressional appropriations and billings to both Medicare, Medicaid and now the new SCHIP program.

With that, thank you for providing leadership in this field. It was a joy to have a chance to visit on the internet your reports, and to look at some of the bibliography and today, to see the people whose names were listed there.

If at all possible, I would encourage you again to think about the Indian Health Service as a test pad for some of these ideas.

I believe their broad perspective on public health, and their mission to elevate the health status of the Indian community is very compatible with the ultimate goals of your proposal. Thank you.

DR. FRIEDMAN: Thank you, Mr. Crouch. I would like to take the opportunity to thank all of this afternoon's presenters for a really excellent and very helpful series of presentations.

We have about 20 minutes for questions from members of the committee and Dr. Sondik. Then we are going to adjourn and we can continue informally after that for those people who can stay. Let me open it up for questions from members of the committee and Dr. Sondik.

DR. LEE: Could I make just one additional comment?

DR. FRIEDMAN: Yes, please.

DR. LEE: That has to do with the community. Both Linda and Jonathan spoke about it. I think there is a great deal going on, a lot of it funded by community foundations, the Kellogg Foundation, the Casey(?) Foundation.

How you relate to that, and how these two reports plug into that really reflect that.

I mean, I talked a lot about the technology. I think it is equally important to reflect in the report, there is this very, very dynamic civic engagement movement going on and, in the health field, probably involving at least a thousand different communities and organizations.

Jonathan mentioned the need to have data, and Linda did, in the hands of the people at that local, neighborhood or community level.

Hopefully you can address that in more detail in the report and possibly even have a hearing where you would really address it more specifically and in more detail.

I think it is mentioned in a number of places, but it doesn't come through, I don't think, with the force that it needs to.

DR. STARFIELD: Phil, I wasn't sure I had it clear as to what effort you were talking about with the $14 billion. Is this something that is parallel to NHII?

DR. LEE: No, this would be the mechanism within the Federal Government to develop the national health information infrastructure, with White House leadership, with coordination and management, direction at the Secretary level in the department, with a new agency, with greater resources, significantly greater resources, and broader role, both in policy and on the technical developmental side, and coordination.

I mean, one of the problems is this tremendous fragmentation within the department which impacts every state and every community that is trying to get some coherent picture of what is going on in this community.

DR. STARFIELD: So, you in fact were suggesting it as the road map for NHII.

DR. LEE: Absolutely, yes.

DR. STARFIELD: Not a parallel thing that is going on.

DR. LEE: No, as a road map, absolutely.

DR. NEWACHECK: I agree with your point, Phil, basically about the notion of doing a better job of at least paying attention to what the communities are doing out there in terms of collecting and disseminating useful information on health statistics and health of the population.

I don't think we really heard that perspective so much around these committee workshop hearings.

DR. LEE: Also, Paul, what they call health statistics. They are concerned about -- as somebody talked about, I think Linda -- how does a disabled person get on the bus to get to the clinic that can meet their needs, and can they get a mammogram, and is there an access.

What we think of as health statistics, they have a very different view of it, and I think you need to hear it.

MS. MOYA: I was trying to represent the they. In my remarks, I was trying to represent the they. We are a community based organization, non-profit.

All of our work has grown out of our need for information to make real-time decisions. When we have a grant to do outreach to low income families, to connect them to either the CHIP program or to Medicaid, when you go and look at some of the data that is available from 1995, and is it broken down by the subpopulations, there is nothing that allows you, at a zip code level, to figure out how much resource you need to apply in order to get families to enroll their kids.

I think what we have done is organize the end users of the data and let them help to develop the systems. I know Linda did mention that.

Our effort with Health Query is totally about enabling the end users to ask the questions. Let the technologists, then, figure out how to make it work, the statisticians.

They are really behind the scenes, though, as far as decision making. The questions are paramount from the community-based level.

Now, we have involved consumers to some extent, but that is more ambitious and that is probably going to be a project unto itself.

I certainly am here representing at least some level of that.

DR. NEWACHECK: Following up on your point about involving consumers to a greater extent in our work, I wonder if Christie could comment on the work that the Foundation for Accountability is doing, in terms of what lessons we might draw from that in terms of involving a consumer perspective in the kind of work that we are doing on both of these reports.

I think it really, as you pointed out, is there in pieces, but it is not there in a strong way. I think we could do a much better job of doing that. Chris, did you have any comment on that?

DR. BETHELL: Did you mean about methodologies?

DR. NEWACHECK: Methodologies or just basic concepts or ideas. You had mentioned, for example, collecting information from consumers in a grass roots way on the internet.

Are there, for example, ways of disseminating information as well that could be used to give consumers a greater voice, give them more useful information than they are getting now?

DR. BETHELL: Absolutely, and we have involved consumers at the development of information stage. So, what is it that you need to focus on. Then, at the data collection stage, of course, getting the information from consumers directly, in most cases, about the health system and then at the dissemination stage.

So, there are three points and the methodologies and focus at each one is a little bit different.

On the dissemination end, consumers are using the internet, they are looking for information at the point of service.

I think that the only way to get them engaged is really to go down to the local communities or use infrastructures that are widespread like the internet.

I think it is really important that both the local grassroots connections for this work and the willingness to at least dip your toe into the internet will both be considered very carefully.

In terms of the actual methods and what we have learned, I can share more about that, but I have a feeling that is not what you are asking about.

DR. LEE: What is interesting, too, Paul, Don Barr at Stanford -- Don is a UCSF graduate and a sociology PhD -- he has been looking at some of the studies that have been done on consumer evaluation of physician performance or provider performance.

What he has had is some of the undergraduates going around doing interviews, and sitting in the offices interviewing the patients before and after.

It turns out, their evaluation of the physician is really based on their evaluation of the receptionist. It is much more that it reflects the receptionist's attitude than it does the transaction in the office, and what the outcome is. You have got to get underneath.

DR. BETHELL: I would just say that is a good argument why you don't ask people if they are satisfied with their health care, and you don't just ask general questions like that. You have to ask about what is actually happening.

Consumers appreciate that much better, too. We asked them to vote, spend $100 on health information. What would you really like to see.

All the time, satisfaction measures lose, once they realize they can actually find out about whether they get the care they need and whether the outcomes occur. It always wins, once you give them the choice.

DR. STARFIELD: I will ask Christine the question I asked her privately, so everybody can hear. You started off your presentation with the 42 percent of people saying they think they have been a victim of medical error.

How does this fit into a framework or how much does it modify a framework.

DR. BETHELL: We look at, for each component, say living with illness, we will look at outcomes process, experience of care. Generally speaking, we have not defined process in terms of what was done that shouldn't be done, but was what should have been done, done.

I think it is one of the areas that we need to really enrich our framework with. We are doing that now, especially in the light of the medical errors report. Are you talking about inappropriate care?

DR. STARFIELD: Yes, inappropriate care, but inappropriate care including inappropriate level of care.

DR. BETHELL: Right. Part of the problem is that we try to be evidence based and link the measures to something, and the evidence base is weak in that area. So, that is the difficulty.

We know that diabetics should have retinal eye exams. We don't know if having 10 visits a year is too much.

DR. STARFIELD: And you don't know who should provide it.

DR. BETHELL: We don't know who should provide it, so we tend to steer away from that. Those are the kinds of things that can be collected analytically and provide a lot of rich information so you can learn that.

I think that you can collect information in a way where you simultaneously get information for accountability, policy making and research if you are clever. I am sure everyone here is clever.

DR. SONDIK: This is actually, the morning and the afternoon, I think, was truly exceptional. I am going away with much more than I came with, I assure you of that.

There are a lot of questions that I have. I just have a brief comment, though, since you mentioned outcomes.

I have been in very serious -- and I am sorry to say this -- very serious discussions with people regarding process versus outcomes in quality.

I go away shaking my head at the trade offs that some people pose on this. In fact, the immediate process measurements are really critical. There is a lot of argument that people make about that in terms of going back to the doctor. It needs to be an easy experience and this sort of thing.

I think it is very important in all of this that we, both the health statistics side of this and the national health information infrastructure side of this, which I really see as the overall framework, that we put an emphasis on health status, on health outcomes.

Then, be able to track this over time as carefully as we can, and try to relate it to the extent that we can -- and I think we can significantly -- to the processes that are going on in the health care system, which I think is a combination of surveillance and monitoring and research.

Research didn't come up much today, but I think research has to be at the core of this. It really is the foundation.

A topic that did come up on every panel was privacy. I would be interested in your assessment this afternoon, as to an assessment of how this debate needs to go.

I think it is going to peak. I think as someone said, I think this afternoon, that we really haven't seen the debate yet, and it is going to come. I am convinced of that.

I would very much like your assessment of how you think this needs to go in order to realize the vision we are talking about.

I am concerned we could have a direction here, a national assessment of privacy that, in fact, will put the lid on the sharing of information that is absolutely crucial to this vital system.

MS. MAYA: I addressed privacy in my remarks, and talked about the risk and reward and the fact that that debate has not yet occurred at the consumer level. That is really where we are focused in looking at personal health information and how that can be collected in new and more dynamic ways to really build community health profiles from the ground up.

I think sampling techniques are valuable. In the ultimate scenario for the future that I think all of us would like to see realized, it is where we are really collecting that data.

At the same time, we are protecting the privacy and confidentiality of individuals.

The risk reward conversations -- and I think these really have to be conversations and there have to be hundreds of thousands of these conversations occurring around this country -- they have to be informed.

That is a role that this committee could definitely play. How to inform the conversations so that we are talking about real risks in terms of disclosure, when personal health information is available electronically.

What are the rewards when we can capture community level information and tie that with other data sources related to environmental factors, communicable disease.

I think that is really a challenge that I would put to you in terms of how to inform those conversations about the risk and reward of sharing personal health information in an electronic environment.

DR. LEE: Just a couple of comments. Somebody made the comment that in Europe there is more trust in the ability of the government to protect the privacy of the individuals in their health care systems.

We are talking about not just in the medical care system but we are talking about in the public health system or the community health system.

I think we have a much better record in that area than we do on the medical care side. I mean, if people knew clearly with the paper records -- I mean, their records are everywhere.

People are talking about them in the elevator, they are available in the record room, they are available on the wards. They are available all over the place for people to look at and invade, if you will.

People have to have a much better understanding, it seems to me, that you can produce a much greater assurance of privacy protection with electronic systems, with built-in technologies that can assure, I think, the protection or where they minimize the risk of unauthorized disclosure, without having it where you are paralyzed by these restrictions.

In Minnesota, the legislature passed a bill that would have prevented the Mayo Clinic from doing research on the records at the clinic, and they have been doing those for 75 years.

The health department and the Mayo Foundation went back to the legislature. With the help of both the state medical society, but particularly the health department, they were able to get that reversed and able to get some reasonable protections, so that that research could go on.

You could cripple research with these kinds of unintended restrictions that some people think are necessary.

MR. CROUCH: I would like to put a cultural twist to that. I, too, am very concerned about a backlash in the dominant society about electronic information that would, in essence, freeze up what the potential of the whole transition could be.

It would be a horrible disaster, and I agree that we need to talk about the costs and the benefits of what is possible.

The Indian community is primarily a prima facie community. We live in transparency, known to each other. It is only in the dominant society where you have this loss of community, this loss of interrelationship, that privacy, in the sense that some people are so tenacious about, even becomes doable.

We are not sure why it is desirable, but it is not even doable in a small prima facie community, where people know who you are, who your mother was, what diseases she had, where you have been drinking, et cetera.

There is a cultural aspect to privacy. I think that somehow we need in America to rebuild community so there is a sense of trust that reduces the fear of information flow.

We need to be more honest about our mutual humanity. I am afraid that Congress or state legislators may restrict the use of information and the sharing of information in such a way that the real gift of the technology could be lost.

DR. SONDIK: Could I make one more brief comment? This morning, I think it was Blackford used the term property rights.

I thought that was a neat concept that I actually hadn't beard before. I think it emphasizes the point that, when any of us interact with the health care system, there is a notion that we are participating, that our experience is part of a public good.

Somehow we want that public good used for good and, at the same time, we want our own contribution to that protected.

It emphasizes more the idea that all of this is a trade off, much more so than the word privacy does, which gives the notion of complete, absolute -- the sort of absolute nature to this.

We are talking about using this experience as a public good.

Another point, Phil, I didn't hear you mention training as you went through the various points in the plan. I think training is a critical piece to it. It is an area that, as I talk to people about issues at the state and the local level, it is absolutely vital that training go on that is of a unique type that we have today, so, people can work with local issues and problems.

At the same time, training that enables them to break out of this cocoon of defining health in a narrow way but look at the determinants of health, which people tend to do at a local level, more so, frankly, than we do at the federal level and need to do even more so, to come up with viable solutions to these issues.

DR. LEE: Commenting on the training question that Ed raised, Mary Jo's paper talks about illiteracy. You have got a significant part of the population that cannot even access the system.

We have made a much bigger investment in linking schools to the internet than we have in the health sector.

Individuals, to access and make use of it, it has to be not just trained people who are running systems, but we have to train people on how to use the system.

So, it is a much bigger training job than we have ever imagined, and I think we should mention that in the report, about the magnitude of the task. It should start in the schools and maybe even before the schools.

DR. FRIEDMAN: I would like to hear one more final comment from Mike Rodrian before we formally adjourn. Then those people who are available can continue informally.

MR. RODRIAN: I will try to make this very brief. Twenty years ago, Marshall McLuen talked about the coming electronic age and talked about the global village. I think really we are getting there.

In a global village, everyone knows what everyone else did last night. That is something that I don't think any of us are comfortable with.

We have to become increasingly comfortable with it, because it is going to happen. In that light, property rights to data about your health status bother me.

Property rights, if I carry that out a couple of steps, I could say then, like with ownership of any other intellectual property, any time you use my data, I should get paid.

I don't think any of us mean that. On the other hand, I think that, again as I said in my remarks, we need to pay particular attention to how we punish -- I will use that word -- those who use that information irresponsibly or inappropriately.

We need a balanced kind of approach where, yes, we keep private things private to the extent we can. We also put equal emphasis on punishing those that use that inappropriately and make them behave in a socially responsible kind of manner.

I think that is real important. That data does need to be shared in ways that we do not envision at the time we collect it, but we need to build the trust of the community that we will not countenance inappropriate use at the same time.

DR. LEE: I think on the public health side, again, we have done that reasonably well. Also there are laws that, if people transgress it, they do get penalized. I think it is a very important point.

DR. SONDIK: The point I was making was that we have a sort of dual notion about this. We want the data used. At the same time, we don't want it violated, as far as we are concerned.

In other words, we are claiming our own personal right to it. We are saying at the same time, we are going to give it to a particular sector to be able to use. That is a tricky balance but that is what we have to achieve.

MR. RODRIAN: We want it used to our benefit but not against us.

DR. FRIEDMAN: I would like to again thank this afternoon's presenters and this morning's presenters for really doing us a real service, and helping to move us forward on both interim reports. With that, we will adjourn.

[Whereupon, at 4:45 p.m., the meeting was adjourned.]