Transcript of July 10, 2000 Joint Meeting of NCVHS Workgroup on Health Statistics for the 21st Century and the Workgroup on National Health Information Infrastructure

07/10/2000

[This Transcript is Unedited]

National Committee on Vital and Health Statistics

Workgroup on Health Statistics for the 21st Century
and the
Workgroup on National Health Information Infrastructure

July 10, 2000

The Westin Hotel O'Hare
6100 River Road Rosemont, Illinois

Proceedings By:
CASET Associates, Ltd.
10201 Lee Highway, #160
Fairfax, Virginia 22030
(703) 352-0091

TABLE OF CONTENTS


P R O C E E D I N G S (9:36 A.M.)

Agenda Item: Call to Order and Introductions

DR. LUMPKIN: My name is John Lumpkin and I am chair of the National Committee for Vital and Health Statistics. Today I am here as sort of a dual personality. Dan Friedman who is scheduled to chair this morning's session is stuck on a runway in Boston which wouldn' FACE="Courier New">t be so bad except that he was supposed to get in here last night and spent about six hours in the airport in Boston last night because of the weather in Boston and now he is stuck in Boston because of weather in Chicago.

For those of you who may not be familiar with the committee, this is our last hearing we are going to hold in Chicago. The first hearing that we held here about two years ago, we had a storm that also got in the way. It was a political storm over the unique identifier for individuals and now we have an actual weather storm so we will have to think long and hard before we come back to Chicago despite the fact that certainly it is near and dear to my heart. And, as Clint said, although he has weathered his own individual storm over the last week.

So we are going to start off with some introductions. We are going to sort of play loosy goosy with the schedule. There may be some people coming in late who because of weather and planes may arrive late. There may be some people we may ask to go early so if you are here and you have your stuff for the morning session, don't be surprised if I bring you on a little bit earlier than planned and I will beg your indulgence, So let's start off with introductions and we will start off with members of the committee and staff to my left.

DR. GREENBERG: Good morning. I am Marjorie Greenberg from the National Center for Health Statistics, CDC and I am executive secretary to the committee.

DR. MCDONALD: I am Clem McDonald, a member of the committee and I am from Indiana University Regenstrief Institute in Indianapolis which is close to Chicago.

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

DR. WEINZIMER: I am Rob Weinzimer with the National Center for Health Statistics.

DR. HENDERSHOT: Gerry Hendershot, National Center for Health Statistics.

DR. DEERING: Mary Jo Deering, Office of Disease Prevention and Health Promotion and lead staff to the National Health Information Infrastructure Work Group.

DR. GIACHELLO: Aida Giachello. Good morning. With the University of Illinois, Chicago, Midwest Latino Health Research Training and Policy Center.

DR. Merryweather: Pat Merryweather, Illinois Hospital and Health Systems Association.

MR. ZANGRI: Al Zangri, Naitonal Association for Public Health Statistics and Information Systems.

DR. LUMPKIN: And if we can ask the audience to please introduce themselves.

[Audience introductions]

DR. LUMPKIN: Great. As you know, Dan has a quite an extensive presentation that he has prepared. I would like to show you his slides except they are in his laptop which is in his office or on his floppy disks that are in his possession on the runway in Boston. However, since I did get some warning last night, I have a few introductory slides I will go over to the laptop to present.

For a number of years I have been preparing my presentations in Powerpoint, but I have to admit that I have yet to, I don't frequently give my presentations that way. I happen to be a skeptic about technology in that I believe that technology should be relied upon where it is reliable. I learned that lesson the hard way mainly because I used to be on the leading edge of technology on my home computer. Now I have gotten to the point where I usually stay a generation or two behind in processor so at least I know that the technology will work and certainly the software doesn't demand it.

But I do have a presentation on Powerpoint and I did bring overheads just in case because I have learned the hard way you can't always count on it.

We will talk this morning about health statistics, this afternoon about the National Health Information Infrastructure. These hearings are being held together because they are very integral parts of the same thing.

We are going to talk about first that what do we mean by health statistics? Health statistics are, as we define it, are documented health data that can be generalized to a known population. That means either individuals, events, organizations and institutions. Health statistics are collected with the intent to design, implement, monitor and evaluate health programs and policies, to take seemingly isolated events that we deal with in a broader context. We are not too far here from Milwaukee where not too long ago seemingly isolated events associated with gastrointestinal disease and diarrhea and stomach upset, a number of isolated events but when you begin to look at them in context, there is a tremendous number of people who were upset. It was through that work of taking these isolated events, they were able to trace that to the water supply and cryptosporosis was identified and they would be able to take measures and increase the treatment of the water, reducing this major outbreak which involved some 300,000 individuals.

And also unresolved privacy and confidentiality issues, all of these things a part of health statistics and what we look at as can be identified.

The problem with today's health statistics system was first of all designed decades ago which is okay, but the system was designed to answer issues. It was designed to use certain technology, both technology on the hardware side and the software side and, like many things in government, as a governmental system, it moves and changes very slowly, mainly because when you are in government you know that sometimes you can make a case for it. You can get some money to make the system but after that, Congress or whatever legislative body believes that they have solved the problem for at least a generation and it is not until you can re-identify, get the to re-focus, can you change that.

We have developed multiple systems. We have AIDS, vital statistics, we have registry for cancer, for lead, for a host of other things, and we have surveillance systems for various illnesses such as sexually transmitted diseases. But there are certainly some key problems. Some of these problems, one of them which I identified before was that there was an unclear landscape for privacy and how privacy covers the legislation that covers the data. It varies from state to state and sometimes from locality to locality.

We also know that while we have a rich national data, set, the data often cannot be broken down to data that is relevant at the local level.

Other problems that exist with our health information system is it really wasn't designed to handle the complexity and the diversity that we as a country have begun to identify and embrace. Our information systems kind of was able to handle race but the fact that the health issues of someone who was African American through many generations versus someone who is African American and a recent immigrant from Ghana or from South Africa is different. We have not been able to address that. Same thing with those who come from various nations south of the border in Central America and North America such as Mexico and South America as well as other parts of the world which we all tend to kind of lump together as being Hispanic whereas both the racial and ethnic make-up of this population is extremely diverse.

The same thing is also true of the, what we loosely term the majority white population. In Chicago which has a large number of very ethnic neighborhoods, I once worked at a hospital, St. Mary Nazareth Hospital (I worked as a couple of St. Mary's, I always get them confused), it was very interesting because there were three languages that were spoken in the emergency department, English, Spanish and Polish because there was a very large Polish immigrant population and again our health statistics system is not really geared to handle that.

The other piece is that the data that is on the national level just doesn't seem to apply. We have tried to address that in Illinois by using things like the behavior risk factor survey in collecting the data on at least a county level every four years so we can begin to look at trends with the national communities and use those for health planning and direction.

The other problem that we have is that much of the data we collect is not very well integrated. We had a meeting just last week amongst our staff to talk about some of our data related to a simple event, a birth and we had a number of health information systems. We have the vital statistics system, we call it EDC, electronic birth certificate system. So someone in the hospital has to fill out the electronic birth certificate system. In addition, the child may be registered for a state program, for WIC or other maternal and child health systems through a system called Cornerstone. In addition, if the child has had anything that may challenge them in the first few years of life, they may be registered in what we call our adverse pregnancy reporting system, APORS, Adverse Pregnancy Outcome System and immunization registry.

All of these are separation information systems and all of them don't speak to each other which means that everyone sitting at the hospital associated with that birth has to fill out a whole host of forms and computer screens related to one single event for one single person.

Recognizing the problem, the coalition of the National Center for Health Statistics, it was really based upon their initiative, the National Committee for Vital and Health Statistics, the Department of Health and Human Services Data Council and the Naitonal Academy of Sciences Committee for National Statistics sort of got together and began a three-year initiative which we are right in the middle of. And that is to begin to identify the problems of our current health statistics system, identify barriers and gaps and to come up with recommendations for change. This area is really a key component of that.

The issues and questions we are being asked is what health information will be needed, what conceptual framework meaningfully organizes this information, what approaches collection of storage and communication will get us to where it is needed so the information will get to where it is needed, and finally, not finally, last and certainly not least, what privacy, confidentiality and security protection should be in place.

It is kind of appropriate for us to be talking about these kinds of issues in Illinois because, for those of you who don't know, there is a fairly significant lawsuit that is kind of percolating this way in southern Illinois where a newspaper has sued to get hold of our cancer registry. They want to know three simple things: they want to know for each person in the cancer registry what the type of cancer is, the date of onset and the birthdate. Those three pieces of information. We would supply that information to a consultant. That consultant has, with amazing success, with those three bits of information, was able to identify half the people that we sent in the test case so we sent them 100 names, our consultant was able to identify 50 of the individuals.

When you get outside of Chicago, if someone has a diagnosis of Kaposi's sarcoma, he is only going to be one or two cases in the county, so if you know the zip code, if you know the type of cancer and the date of onset, which are the three variables, I am sorry, I may have missed those, but those three variables, a person's identification can be done with 15 percent accuracy.

Unfortunately, the judge in the area where this case is being heard was noted to comment at one point, well, to get that information you would have to use a computer, wouldn't you?

So, sometimes we have to work on these issues and hence some uniform concept of privacy is very important. The events are unimportant. Trends and gaps which we will have some comments about, I talked about some of the demographic and environmental factors, some of the social, economic changes in disease, patterns, both with increase in a chronic disease as well as emerging and re-emerging infectious diseases are having some impact.

We have to put in this category our new understanding of health and health care. When I was going to medical school, we treated ulcers with anti-acids, you treated them with changes in diet. That is not really considered to be very effective anymore. In fact, many ulcers are now treated with antibiotics because we learned about helicobacter pylori which is an infectious cause of ulcers.

One of the interesting side effects of the studies that have been done on the influenza vaccine is that those individuals that have been inoculated with the influenza vaccine tend to have fewer episodes of myocardial infarction during that particular time. Perhaps there is an infectious component. How does that plaque break down which leads to the development of thrombin and the clot formation? Maybe that is an infectious process. We don't know, but I suspect we are going to find out more as time goes on so not only about new emerging infectious disease but newly discovered.

The health care system is in a tremendous transformation. How do we understand what is going on? What are the impacts on health and health care by using this transformation. And, by the way, tremendous amounts of scientific research, the human genome research project being the least but certainly is the one that has been the most traumatic and what are the impacts upon that in the future.

Further trends. Information technology is going through radical transformations. I think IBM just released a small new hard drive that is about the size of this quarter. There is a gigabyte of information. And they continue to get it smaller and smaller.

We have to balance privacy versus the common good, and this is an ongoing issue as people become more and more concerned about the ability of technology to identify them. We have to convince them that there is some importance for them giving up this information - concerns about the quality of data, the resources to collect the data and, of course, the burden of collection going back the birth certificate example or the birth example I gave earlier. All F.O. these are important things for us to identify.

We have held a number of hearings. In these hearings we have identified so far 10 principles. Let me just run through these quickly and then we will go to the first panel.

The first is privacy, confidentiality, security and fair information practices have to be a key integral component of any new health statistics system for the 21st century.

Second, is that we need to have a conceptual framework. This conceptual framework has to be integrated with the National Health Information Infrastructure which we are talking about which is a much more global and encompassing health information conceptual model. I say conceptual framework. Let me emphasize with this, as we will this afternoon, we are not talking about building a new data base. We are really talking about a conceptual framework of how information is collected and used to make health decisions, health care decisions in this country so that people can be put in a position where they can make good, healthy choices and that doesn't require a single data base. How data is accessed can be dependent upon the need for that access.

Third, the flexibility to identify and address emergent issues and the health needs of the population. Obviously, if you are in the middle of an outbreak such as they were in Milwaukee, that system has to be able to respond to that kind of thing which they have had to in the mid-1990s. The usefulness of different levels of aggregation. We tend to have a system that in many ways is a top-down system. It is designed to give us national data dn, if we are lucky, we might get some state data. Yet there are some clear examples of use of information at the community level to guide and direct community health decisions to improve the health of the community. Without having appropriate data, those kind of projects become very difficult and people in communities lose control, they don't feel empowered, they are not as committed to the change process so it is very important for us to consider the impact of those.

The fifth principle is there is a need for compatible standards serving multiple purposes. We need one set of data standards. Sometime within the next week or so, and I have got my fingers crossed, the transaction standards rule will become final. When that rule comes out, there are some 430 data fields that will be defined as a standard and that will be a big step forward but we need to continue to make sure that not only standards for the data and how it is defined but how data is transmitted, how it is packaged and communicated so that it will serve all the purpose for which it is intended.

Number six, unitary data collection for multiple purposes. About five years ago in Illinois, we started a new system called Cornerstone. Cornerstone was an integrated maternal and child health information system. What it is designed to do in a paperless way is to allow a case manager to provide maternal and child health services to a pregnant woman or a young mother and family. This system is designed to allow the case manager to do his or her job, yet is a very rich data system for analysis of what is going on, for planning. But in Williamson County which is a southern county in Illinois, there was a maternal and child health nurse who first used the system and when the client left, she commented as she was looking around her desk, she said, I am done. What she meant was there was no reports to fill out. There were not documents to complete. No time sheets to check because that was all done automatically by the system while she was doing her work. So the rich data collection which this system allows is transparent to the user even though it may go off to the immunization registry or off to the WIC system or off to the well child system. Unitary data collection, one time, she only filled it out once, but it goes for multiple purposes.

Access has to be enhanced, and access at an appropriate level. If you are a case manager, the access obviously to the information is going to be very detailed. It is going to be identified. But issues of taking that information and re-identifying, aggregating it to the appropriate level, to the community level, to the county level, to the state level, to make the kind of decisions is very important, and it needs to be easy to use.

We need to make sure we have adequate, well-managed resources, the data that is used, that is converting the information needs to have some relevance to the policy. There needs to be a reason to collect the data, not just because well, it would be nice to look at.

And, finally, we have to have broad collaboration. That has to be not only collaboration within government but within various sectors outside the government.

Where we are going to go from here? We are going to continue to have hearings. We have got two more scheduled. The third we are trying to establish at this point. After that, we are going to, with our partners, begin to look at the comments that we have received at the hearings, identify the gaps, make recommendations and issue those as a final document in the sprint of 2001.

Any questions? Okay, I think we will proceed to the first panel. Aida, if it is okay with you, because we are going to be transferring your stuff, maybe we will take you second.

DR. GIACHELLO: Yes, that is okay.

DR. LUMPKIN: Pat, will you be willing to start up?

Agenda Item: Trends and Gaps Shaping the Vision - Patricia Merryweather, Illinois Hospital & Health Systems Association

MS. MERRYWEATHER: Sure. Thank you. I have some brief comments. First of all I would like to start off by saying that I think this is really an exciting initiative, to pull together a disparate data systems and information to really work for the benefit of the community and to provide exciting health care information for decision making and policy development.

In reviewing the proposed vision, I would just like to comment, make some general comments and then move on to some specific issues. First, I look at information development probably a little bit different sometimes, coming from a health curve perspective, a hospital perspective but also having experience in working in different settings.

The different ways we develop information are really driving some of these initiatives and some of the issues I will be addressing. First we usually have the "I have a hunch" approach where we think there is an issue and we need to research it. We have seen some exciting data bases come about as a result - the AIDS, the SDS data bases and information. It helps us target areas for health improvement as well as make some policy decisions.

We also have other areas where we don't know should we begin data collection or not? Recently there was the I-M report on medical errors and now the more recent report that counteracts some of the findings in the study.

DR. LUMPKIN: And who was the lead author on that report?

MS. MERRYWEATHER: That was out of Indianapolis. And so we really are left with where does the truth lie? Anyways, looking at this information, it leads us to a position, should we begin data collection on a national basis to address these issues? Is it necessary?

So I think we really struggle with the collection of information for different purposes and we need to make sure that we continuously assess whether the need is there for a national collection, whether it can be done on a small area analysis and results extrapolated as done in the I-M report or if even just a study, a small area study can be performed. So, again, I think we really need to look at whether we need to be collecting large sets of information or smaller sets.

As second way we develop information is almost that we have always done what we have always done so we continue to do what we always do and so we continue to build data bases and information and we maybe do some reports but we are not quite sure of the value of the information that is being derived from that data and I think we need to build into our system a way to assess and evaluate the need to continue collection of every data base that we have out there. They are costly, there are other data that can be collected, and again I think we really need to look at and evaluate and be accountable to those that we are collecting data from as well as using the resources.

The third way I like to look at the development of health care information is a did you know approach. I know that sometimes we have data bases that exist and we find different ways of analyzing the information. For example, with the hospitalization information data bases, we are seeing some trends in the admission patterns into hospitals such as more patients coming in through the ER than ever before. When I started in health care about 15 years ago, we only had about 25 percent of all hospitalizations coming through the ER. Now 40 percent of all our hospital admissions are through the ER.

There is a number of reasons why but the facts are that they are coming through the ER, an expensive route to access health care.

We can also look at ambulatory care sensitive conditions. Now, those diseases have been out there for years but there is a trend, and I know even with the Healthy People 2010, they incorporate ambulatory care sensitive conditions, conditions that require hospitalization but could have been prevented had primary care been rendered, accessible or the patient followed prescribed treatments.

Agin, what we are seeing in Illinois is a continuous increase in hospitalization for these conditions. Over 27 percent of all our hospitalizations are for ambulatory care sensitive conditions. If we take out births and deliveries, the number is even higher, as you can imagine. So again I think this begs the question of using existing data bases, really exploiting their usage so that we make sure that when data bases are collected that they are fully utilized. I know that is an issue that was targeted as one of the gaps, that we oftentimes collect data but we don't analyze data and we don't have the resources so I think any time we go into any data collection effort, we need to make sure that we have the resources available to analyze the information.

Now, there is a couple of other issues I would like to address and they focus on the cost of these data bases as well as their usage in developing intervention strategies and the development of criteria to decide when it is appropriate time to no longer continue data collection. We need to keep in mind that it is very costly to collect information. It is costly on the part of participants supplying the information as well as, and again, I am thinking more in terms of new data, new information systems, as well as those that are the repository of the information or analyzing the information.

IN health care right now, and I hope it is not that way in the future, we are dealing with a very challenging period, with the BBA cuts. It is very difficult for providers sometimes to make decisions about reporting information which we know is key to the future and key for developing intervention strategies and yet you have limited resources and you may be deciding whether to purchase a new piece of equipment or keep or retain that clinical staff person.

So, again, I think we are facing some critical periods and we always need to really keep in mind the cost of data collection.

There are many state data collection efforts occurring around the United States, and I look and I have the opportunity to see many different states that are collecting hospitalization information. I will tell you that it varies in terms of their usage of the information. There are some very rich states that use it for multiple purposes and there are some that don't use it at all. It becomes a collection mechanism, a regulatory mechanism, and I think we need to really make sure that efforts are underway so that the information can be widely used.

Additionally, we need to make sure that when information is being utilized and collected that it is used for policy and decision making and that is something that I really think we need to review is to see when information is being utilized, does it affect policy and how can we better provide information so that it can have an effect on policy.

In Illinois, we have had an opportunity to work with public health and with our hospitalization information and public health with the natality and mortality information and we have put together a community health information system. By putting this information together we are able to look at by community some health trends and make that information available to hospital clinicians, administrators, physicians as well as public health administrators. Again, it is very key information to targeting resources in a community and making sure that those that are out in the community can communicate what are the major issues, what are the major health concerns and try and develop some intervention strategies.

Additionally, IHHA is involved with Illinois Department of Public Health and Loyola Health System on a program emergency medical services for children. It started out just focused on children and it has expanded, but what is occurring is that all of these parties along with the Department of Transportation, many emergency fire and rescue services throughout the state are coming together and linking information together so that the goal is to take people entering the system for maybe the first incidence, maybe a crash, all the way to their outcome so that we can look at the type of crash, maybe some of the side issues that are involved with the crash, maybe no seat belt usage, increased maybe alcohol involved and taking that patient or taking that care all the way to the cost of care and the outcome of that care. Now, again, that is an initiative underway but it doesn't come easy. It has been many years in development. It has taken dollars and resources to build this information system it most importantly has taken the ability to build a level of trust among the participants. That is so key when you are linking information is to have everyone as an equal partner at the table and making sure that everyone is satisfied, building consensus along the way.

I have long applauded the people that have worked on this because, again, it is not an easy task.

Now, when it comes to linking information or making any information available, I think the issue regarding confidentiality is on everyone's mind. The issue is always of the highest priority and we always stop and think how much protection is adequate and how can we insure that patients' protections are being maintained? It is of increasing concern to health care providers, especially when we are in an era when there are an increasing and alarming number of people without health insurance. We need to make sure that we exercise extreme caution to insure that protections and policies are in place to avoid release of patient sensitive information and that no particular geographical area or population are red-lined or kept from obtaining health care information or coverage.

I know some data and information exists already but again I think we really need to safeguard the information so that we don't put anyone in danger of obtaining health care insurance.

Now, addressing some specific trends. In terms of the socioeconomic, demographic and environmental factors, I oftentimes question whether one can extrapolate based upon a community some of the economic status and educational information and I think it becomes extremely difficult to collect economic information on people, especially when their status changes from time to time unless it is on an ongoing basis.

When it comes to, and I think Dr. Lumpkin addressed this issue, the racial and ethnic group status and composition, it is especially challenging in these times as the melting pot continues in the United States and you have such blended populations. But I also think in looking at health information that there is a lot to be learned from having this set of information and to tracking different types of diseases.

I question why there is a lack of response with the census 2000 and I know in Illinois, especially in the Chicago area, there has been a great significance, the lack of response, and we need to figure out why there is such a lack of response. Some people have said it is become of confidentiality of information. They didn't feel it was relevant to report that information. Again, I think this is focused on some of those issues that we are trying to address in this session.

The health of populations is currently based upon surveillance, vital health statistics and hospitalization data. I think there is a lot of information that is missing and that can be, as Dr. Lumpkin talked about, the behavioral risk survey every four years. Should it be more often? Do we need to get information on clinical visits? For example, if we are looking at increases in ambulatory care sensitive conditions, are those patients that are being seen outside of the hospital setting? Are there sufficient resources available?

When it comes to looking at the health care delivery system, there is a demand for information, whether you are a consumer, a health care provider or insurer or purchaser, everyone wants better information and when it comes to looking at quality and outcomes of care, this is a very perplexing area for health care providers right now. Everyone knows there is probably some way of measuring it, not exactly scientific but there is some way. For example, I always tell my friends the best way to look at it is when they come and say well, if you were having this procedure, what hospital would you go to or what physician or what health care service would you access.

As health care providers, we sort of know but we don't know why we know. We know just based upon some anecdotal information as well as maybe some basis of fact so we think there is a way of capturing that information but we are not quite sure how best to do it. I know there are many initiatives right now on a state and federal level and private level that are out seeking to collect outcome measurements. I think this is where the frustration is among providers is right now. We have federal initiatives, we have private initiatives. They are competing. They are not working together. It is frustrating because in some respects you have to report to all of them and we can't get the same parties at the same table. We can't agree on definitions, we can't agree on measurements and we can't agree on outcomes.

So, again, I think this is a major area of concern is that we need to get these parties together. There is a lot of resources being wasted right now by them not coming together and providers are concerned that in about a year and a half or less than a year, they have got to make some big decisions as to reporting that information.

Now, when it comes to public policy and efficacy, I agree that there needs to be more community-based information. I think part of what we are experiencing with legislators and elected officials is that we have national data which is wonderful. The Healthy People 2010, the targets, some of the objectives, the measurements, but we don't have anything we can take back to our local legislators and make it real to them and that is what they oftentimes want to know. How does this affect my community? And so I think we do have to do, not just from the top down but we need to have that information from the ground floor.

When it comes to information technology, I think that is far outpacing the ability of health care providers and consumers to take advantage of some of the advancements. I think that we have collected a lot of information. There are resources out there but as we all know, it is a very difficult position for providers as well as any type of health care organization to put information ahead of patient care.

In negotiating boundaries, I think in Illinois we have been successful in bringing together some of those boundaries. There is still a lot of work to be done, but we at least have laid the framework. It does start by building trust and I think the sooner you can get more parties together, more parties collaborating and the value of that collaboration being profiled, I think you will end up getting rid of all those silos and maybe more linkages out there.

In terms of data quality, undoubtedly there is a lack of consistency, a lack of standards that exist right now. I think we look forward to HIPA(?) In terms of the standardization data it will bring and the ability to do comparative analysis and to, finally look at what is going on on outpatient surgical procedures and have one set of codes and that be working with two different sets of codes. I mean, there is so much value to that information.

We cannot underscore enough the need for research analysis on this information and for feedback to anyone who is providing the information. I think we always short ourselves when we look at data collection efforts. We collect the data, but we don't build in enough dollars to analyze the information and I think again that is where we are building this information, wonderful data bases, but we don't have the resources available to analyze it or the ability to access that information for analysis.

I think we should never lose sight of the importance between the bridge between data and information and that we should always hold ourselves accountable to insuring that information protects individuals, that we make sure it is timely, relevant, cost effective and is used effectively for the improvement of the health status of the populations we serve.

I think this is a wonderful opportunity to pull together different data bases and different entities and I commend NCVHS for shaping this vision.

(Applause)

DR. LUMPKIN: Thank you. What we are going to do is hear from Aida and then at 10:40, Jennifer will be calling in. Evidently the storm that kept her from leaving from Detroit to getting here has probably just arrived in Detroit so she will call in and we will take questions of the panel as a whole. If we have some problems with Jennifer, we may then will take questions from the folks here until we get her on the line. So, Aida, welcome.

Agenda Item: Aida Giachello, Ph.D., University of Illinois at Chicago

DR. GIACHELLO: Good morning. It is indeed a pleasure for me to be here and I am very excited as well. Let me make sure the computer is set up. While I do that, I would just like to always say that I, as a Puerto Rican, I always speak fast and when I have too much to say in a short period of time, I go faster. And sometimes I switch into Spanish or something else. So bear with me, now that we are talking about a world culture competency as you accept me as I am in my fallible speaking.

But anyway, what I am going to be doing, [TAPE CHANGED] in that process to share some additional concerns and challenges regarding a trend and yes, shaping the vision for the 21st century and then in that process I will be sharing some additional recommendation.

I wanted to begin by really acknowledging the committee for their work. I was extremely impressed when I was reading the report. They were short and sweet, straight to the point. I really like the fact that they were able to obtain a national consultation in this process and that many of the issues that we have been advocating for for the longest time appears to be documented in the document. I was very excited with that and I really want to commend your work and to really believe that there is all kinds of exciting things that are happening and I am happy to be part of this process this morning talking to you about that.

For those of you who know very little about me, I just want to briefly give you a little bit of background.

I am at the University of Illinois, Associate Professor, at the College of Social Work, and I direct the Midwest Latino Health Research Training and Policy Center which is a multi-disciplinary center established in 1993 as a result of the Federal grant from the Agency for Health Care Policy and Research and most of the work we do is in the area of chronic condition outcomes research, heavily focusing on diabetes, asthma, hypertension, cancer, maternal and child health and more recently moving into clinical trial activity.

We also follow a participatory health research process of modeling, most of our studies, and we truly are committed in training new minority investigators and training community organizations for that matter in the process of conducting our work. I do have some handouts of my presentation that I will give at the end.

In terms of the minority training, we have trained over 145 minority persons, Most of them are students that range from high school into undergraduate, graduate work, pre-med, as well as practitioner in the field and we are currently doing nationwide training heavily on clinical guidelines and many of the activities that are emerging from our own research work. We also engage in policy work.

In terms of the challenges ahead of us, one of the concerns I always like to raise is the whole rapid population growth of racial and ethnic minority and that our data system from my perspective is still ill-equipped to capture the growing and challenging in terms of health and social needs of this population and just basically to document that as some of the data we have, put them in our data based on the census protection indicated that already we have a 35 percent change, particularly of the minority population between 1980 and 1990 and then again close to 34 percent between 1990 and 1998 with the Hispanic particularly in Asian-Americans representing the faster growing population group.

We also know that in the case of Latinos, because most of the issues that I will be raising have to do with the Hispanic population which is the group I heavily focus on in my research although I do collect data on African American and other groups but one of the challenges we have is that the Latino population is growing so rapidly in areas that traditionally they were not really concentrated and those kinds of communities, in this case states like Arkansas and North Carolina, Georgia, you name it, are really confronting a very severe problem because they are now trying to serve a population for which they know very little and for which the data systems and limitations that were outlined by Dr. Lumpkin in the beginning is a very serious problem in those communities.

And here in Chicago, although Latinos tend to concentrate primarily in the Cook County area, there are other suburban areas like Des Plain. We just completed a study there among Latinos and the problems that some of the suburban communities are confronting, they have a huge influx of Spanish speaking Latinos even in the high schools and they just cannot figure out how to communicate and how to provide culturally sensitive services and some of the things we obviously are doing is providing those kinds of assistance upon request. And obviously in terms of Latinos, you see them concentrated in a number of other states to the point, and most of the data we have available indicates that the Latinos would represent at least 13 percent by the year 2005, close to 19 percent by the year 2030, 22 percent by the year 2035 and one-third of the U.S. population by the 2100. Some of the figures that the U.S. Census indicate or project, says that by the year 2100 there will be about 190 million Latinos in this country.

So in reality, traditionally we thought that when we addressed the Latino issue, we were focusing on the issues of the Southwestern states or New York City or perhaps Miami or Dade County, now it is an issue that we as a community, as a society in general, have to seriously address and the data system in place is now really providing us the kind of information that we need for meaningful planning, for meaningful evaluational programs, for even policy formulation.

There is more data recommending that. The other issue in that process of dealing with the challenges is the growing elderly population, not only Latino but minority elderly population and we still, in terms of data and research, we know very little about the needs of the elderly population because they tend to be generally a younger population so we tend to collect or focus more of our attention and resources in addressing or documenting those needs so the younger population and now that we are, you know, confronted with a large increase, at least by the year 2025, of minority, we still have a lot of way to go to be able to do that well.

Another issue is that the data system and data collection strategy in terms of data collection and data collection strategy is that it does not capture diversity among minorities. This was also alluded by Dr. Lumpkin earlier, and it is obviously particularly true among Hispanic Latinos, particularly when you look at the Hispanic population, we are talking about a group that comes from more than 20 countries. It is again the American society who wants to perceive us as a homogeneous society but one of the fastest growing groups are people that come in from Central and South America. And we just don't know anything about it.

Recently I was asked by the National Cancer Institute to write a chapter about the cancer issues and needs of women of Central and South America. I had to go back to the Pan American Health Organization and find out what are their needs in Central and South American countries to be able to predict what is going to be the trend in terms of cancer rate for those particular populations so again it is a very serious problem that we have.

Some effort has been made in improving the data system but again, even when you look at the HANES III, the HANES III at the national level included only Mexican Americans. It did not include Puerto Rican, it did not include Cuban and other groups that are growing very, very rapidly among this particular population as some of the data here indicates.

And then there was a tremendous amount of diversity. I am not going to go into details now about levels of acculturation but by citizen status, by language use, by recency, you know, length of time in the community, et cetera, et cetera, and the kinds of data we need, at least at the local levels to be able to assess what are the needs of the target population in question that we are serving. If they are recently an arrival, we need to engage in different processes and some of the things as I research, I have constantly to be doing primary care data, primary data collection because at the local level, I just don't have the kind of information needed, not even to support application to grants where you have to clearly delineate the needs of the particular target population because of the diversity, because of the data system, not having the kinds of information we need to document those and how different factors such as immigration push and pull factor impact also the health status of many of the population.

And then in terms of socioeconomic information, most of the data systems doesn't really provide the kind of information that would allow us to really have a better understanding of the needs of poor communities and even when we try in our own studies to include data on income, for example, we have given up on the income data. First of all, the data is so poorly provided by the participants of any survey. Lately what we are doing more heavily is trying to come up with other indicators, what are the percentage of people who participate in Medicaid programs, in WIC programs, in food supplementary, things that would indicate the general socioeconomic status of those populations because the data on income is very limited. It is not complete; it is not accurate and we just cannot hardly do very much with that data overall when we collect them.

This is a very serious problem and now that we are dealing with the social disparity which is ow the new movement that is emerging in terms of providing services or assisting and addressing the needs of minorities, we really need better socioeconomic and demographic characteristics to be able to understand and plan.

Obviously, this particular chart provides a number of factors for poverty rate among Latinos that again varies by the Latino subpopulation with the Puerto Rican experience being close to the African American experience now in terms of socioeconomic and demographic characteristics but also in terms of health characteristics, the health profile of Puerto Ricans is closer to the health profile of the African American in this country, has to do with the whole history of oppression, the whole history of racial and social discrimination.

And by a mental factor, again, we need a lot more information that could help us document the environmental factor that impacts the health needs of Latinos as a whole and the Latino community in general. Some of the risk factors here, children they have elevated lead levels, family lives in neighborhood near toxic waste dump. We did a study recently, not recently, two or three years ago in an island community where the community was concerned about a number of symptoms and chronic illnesses that were associated with the refinery industry in those communities and we came there to try to document through a household survey some of the environmental factors. And actually as a result of that we were able to use the data, organize and mobilize the community into a coalition that later on lead to a lawsuit and now there are a series of other things that are happening possibly as a result of some of those efforts.

Another concern that I have is the data system consistently excludes Puerto Rico and as a Puerto Rican I am very much concerned because the health status of Puerto Ricans in the island of Puerto Rico is close to the third world countries in terms of high infant mortality, high diabetes prevalence, asthma, HIV, you name it, violence, drug addiction, and even in Puerto Rico because of a lack of limited resource available, their infrastructure is very limited to document the need. When we tried to do a comparative study between the Puerto Ricans in Puerto Rico and the Puerto Rican in the mainland, we find a tremendous amount of gap in trying to do justice to that.

A clear sample here when you look at prevalence of diabetes among persons 18 years of age based on the behavior risk factor from CDC, the island of Puerto Rico had the highest prevalence of diabetes of type two when you look at regional data. However, those kinds of transit patterns get lost if you don't have those kind of information that could help you better understand what is going on.

The data system, again another problem is it doesn't allow us to examine the process of acculturation and how we affect the health of Latinos. Most of the studies, you look in here, some data on maternal and child health indicates that in terms of birth to a married woman, for example, is much higher if they are born in the U.S. versus born in the country of origin. Some of the Latino researchers argue that acculturating into the US lifestyle is danger to your health because you tend to get worse, your health is going to get worse in every single indicator. Here you have data in terms of teen birth. Again, very high among those born in the United States versus those born in the country of origin.

So we always have to try to figure out ways to manipulate the data to give them kinds of information that would help us understand what is really going on and come up with the kinds of community intervention to address the problem and again other studies have documented the same effect of acculturation in a number of other areas now in maternal and child health but in areas of cancer, areas that has to do with the lifestyle like obesity, higher smoking rate, alcohol, et cetera.

We need more and better data on structure and condition impacting health. Type and location of employment, particularly with the migrant. What kinds of pesticide exposures that are involved. There are all kinds of things that we just don't have ways to collect the information properly and be able to develop some kind of rational processes to impact public policy in those kinds of areas.

We need to improve the collection strategy. Most of the health data systems, as I mentioned, are poorly equipped to provide information on the health status of Hispanic Latinos. There is insufficient identifiers for the different subgroups, some of the data incomplete. Some of the data from managed care systems do not collect data on demographic and socioeconomic characteristic that I said it was critical in terms of addressing the needs of the Latino population and although the proposal for infrastructure that will be discussed this afternoon may provide some relief, we have to obviously put in place safeguards in terms of confronting challenging issues to make sure that the kinds of strictures that is under consideration would not really cause more harm to our community.

More needs to improve data collection, starting, for example, we need to monitor trends over time at the national, state and local level. There is a growing socioeconomic inequity and worsening of health among Latinos. The data is critical to identify points of intervention. We need to monitor and enforce Civil Rights Act. There is a lot of discrepancy between self-identification and observer identification and you have that particularly a problem with mortality data where funeral directors who, when they fill out this form, usually engage in a tremendous undercount because they rely more on the observation rather than trying to gather information from a family member on the ethnicity of a person who is, who died.

Changes in preferences, I mean, Latinos may not be debating with the whole issue of Hispanic versus Latino. And what we have adopted based on the Surgeon General Antonio Novello in 1993 was to use both terms to refer to the same population. So there may be in the next year or two changes in which term we are going to use and how we want to label ourselves. It may have an implication in terms of data systems and comparative kinds of studies.

Again, the whole issue of having separate questions on race and ethnicity is critical. We have found that we need to have a question on ethnicity first if we want to gather some information on Latinos. For example, some of the information available indicates that there is a non-response rate that is very high on Latinos. It could be as high as 36 percent according to some of the national content data and 40 percent of Latinos tend to select the other race categories when the race question is only asked in most of the national and local surveys.

So we need to correct that so we could be able to find out better how to analyze that data so when you have information under the other race category, it really doesn't really tell us much about what is going on or do we know again the 40 percent of those under the other category tend to be Hispanic so there has to be a better way to collect that information to minimize those kinds of inconsistency.

Misclassification of race, again, you know, leads to the underestimation of death rate. Issues of comparing race like again with the census undercount which is greater for racial and ethnic minority. We need to take that into consideration when we are using the census data.

I know that you are going to be talking this afternoon about the National Health Information structure. I truly support that particular effort, particularly because I am aware of the Cornerstone system in Illinois which is a wonderful data system and we use it particularly in our studies on diabetes because it has a diabetes module and so I saw this infrastructure as even a much larger expanded vision coming from the Cornerstone data system. I don't know if you agree with me, but that is how I was looking at that when I read the report.

Again, the reports that were provided addresses security, confidentiality, standard protocols and data elements. However, we should be careful how much data falls into the hands of big insurance and managed care businesses, especially now that we have moved into the new genetic era. These organizations which have the capital to build the infrastructure around their, not necessarily their public health, we are going to find a lot of challenges that we need to have some clear safeguard to address them.

The report indicates that the new infrastructure would bring down minority disparity. This is not likely for several reasons. This population are characterized by low technical literacy level, lack of insurance coverage, language barrier, lack of telephone survey and in some population, rapidly shifting residential and employment mobility.

Also, you have the issue of the undocumented non-resident worker which would clearly be left out of this infrastructure system that is being proposed and for which we need to figure out ways to make sure that they get included in whatever system that would be implemented.

Also the National Health System Infrastructure simply will not be able to purchase and maintain information, access advice like cell phone, computer electronic and this is particularly the truth of the low public health system that doesn't have the resources and people who then would be able to access their information.

Building a public health community component will be extremely difficult under this new structure as well. The state and local health departments are barely able to keep up with basic advances and most of them lack the personal capacity to implement use and analyze what they have. At the community level we encountered more barriers, technical and financial. Most legislatures are likely to lay out funding for this improvement.

Other recommendation is that together with the data improvement, we have to figure out a better way of recommending access to health care, even when you look at the lack of health insurance coverage, the percentage varies depending on the data sets and we have to figure out a way that you would have more consistent information not in terms of health insurance but in terms of percentage of people with a regular source of care or experiencing any other type of inconveniences in obtaining care and here is just some data that I provided on lack of health insurance which you would have in your handout that illustrates some of the points I am trying to make.

So therefore there is more funding that needs to be provided to public health activities overall and to public health data systems. Again, most of the funding in this country, as many of you know, is primarily aimed at medical care when 70 percent or most of the premature mortality are due primarily to environmental and behavior risk factors. So we need to mobilize effectively to make sure there is more resources into public health.

We need more stronger government and private sector commitment at all levels to improve data and now that we are dealing with health disparity, I mean, some of the argument is that we need to work beyond the Department of Health and Human Services but to have all the key departments that is going to be instrumental in collaborating with data systems that would help us to understand the impact of other elements like education, housing, employment, et cetera.

And then we need better implementation of the impact of race and racism. Most of the minority investigators are really looking at the impact of race and racism on the health of minorities. In the case of Latinos, this particular study from the Alcasor(?) Family Foundation Survey are already starting to document the fact that Latinos are aware of the kinds of racism and unfair treatment that they experience as a result of their ethnicity so we need to plug that into some kind of systematic way so we can have a better understanding of the impact of race and not only race but sexism and other aspects that unfortunately of our integrated was part of the health care system.

The data system, and perhaps the infrastructure that is being suggested could help us with the improvement of the quality of care. Some of the studies that we have done in the Latino Research Center clearly indicate that the physicians and other providers serving our communities are not really familiarized with clinical guidelines on the management only of diabetes or the management of asthma. We need to provide more information consistently so that we could be able to begin addressing those kinds of the fact that they are not getting the optimal treatment and that could be one of the major factors for why their health is not improving at the level that is expected. This particular slide just provides some of the data in terms of some of the studies, asthma treatment variation that clearly documents how African Americans and Latinos base on the series of studies that we did accessing patients in hospital emergency rooms in the Chicago area. The people who had a regular source of care were ending up in the emergency room and when we started looking at the kinds of quality indicators for asthma control and management, we realized that they were not getting the proper medication. They were not getting the proper education.

Again, now that everybody is talking about the health disparity and there has been a number of areas that have been defined, we truly believe that even to address some of the disparity and one of the examples that I provide here is the Rich Project, funded by the Centers, they are the first ones who are already moving the trend into looking at how can we change social norms, how can we be able to produce changing targeting not only the health system for looking at the Health and Human Services overall and how to be able to have those kinds of interventions in producing community social norms of changes. How we need different kinds of data and in the case of the Reach 2010, they are encouraging and providing funding for us to engage in community need assessment because the kinds of systems available will not give us the information that we need if we want to have a more comprehensive systemic changes at that level.

Here again we need to increase the amount and quality of research on Latino. Many of you have heard from me that I am very critical about how research in this country is done on minorities. Research is usually done by people who are not minorities on minorities, people who have little cultural understanding, sensitivity who even had a middle class mentality and as a result the kinds of research that is done in our community are research that reinforce that there is stereotypes about the health of minorities and as a result reinforce the whole system of I believe of inequality in this country because it stresses the cultural deficit model in a victim-blaming etiology and the research process has included methods of observation, criteria for evaluating past impurity that intentionally or unintentionally have been designed to justify pre-conceived ideas and stereotypes of people of color and consequently has reinforced in our society the traditional patterns of power status and privilege.

That is one of the reasons that I am very heavily committed as a minority investigator to train new minority in the area of research because we know how critical is research for public policy and the research that is being done in our community doesn't really help us not only to solve the immediate problem but even worse, it really reinforces the whole system of inequality.

And obviously, not that the report even mentioned systems like the children's health insurance and how that is critical to understand where we are in terms of providing services to our children but we need more and better dat, not only on the children's health insurance that has from my perspective serious limitations but also on welfare reform and immigration reform, affirmative action, child care legislation, a series of other initiatives, public policy initiatives that is going to impact the kinds of data that we need to collect and monitor and evaluate in terms of intervention and they also open up a whole series of other areas that we need to seriously consider in this process.

And then in conclusion to improve data and collection strategies systems and to better document the health needs of minorities and Latinos specifically, we will require a comprehensive and coordinated approach working with Health and Human Services organizations and with commitment from different levels of government and the private sector. We commend again the National Center for Vital and Health Statistics for their effort. It is, I believe, long overdue. They should be commended for this vision, for putting the interim report together so concisely.

However, as well as a conceptualized system, it will not remedy some of the main issues of the public health sector such as the lack of system in some areas or the fact that they confront a serious problem because of socioeconomic, labor market, legal issues as well as the lack of universal access to health care.

While privacy is important, we should expect to waste an ordinary amount of time selling a national information system to different civic liberties sectors. Data quality also will continue to be an issue. For example, this classification as I mentioned earlier of ethnicity, race, is a problem although social systems will eventually pick up those areas however burdensome system, incompetent or heritage like in the case of data entry with personnel could perpetrate error.

And finally in improving the data collection system, we need to learn from the challenges that the Census 2000 is experiencing regarding the response rate that was alluded earlier. People just didn't, you know, the experience we have been observing based on the media and other stories is that people just couldn't deal with the long forms that were sent to them or they didn't understand the questions or felt intimidated or felt it was invasion of privacy. They felt they were not going to have time or patience to respond to the many questions and they thought of their income, et cetera, and other information is not anybody's business.

So we have to learn from those kinds of experiences that is happening currently to also take those in consideration as we try to improve data collection overall and data systems particularly pertaining the minority populations.

Thank you.

[Applause]

DR. LUMPKIN: Thank you. Welcome. Can you hear me?

MS. LAFATA: Barely.

DR. LUMPKIN: Through the wonders of modern technology, we have you, with your slides on the screen.

Agenda Item: Jennifer Lafata, Henry Ford Health Systems

MS. LAFATA: I talked a couple of weeks ago to a group of Korean dissidents who were visiting here and after every line someone had to translate. The Koreans were a group, at least I could see some faces. This time I have nothing for feedback so please, if people want to stop and ask for clarification, don' FACE="Courier New">t raise your hand but yell I guess.

What I was asked to talk about, and I am sorry I didn' FACE="Courier New">t get to hear the earlier people, the trends and gaps in shaping the vision, if you will indulge me just a few minutes and if you can go to the first slide, what I thought I would do is tell you a little about the perspective from where I come. I have about three slides quickly here just to tell you about the Henry Ford Health System.

This first one should have a picture of our flagship institution which is the Henry Ford Hospital. We are an integrated delivery system that has a trifoly mission. That is, first and that is the large wheel of our bicycle which is patient care, but then we also do research and training in education here. As I said, the flagship is the Henry Ford Hospital. It is a 900-plus bed tertiary teaching facility in downtown Detroit. We also have the Henry Ford medical group which is a 900-member salaried medical group and Health Alliance Plan which is somewhere between a half, I think they are at about 572,000 members now, mixed model HMO and then a whole series of other organizations, other hospitals as well as medical groups that are affiliated with us.

The next slide shows the Henry Ford patient population. Our core group is Health Alliance Plan which, as I said, it is about 572,000 members and then the Henry Ford medical group which provides care to about a third of the patients in the Health Alliance Plan but also to patients through a variety of different insurance mechanisms, bringing our total lives to about 862,000 that we touch each year, about 20 percent of the Southeastern Michigan market.

So on the next slide, here we start getting into information on data. Where I sit, life looks pretty good from the data perspective. The medical group maintains some fairly comprehensive data bases on every patient that sees a Henry Ford medical group physician, gets assigned a unique ID number and medical record number which then is used to link all of their utilization within the medical group and if they are a HAT member, in the HMO as well.

There is a panel management file that links our patients to primary care clinicians, has a couple of registries in it, disease registries. There are administrative encounter data through the medical group so that every time a patient is seen by a physician, we know what was administered to them and unlike in some of the other staff model HMAS which people may be familiar with where capture rate on specific procedures is less than ideal, here because the medical group often sees a large fee for service population, at least in theory we are capturing at the procedure level, at the billable unit level, everything that is going on.

We have an automated clinical management information system that has information on lab tests ordered, who ordered them, for what patients and when, data as well as the test results. That, as I said, is all electronic, and then we have a cancer registry that is linked and is actually used to build the SEER which we are a part of here.

And then on the HMO side, we have membership files that cover all of the membership and we have claims data. That data is more or less complete, depending upon who is bearing the risk so it is some of our contract. If a medical group is fully capitated, we might not have as detailed information but for others we would have complete information including prescription drugs.

The next slide is the final one here which just says what that means in terms of our capabilities within our health system. We have complete data back to 1994 for some things like prescription drug use and outpatient encounters with a medical group. It actually goes back as far as 1990 and is fairly accurate that far back.

As I said, all data can be linked using unique identifiers so we can link patients, physicians and clinics so you can know not only who is ordering care but in what setting and then data can be aggregated, data at the patient, physician, clinic. We have regions here that are administrative units that make little sense outside of us but within here for tracking what is going on, the region or the health system level.

And then finally, our data is updated worst case scenario monthly. Some things are updated nightly and there is really no more than a three month delay when things become available. So it is a fairly rich environment in which we live here in terms of data systems and with that in mind, and I was sort of told the floor was wide open for what I could talk about with the report, so the next slide is a proposed 11th and 12th principle and these were to be added to, I am just slipping in this report, I can't remember what page the principles were on, fairly early on, page 4 and 5 of the report, I thought an 11th principle that might be considered is that data must be available in a timely manner so that it can be useful and relevant to decision making on health and then the 12th principle is that the accuracy of the information compiled must be continually addressed.

In some of the work we do here, we try to work out when it is feasible to be using our automated data systems and when we would be better off to be in the medical record or somewhere else.

Then the rest of my comments are really centered around the current and emerging health issues that were outlined in the report as well as the health information needs associated with them so there should be a slide up now that says socioeconomic, demographic and environmental factors. One of the things I thought might be worth adding to the list is some information about the knowledge of the burden of illness to patients, their families and support networks so that we could understand better the relationship of health to employment and under-employment to the receipt and provision of care, how the burden of illness changes with health status and over time and by population subgroups. This was sort of getting at the notion of where it is health, both the health of ourselves and our families fit into this busy life, that more and more of us are leading in this country and as we try and push things into outpatient studies so that more care is being provided by our networks, our support systems, what is the impact there.

The next slide is the health of populations. Here I know there was some mention of comorbidity so what I am really doing is emphasizing the importance of that which is that we really need to have information on the presence of multiple conditions. I mean, we struggle with that here in how to do disease management. If we have a patient with heart failure who also has diabetes, should they be in a heart failure program or should they be in a diabetes program or do they need to be in both and if they are in both, how do we coordinate care. So I think we need additional knowledge on the interaction of multiple conditions and the role that the environment plays in the manifestation of health among multiple conditions.

The next slide should say health care, health services delivery and health care seeking. One of the trends that I thought could be considered is this increasing expectation and I would argue that it is an expectation on the part of both providers and patients for patient input in treatment decisions and there are a whole series of questions there that I believe are going to become more and more important. Things like what are patient preferences regarding such input. One that is not listed on the slide would be what is the impact of this input on health.

Third, when given the option, how to actually make a decision. I mean, do they go get a second opinion from another provider? Do they turn to their aunt who is a provider? Do they do things on their own? And then what are the patient's different capabilities of making decisions and what decisions are, at least what could be labeled informed decisions being made?

The next slide should say health care, health services delivery and health care seeking. This is where, there was a note in the report about the importance of understanding the population of health and relative investments in primary and specialty care. While I think that is important at a macro level, I think there is a whole other level of questions that don' FACE="Courier New">t get addressed at the macro level that I would argue are perhaps more important and that is the question of how to structure care delivery processes to insure the provision of appropriate care regardless of the provider type or even regardless of the setting. I think the reality is that primary care and specialty care are both here to stay as are fee for service and capitated care. What we need to work out is how do we build delivery processes to maximize the health within those studies.

Is the next slide on risk assessment? I think I changed the order here. This one is sort of, I don't know quite where to put this one but it falls under the health care, health services delivery and health care seeking thought which is that one of the pieces of information we are going to need is information to allow risk and severity assessments to allow for comparisons of the effectiveness of different interventions.

So scientific research. I think here I would actually focus on what scientific evidence has been translated into practice, how do we know what evidence is in place and what is still sitting on the shelf collecting dust and then what are the effective means of disseminating and implementing processes of getting research findings into practice, both in terms of alternative environments and settings and alterative populations.

And then the public policy and advocacy topic. This is where I think because there are some specific, some vocal groups, some interest groups that have been very vocal lately on their agenda items, it would behoove us to understand the priorities and preferences of the general population as well. And then second, and I am not sure that this fits under here but I couldn't think of a better place to put it, but one of the things I think is useful for us to understand is what the influences of reporting mechanisms and report cards, things like HEDIS that really drives some of the priorities that we see in the area of health these days and understanding not only what the impact of these priorities on themselves but on what gets missed out so the question becomes are people studying for the test or are they really tainting the underlying processes? I guess this is just a warning to not only do the things that are today's hot topics but to make sure that we measure and have information on things that are reflective of the entire spectrum of health.

In terms of information technology, this is just a plug again for the 11th principle that we need ways to assess the accuracy for data for different applications. Those applications can be those that were intended originally as well as unintended and then highlighting the importance of the notion of linkages which was already mentioned in the report.

I have a conclusion slide because I thought I should have a conclusion slide but I have to admit that I had a hard time coming up with what it should be. I really think the key principles here are insuring that we have accurate information at the right time which means more quickly than we have historically seen things available for public use and that things are collected after carefully thinking through both the macro and the micro policy issues that are likely to be addressed.

DR. LUMPKIN: Thank you.

[Applause.]

DR. LUMPKIN: You did a wonderful job considering that you were not here to see everybody grimacing.

MS. LAFATA: Not a clue now.

DR. LUMPKIN: You complete this panel, and I thought maybe we would ask for questions that may be directed to you first. Are you at the airport or back home?

MS. LAFATA: Oh, no, I am back at the office.

DR. LUMPKIN: Okay, and then if you want you can hang on as long as you want. Are there any questions?

DR. STARFIELD: I am Barbara Starfield.

DR. LUMPKIN: Richard and Barbara, you may want to introduce yourself just for the recording so they have your voices.

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

DR. HARDING: And I am Richard Harding from the University of South Carolina School of Medicine and also a member of the committee.

DR. STARFIELD: I want to thank you for your presentation, very enlightening. You have a lot of experience with data. In one of your slides you mentioned that your data are aggregatable to various levels. I wonder if you could tell us first of all what you mean by regional systems and second of all, and more important, what data do you strip off as you use larger aggregations for purposes of privacy and confidentiality if any.

MS. LAFATA: I am sorry, I really can't hear.

DR. STARFIELD: Let's try again. How are we doing now?

MS. LAFATA: That's great, thank you.

DR. STARFIELD: Okay. I appreciate your presentation. It was very enlightening. You have a lot of experience with data. In one of your slides you talked about aggregating to various levels - patient, physician, group, region and health system. First of all, I wonder if you could explain a little more what you mean by region and health systems. Second and more important, what data do you find you need to strip as you aggregate to larger and larger levels for purposes of privacy and confidentiality if necessary.

MS. LAFATA: There are a couple of ways we define health systems. The region really refers within the Henry Ford Medical Group which is what I would say is one of the ways we aggregate the health system. At the health system level, there are two main groups that we can aggregate to - the health alliance plan and the Henry Ford Medical Group. If you are taking a purist perspective of our health system, is not really the intent. Neither one alone represents the entire health system.

The group that overlaps there, the Henry Ford Medical Group patients who have our HMO insurance, Health Alliance Plan, that is the population we use most often for research purposes because that is the group that we have the most complete picture of their health care utilization because we know all the care that the medical group delivers to them and any reimbursed care they receive under their HMO coverage that was not delivered by the medical group.

So when I say health system, that is about where we get to with any level of detailed information. We can do other things in other places so we can do things at the hospital, some of our other hospitals that probably we don' FACE="Courier New">t have an automated data system for but it is the level because it exists there.

Then, with that in mind the region is really within our medical group there are what used to be five administrative regions. Over the last couple of years they have dwindled to three so we now have three larger administrative regions. They are geographically based regions of primary care clinics which have for reporting purposes medical directors and various administrative counterparts.

Did that answer your question?

DR. LUMPKIN: And when you aggregate the data?

DR. LUMPKIN: Oh, the identifiers. It depends for what purpose we are doing things because we are all in-house or at least I am in-house so when I am doing things. We do, for research purposes, we don't include Social Security number information, patient name or contacting information in our analytical files. We go to a unique WID but we haven' FACE="Courier New">t stripped additional information off. I am trying to think what other research things we have done. You know, for some interventional studies do here which is a little different than what the purpose of this conference is, we clearly have to maintain some contact information. But all the data stays in-house behind our firewall. If it goes outside of our firewall, then we definitely take the contact and identifying information off.

DR. STARFIELD: What do they take off?

MS. LAFATA: I guess sometimes we convert date of birth before we send it out.

DR. LUMPKIN: So the, any other identifiers you strip off? You contact information, you mentioned Social Security number.

MS. LAFATA: Name, we don't strip out our unique ID number either, the medical record number that patients are assigned here.

DR. LUMPKIN: Thank you. Any other questions? We are going to leave you on line as long as you try to hear. We are kind of in a huge ballroom and you are sitting right in the middle and we are hoping the amplification will reach you.

MS. LAFATA: Okay, thank you.

DR. NEWACHECK: I want to thank the panel for an excellent series of presentations. These are very helpful presentations. I have a question for Patricia Merryweather. In your presentation, a couple of points. You stressed the importance of building a level of trust among the participants in developing a coordinated data system and one of the problems at the federal level in integrating at least federal statistical systems is there is often turf issues that come up to block that or to at least slow down the coordination effort. But it sounds like you have had a little bit more success in Illinois and I wonder if that is true and if so, are there any lessons that might come out of the experience in this state?

MS. MERRYWEATHER: I think it is especially challenging when you are dealing with private organizations and public organizations and so what we have decided to do is the association still services its hospitals in terms of hospital-specific comparative information but at the state level we have built a community health information base and that is where it is targeted towards the community and the information is more health status information as well as disease specific. So I think we have gotten over that, and we actually, I think it is about five or six years ago we kicked off a series, a televideo conference where Dr. Lumpkin and our CEO, Ken Robbins, laid out to all hospital executives and public health administrators that even working together we cannot resolve all the health care issues. So let's find common ground and work together on areas that we know together we can effectively make some changes but then where we disagree or where there is issues like that, to again work through those issues over time but to find common ground.

Again, when you look at people that get into health care and I say this all the time, you can't be in health care for the money. At least, when you are working in a hospital clinical setting, public health, you are not in it for the money. You are in it for the common good. So if we put and focus on those issues, I think that is where you can develop trust and providing feedback, getting information back to people in a timely manner makes them more accepting and more prone to participate in those future initiatives so I think that is where it needs to begin and I agree, I think there are turf issues. I know we see at a national level when it comes to quality of care and measurement reporting and it is frustrating for us because again, I think if we can get beyond that and try and look at what we can accomplish once we have that information and that is where our energy should be.

DR. LUMPKIN: I just have a couple of quick questions. You mentioned that you spent a little time talking about the burden of data collection. One of the pieces that will be part of the HIPA legislation of course will be the setting up the mechanism for electronic data interchange. If the health statistics system is set up in such a way to receive data like through EDI, do you see that this added capability to hospitals that, say, try to come in compliance and do electronic transactions with their payers will provide a vehicle for us to get electronic transactions for health statistics?

MS. MERRYWEATHER: I have some mixed sentiments on that. Probably about two years ago I would have said yes. As it seems to be evolving right now, is that many health care providers are finding themselves in a position that they will have to rely on outside sources to get this done within two years and so I think what they are going to be doing is using their existing systems, sending out the information to another system and having that system turn around the data for the payer information.

And, again, I think part of it is I know hospitals are really concerned about the cost of these information systems. We have found recently that many providers cannot get contracts signed with IT companies in which you build in that if you move to HIPA that they will be HIPA compliant. Usually it was anytime there is federal guidelines or changes, it has always been a cost of doing business and part of the regular maintenance fee. Now they are saying no, no, no. That will be set aside differently.

We are also finding that these transaction organizations that hospitals have used for years in which you send out your information and data and they turn it around and send it to different vendors are also increasing their fees so again, I think it is going to be a little bit of turmoil for a couple of years until there is a process to get everything in place to send that information and get it established.

I also think one of the things we are going to struggle with is the quality of the data because right now if I send, as a hospital, if I send information to Medicare or Medicaid, I know that they usually put it through some strict logical edit and error checks. However, if I send it to commercial payers, I oftentimes know that there is no logical or edit checks and again, they can be 40 percent, at least in Illinois, about 40 percent of the inpatient business does not go through that process so there still needs to be that editing that goes on so it does not, having the electronic means doesn' FACE="Courier New">t necessarily result in quality data. I think there will be some gaps and some holes but again, over time I think it will lead that way.

DR. LUMPKIN: Let me see if I can understand what you said. If we are envisioning in Illinois hospitals that they will be sending it to a clearinghouse of some sort and to a mediary that will then subsequently send out the HIPA compatible message transaction, are they sending that electronically by and large or do you think that will be sent on paper?

MS. MERRYWEATHER: I think it will be sent probably the way it is right now which is the hodge-podge, paper, electronic, disks, tapes. If they have to continue going through clearinghouses.

DR. LUMPKIN: So would you consider this to be a reasonable recommendation or thought that if we are looking at health statistics, that the creation of a health statistic clearinghouse might facilitate data collection so that they would send it in their normal fashion but it would go to an intermediary or trusted third party that would then put it into a standardized messaging format. Obviously the issue has to be addressed of who would pay for it.

MS. MERRYWEATHER: Right. I think, again, everyone would love to have it all paid for and again the participation level would be there but I think now the hurdle is really getting that information, finding the resources to deliver that information and again I think it is worth thinking of existing data. I think when we move to new data, it requires additional functions and features that may not be available to hospital providers right now.

I know we also, we are struggling with some of the issues regarding, say, for example, race and ethnicity. If that is part of the billing format with HCFA, that is not something that is collected right now by hospitals in Illinois along with probably about 20 other states so that means there will be changes in your admission patterns and how you, in terms of recording that information, there is administrative changes that go along with any type of information changes as well.

DR. LUMPKIN: And one last follow-up question to that. To your best guess, to what extent do you believe that hospitals in this state have the ability of sending an electronic bill versus sending paper to a third party or something? Rough ball park, just so we know. Quarters? Or thirds?

MS. MERRYWEATHER: In the 837 format? Probably about 10 percent.

DR. LUMPKIN: Electronically?

MS. MERRYWEATHER: Yes, in the 837 format. In the Medicare flat file format, it is a little bit different. You have most of the providers in that position. Smaller rural hospitals know they usually use intermediaries. But I think a flat file is different than the 837.

DR. LUMPKIN: So you would say 10 percent for the 837. What percent for flat files?

MS. MERRYWEATHER: Just about everyone who is using Medicare or Medicaid is getting it there some way.

DR. LUMPKIN: So, 95 plus?

MS. MERRYWEATHER: Oh, yes. And again I think part of it is they may be sending to an intermediary but it is being transferred into that format and sent off.

DR. LUMPKIN: I would like to thank the panel and we will move on. We got started late so I am going to beg the indulgence of the group that we not take a break. If someone needs to take a break they can sort of stagger. Not stagger out but adjusted breaks. Thank you very much. The next panel on principles. Dick, did I see you? Dick Warnecke.

Okay, I thought I had seen him earlier. So why don't we start with Alfred?

Agenda Item: Principles for the 21st Century Vision - Alfred G. Zangri, M.P.H., National Association for Public Health Statistics and Information Systems

MR. ZANGRI: Thank you. First I would like to apologize. I spent 14 hours yesterday on a plane and an umber of those hours were sitting on the tarmac so I am a little bit tired this morning and I have a three hour time difference so I hope I can survive and get through this in a reasonable manner.

For the record, my name is Al Zangri. I am speaking to you today on behalf of the National Association for Public Health Statistics and Information Systems. NAPHSIS represents the 57 states and territories and a few independent registration areas such as New York City and Washington, D.C.

The 82 members of NAPHSIS include directors of state centers for health statistics, registrars of vital statistics and information systems, managers and health arena. I would like to thank the National Committee on Vital and Health Statistics as well as Dr. Lumpkin, Dr. Friedman and Dr. Sondik for this opportunity to discuss the interim report on 21st century health statistics. In the short time that this report has been available it has been widely circulated to our membership and while it was still under review I would like to give you the association's initial reactions to the report.

In addition, I would like to formally extend NAPHSIS's offer to work as closely with the committee and staff to turn this into an operational concept as you would like us to work. As quick background on myself, I am also, so that you know where I am coming from, I am also director of the state Center for Health Statistics in Alaska and I run the Bureau of Vital Statistics up there.

Let me start by telling you this draft is very good. It is all-encompassing and deals with a myriad and a variety of issues surrounding all aspects of health statistics.

One of its strengths is that it brings together most of the relevant issues in one high level federal document. It is, I am sure you are aware, very general and as such is probably too motherhood and apple pie to be practical and saleable. However, it is an excellent jumping off point for developing an operational plan to achieve a vision.

I have just a few general comments on the document and then a few observations about where we can go from here.

Health care delivery in the US private sector is mostly based on profit motivation. Whereas public health, Medicaid, Medicare and other government-supported health intervention and financing mechanisms are perceived to focus on disparate benefits populations. As a too-long silent partner, state public health agencies deal with all populations in many aspects of everyday life. Attempting to build a new, unified, integrated health statistics system could require a commensurate change in how health care in the United States is delivered and paid for to be able to approach the visions ideals. This may be unlikely so some emphasis needs to be placed on utilizing and perhaps modifying existing and emerging health data systems.

Some thought needs to be given to the role existing CDC and joint CDC and state activities such as the national electronic disease surveillance system, the common information for public health electronic reporting, behavioral risk factor surveillance system, pregnancy risk assessment honoring system, CDC approach common data elements or CDC approved Internet standards will play in the 21st century health statistic vision.

Just like politics, all public health and health care can be characterized as local. If you want to pique people's interest, tell them that the suicide rate for teens in their state is 129 per 100,000. If you want to spur people to action, tell them that the suicide rate for teens in their communities is 280 per 100,000 in a community of 2,200. Or that while there have been 50 cases of TB converters in their state, so far this year, 27 of those cases have been found in their community in the last six weeks.

The point is, people get intellectually interested in large area numbers. They get concerned and are prepared to take action when they perceive a personal threat. The vision makes a point that data and information must be available at the lowest possible geopolitical level so that policy decision makers can make and use that information to take action.

However, for the vast majority of our counties and communities this immediately raises both small number analytical issues and confidentiality problems.

On the other hand, I don't really believe that we have to spend a lot of time convincing people to take action to make the information available at the local level. Communities are demanding that information today and in many cases they are, in fact, getting it. States and the federal government are finding ways to make that information available and that trend will continue.

We would be hard pressed to find ways to stop its release. So what should we be doing?

We should be concentrating on ways to deal with small numbers in confidentiality, whether that involved cell size suppression, multi-year averaging, smoothing techniques, education or other methods that may be developed, the vision should perhaps focus on developing processes and methods for dealing with these issues.

The key elements of the vision are clearly the 10 principles that have emerged from the discussions to date. While one might quibble with the specific wording of a few of the principles, it seems clear that the principles are both sound and essential. There are a couple of points that should be noted.

Principle one on privacy, security and so forth appears to equate the notions of research and public health monitoring. This is a serious problem for state and local public health agencies. These agencies do very little actual research and when they do do research, they go through the normal design and IRB approval process.

However, assurance of the public's health is one of the few government activities that is specifically identified in state constitutions and assurance requires monitoring activities that require data and information but do not constitute research. It would be extremely difficult if not impossible to just charge the responsibility to protect the public's health if data collection for monitoring even remotely suggested the need for informed consent.

I cannot agree more with the ideas presented in principle five regarding compatible standards. I would, however, go a bit further and suggest that standards should be set in concert with all of our partners in a forum that considers all needs and issues. This forum already exists for the data we are dealing with in the standard setting bodies of X-12 for administrative data and HL-7 for non-administrative data.

I would suggest that standards should be set in these bodies. We should all have regular membership and representation at the deliberations.

Unitary data collection for multiple purposes, principle six, is a laudable and essential goal. However, the practical application of this principle raises some extremely complex issues and, in some cases, contentious issues. Two of the most easily understandable and straightforward of these issues involve matching criteria and field ownership rules. For example, if you are inputting information on a newborn screens specimen from a form with the name Judy Smith, how do you determine whether to update the electronic record for Judy M. Smith, Judith M. smith, Judith Smith, Judy A. Smith or perhaps Judy Smith of Bethesda or Judy Smith of Hyattsville? It is possible that the lab form in the hospital may have the medical record number or a patient ID number so that the match can proceed on the basis of that number.

However, when Judy's personal physician connects to the hospital from her office to report information on her patient, she will not have access to the same record number given by the hospital unless she is in the same HMO or medical group. So we must define matching criteria to insure that the record updated for each authorized source is actually the correct record.

Let's go a step further down this road and look into the ownership question. The issue in the ownership question is who has the right to update each field on a given record. Each field in a unitary entry system must have a define set of authorities, including the right to update. In the Judy Smith example, do we allow the name to be changed or updated by the lab or medical records or intake or the ward or who?

We might try to solve the name problem with an alias field or a set of alias fields. While this is a potentially attractive solution, it does further complicate the matching machine. However, what about the address fields? Do we allow medical records or intake or billing or the doctor' FACE="Courier New">s office on a patient visit or whoever to update the address field? These questions have much more of an academic interest since the entry in the address fields will significantly impact the geographical analysis of our health measures and therefore have potential policy and remediation implications.

Research, this is a good group to be saying this to, research is generally not a primary motivator to implement or support national, state or local data systems. Billing, administrative program management and possibly evaluation and assessment are. It will only be accurate and robust if the data are needed and used at the level where it is collected. For example, Alaska has only 10,000 live births per year, yet I must maintain a full composition that does nothing but correct identified hospital errors on birth data. The disposition has a significant backlog of work.

This, however, is only the beginning. I also have a number of research analysts, two of whom spend at least one-third to one-half of their time identifying questionable data and generating queries back to the hospitals. In addition, I have a half time field officer constantly in the hospital discussing problems and issues and providing training to clerks who turn over very frequently.

In addition to all of these efforts, NCHS also maintains staff that examines the data and returns queries to my staff. This suggests the possibility of an additional principle underlie the vision of health statistics in the 21st century, that data be collected and maintained at the level where incentives for accuracy exist.

When I think about where we go from here, as I read the draft, a number of questions began to form in my mind. What should and what can the national health statistics system look like? What should be the responsibilities of the various entities in developing and maintaining the system? What motivation exists in the system or can be built into the system to make it work? How can or should the system be financed?

I am not going to pretend to have answers to these questions, but I do have a few thoughts on how we proceed to obtain answers. A strong collaborative partnership with existing organizations can be used for a wide variety of professionals into the visioning process. AASTO, the state health office organization, NACHO, the county health officer organization, AMSHIP, the maternal and child health organization, CSCE, the state epidemiologist organization, and NAPHSIS, my organization, among many others, come immediately to mind as people who should have a strong interest in helping to refine operationalize and market the vision.

While I feel comfortable identifying these organizations, I cannot speak for, not can I committee any

organization other than NAPHSIS. NAPHSIS will support developing and marketing of an operational division. NAPHSIS's membership participation with vital records data collection, processing and distribution, various registries, hospital discharge and other data sets, including Medicaid and other insurance claims, WIC, BRUS and CRAMS, will most likely continue and expand in the future.

Moreover, existing and future technological change could be the cornerstone to significantly change how health data is managed in a consistent and standardized manner but effective federal assistance regarding privacy legislation, standardization, collaboration, partnership development and funding participation is required.

Note that I purposely said funding participation, not funding. States and similar localities are already putting significant funding and other resources into that activity and that is going to continue. Federal help would greatly enhance the process.

NAPHSIS is willing to participate in detailed discussions and work groups to refine the vision to more practical, manageable terms that can be used by legislators and policy makers at the federal, state and local levels as well as by the public and other customers. As with many visionary descriptions, there is a need to reduce the content of the report to be able to start developing methods to achieve some successes. And to show legislators how such a health statistics system will benefit the nation as well as in their constituents.

I suggest the vision can be distilled into a much briefer report with many of the main thoughts placed in bullets. This document could be used for marketing and a detailed operational implementation plan can be developed to guide future actions.

In developing the vision and operational plan, instead of trying to capture all data to measure all aspects of health because cost and philosophy prohibits such, I would recommend defining specific sets of data that exist or could exist and working to standardize these and master their collection and transformation into information. This is not a new concept. The National Center for Health Statistics cooperation health statistics system attempted to do this. Unfortunately, funding, technology, state commitment and interagency cooperation was sorely deficient.

The interim report alludes to this idea in the Zelmer, et al., paper. States are already working towards this objective through the state center for health statistics which exists albeit at different levels of effectiveness in every state. Over the last 10 years, these organizations have come to realize that they generally cannot afford to own and maintain every health data set that exists. They can, however, work through partnership and collaboration with the agencies, public or private, which own and maintain the data, and thus have access to the data sets for analysis either singly or in combination. This collaboration and partnership is the basis of the notion of a virtual center for health statistics.

This is the area where the vision can be extremely effective in developing the future of health statistics. The vision and operational plan should promote and foster cooperation, collaboration and partnership at every level. It should focus on bringing in more of the existing but underutilized data sets such as health insurance, managed care, inpatient and outpatient, billing and management system, automated medical examiner systems, WIC, public assistance, alcohol and drug abuse, family and youth services, foster care and child support which may be underutilized or not used at all at the federal, state of local level.

It should concentrate on development of a nationally applicable standards in a collaborative setting. It should deal wit how disparate data sets can be successfully employed and translated into useful information. It should build on, expand and standardize existing health information sources.

In closing, I want to thank you for your time and I want to reiterate as strongly as possible that NAPHSIS vigorously supports the vision and the visioning process and offers our active participation. Thank you.

[Applause.]

DR. LUMPKIN: Thank you.

Agenda Item: Richard Warnecke, Ph.D., University of Illinois at Chicago

DR. WARNECKE: Good morning. My name is Richard Warnecke and I am Director of the Health Policy Center and the C3enter for Health Services at the University of Illinois at Chicago. I am also professor on the faculty of the Division of epidemiology in the School of Public Health, the Department of Sociology and the Department of Public Administration at the University. And in a previous life, I directed the Survey Research Laboratory at the University of Illinois for about 15 years.

My research interests have been in cancer control and particularly focused on the medically underserved. Because of that interest, I am a consultant to the office of Special Populations and research at the National Cancer Institute and also to the California Tobacco Control Program.

I mention these things because they reflect my dependence and interest on public health data. We have been asked to comment on the principles in this section and I must say I read with great interest the vision you presented. I think they are the right principles in the general sense of being the right thing but I wonder frankly how realistic they are given the value placed on acquiring population based information by our public leadership and the increasing unwillingness of individuals to provide such information that may be necessary to run such a system.

As a researcher in the field of data collection and as a user of data, I think that perhaps the principles you outline may also conflict with each other, at least at levels of practical reality and data collection and data quality.

I also was a little bit confused about the 10 principles and the six principles, but I just commented on all of them.

The details in the list of principles for the 21st century vision, summarized on pages 15 to 19 of the interim report read as if they are of equal significance. I would suggest that if they are approached that way, that will be a problem in terms of achieving the goal. As I read the report, I was impressed by this. The visioning agenda that raised a series of questions, the first of which was how the, that did reflect a prioritization, the first of which was how the information is going to be defined and the need for some consensus around what the information needs are and what they are likely to be.

This will require consideration of questions like this I think, the burden of the various public health issues in the population, ideology of the critical threats to health, the potential for intervention, methods for tracking and methods for measuring outcomes. These are all covered in the report and then the next question is how will the level at which the information is needed affect the issues of confidentiality and privacy which are stated in both as being the primary concerns of this plan.

Arriving at a consensus requires various stakeholder groups buy into both the need and the concept of a public health strategy represented by the consensus around the data needs. It is my observation that there is not really a constituency for public health as such as there is more likely separate interest groups with individual agendas which sometimes overlap and sometimes don't so you have people concerned about AIDs, tobacco control, maternal and child health, use issues, asthma, but we have not as a field successfully created a vision for the public and for the public's representatives of an overall public health agenda to which a comprehensive health statistics program can be linked.

If a comprehensive health statistic strategy is outlined in this report, it is to be successfully implemented following the conceptual framework, that conceptual framework will require public understanding, both in the nature of public health and how the statistical program as proposed relates to that vision and more important how it is in the public' FACE="Courier New">s interest to implement it. Implementation implies investment and the plan will require considerable investment.

So are the principles of equal significance? Well, I think the most important of the principles are the first two, that is, the principle that says that confidentiality needs to be protected and the principle that there needs to be an overall plan or strategy by which it is implemented. After that, I think the other issues that come in connection with that, the other 10 or 4, depending on which list you use, have to do with questions like these. Are they of equal significance and is the information, how are the data to be aggregated, how should they be collected, what standards of quality need to be applied, how will the data be used, what is the flexibility of the data to address new issues, the level of detail necessary to impact decisions, the levels of decisions that need to be made, what data are needed to address key health decisions and then finally who has access to the data, what data will be made available, to whom will the data be made available and in what form will it be made available.

Then there are question about stakeholders. Will they support the system and how will the public respond to provide the data and then finally, because there is several statements in there about the need to be able to get data at a level that will facilitate planning and flexibility so that we can predict data in advance, those are questions that need to be addressed. My experience with standard existing data bases are that they are not amenable to new questions because the data are collected related to the questions that people are already interested in and not ones that they haven' FACE="Courier New">t thought of yet.

This is why tumor registries, for example, always have a rapid ascertainment component connected with them if they are going to be used for research because there are new hypotheses and new questions. I think as health policy develops, the same thing is going to happen with health policy. The health policy and the data connected to that that are relevant to date are not going to be relevant five years from now. The health care delivery system as a whole strikes me as being in a very unstable state in terms of what it eventually may look like and this is going to effect individual health care as well as public and private health.

Another issue that needs to be considered in all of this is the question of confidentiality. Requirements for items four, five, six, seven and nine only require that they would be collected at the individual level which may lead to some level of identification that might conflict with item one. For example, there are increasing restrictions on how researchers can even approach the public to seek information. Some of these approaches add to the respondent burden in ways that may prove to limit their participation. When you limit the participation of participants, you end up with biased data. I think that is pretty obvious.

In one example from what we are doing with public health clinics in Illinois, we are funding to study how and whether public health clinics who subcontract with departments of public health and Department of Human Resources to provide community health services. This is an evaluation of the tested smoking cessation program. We just received notice from OPRR that each of these clinics, some of which are only two or three people, are going to have to set up their own board to review compliance with this tested intervention. What is that going to do to the participation of those clinics and their willingness to do other kinds of things in the future. We are hoping we can negotiate it but it reflects an issue about the relationship between these conflicting values.

The same thing happens with consent forms, the growing demand for longer and more complete consent which is certainly responsive to some abuses in the past also serves as a disincentive and they tend to make issues that were not necessarily a big deal for the participants to be a big deal for the participants and affect their cooperation. We have already seen this in surveys as we have seen other kinds of problems.

Some of this rises from a general antipathy among the public to providing data. The social norms that support common goals that provide data seem to be eroding for a variety of reasons. And the census which was mentioned earlier is a great example. When in anybody's memory has a presidential candidate encouraged people not to fill out the census form? This happened as part of this year. When is a leader in Congress like the Senate majority leader ever told people not to break the law, not to complete a census? There also are continuing disputes about the budget to coll3ect data that meet general standards of quality.

On the other side, the public is also suspicious of data collection by government agencies or by agencies acting as agents for the government. Telephone surveys get low response rates. People do not respond to face-to-face surveys and the relative cost to make face-to-face data collection extremely costly.

This reflects some concerns about privacy but there is a tension here about the concerns about privacy and the concerns for public good. I was struck by an article in the Tribune about a situation in England where two girls were raped and they could not, after working very hard, identify the subjects so they started a door-to-door canvass to collect DNA and they got no refusals. Imagine that in the United States because there is a different value of what public responsibility is. I think in order to implement an ambitious system like this, somebody is going to have to address that question. The public doesn't understand why the data are needed. The constituency for public health and public health data is fragmented and everybody has their own agenda. There is an absence of an overall strategy for reporting data in a format that communicates value as well as its use.

And with the increasing complexity of the population, ethnic and cultural values now compete with general values. I read a recent review of some work that people were doing in California on how you respond to different kinds of questions and in many cases, the questions that are being asked, that we consider innocuous, that people that we interviewed consider innocuous are to these populations interested and invasive and problematic. That means that we have got to spend more time thinking about how we ask questions and how we ask people for data and take into account a much different social structure than we had before.

The issue that is raised in the thing about the importance of being able to respond to new questions, there are a lot of questions now about the differences in existing data systems, the SEER data system does not, because it collects data from medical records, does not include information on socioeconomic status. So it is difficult to sort out these things and planning for them in advance, everybody thought it was a major breakthrough that they got race into the data set for the SEER or they got course of first treatment, asking a hospital to provide information, financial information or even education would require the hospital to participate in these programs that provide additional data and there is not a lot of optimism that that is going to happen so the important questions that could be answered to existing data bases are not going to be answered unless we begin to thin differently about how these things are coordinated.

Well, what I was going to suggest was that we needed to do some things and one of the things I think we need to give some consideration to is how to define a constituency fr public health that is meaning to the people who are making decisions. Again, I will cite the recent experience in Illinois with the tobacco money where our legislators voted to send a great deal of it back to the taxpayer as a rebate on property taxes. The people who were opposed to that, that is, the tobacco interests and the public health interests, argued that this is a travesty but they didn't point out, for example, that by the time you got your tax rebate and paid taxes on it, it was going to be less than it was and they didn't have any data to report on what the alternative costs would be of not providing better tobacco, prevention and cassation services to the population for that money.

These are the kinds of issues. We have to learn how to address these issues in the way that is responsive to the current norms, even though they may be offensive to us. I mean, talking about things that we think are in the public bid in terms of economics is sometimes offensive but I think that is the way they are being considered and that is the way we need to learn how to talk with them.

I think also that we might benefit by socializing future generations to understand better what public health is about. They are doing some interesting things in tobacco control in California by incorporating issues related to tobacco control into the school curricula in various schools. I think we should work to get that to happen for public health in general so that in math class the students compute rates and understand what morbidity and mortality in these things are and how they affect them and how the statistics that are collected by your system are important for answering those questions.

I think we need to involve the health care delivery system in whatever partnership or coalition or collaboration comes out of this but I think the question is, if we do that, again we come back to confidentiality and concerns, are those collaborators going to want to use the information that they are providing together with the information that they are collaborating and collecting for purposes that we may not want them to and I think that is going to be a big issue. Insurance companies may be a big source of data. They also may want access to the data that they are providing to help.

You mentioned that in your report. I think, though, around the issue of collaboration that is going to be significant. And finally, I think it is time that OPRR, Office of Management and Budget, the major statistical and survey agencies, get together and work out a strategy for confidentiality and the protection of research risks that make sense because right now it is not understandable to anyone and it is not going to help you implement the kind of system that you have. Thank you.

[Applause.]

DR. LUMPKIN: Thank you. Are there questions for the two panelists? I would like to welcome Dan who has only been trying to reach here for the last 18 hours or so.

Al, I have a question. You said a number of times that state health agencies don't do research by and large but I think that we may have a problem with terms in that I would be hesitant to say that state health agencies don't create new knowledge.

MR. ZANGRI: I would agree.

DR. LUMPKIN: And so the difficulties that we have in trying to define this because I think, for instance, making the connection as I said in my opening comments, between a group of illnesses and an organism in the water in Milwaukee was, in fact, new knowledge that had an impact on health throughout the country. One would say that if you are a health official in the middle of this outbreak, you are not doing research. You are actually doing your job and we may need to have some term to better define the reconversion of data into information and information into knowledge in the course of public health business activities.

MR. ZANGRI: I agree. That was exactly my point, that as we know research in the in-state health agencies and the academic community, we are generally talking about a defined protocol with a defined set of subjects and a defined hypothesis. When we talk about health status monitoring, as you are well aware, in a public health agency, what we are generally talking about is a reaction to a major problem and making sure we have the information there to deal with the problem and making sure we have the information there to identify where potential problems are coming from.

DR. ZUBELDIA: Dr. Warnecke, you made the comment that hospitals and entities that are collecting data may not want to collect the additional information or maybe may want to withdraw from the studies because of the additional requirements. Do you think that the principle of collecting data just once would be helpful in those situations? They may not have to collect income or educational data because that has already been collected once elsewhere. Is that an effective way?

DR. Warnecke: If you have a data set that exists, that already has all those elements, that is fine. In the case of the SEER registry, they don't and hospitals don't collect that information. It is not part of the medical record which is where the information for the SEER registry comes from. Yes, collecting information just once is a good thing to do although you are not really asking them to collect it once. You are asking them to collect it on different people continuously.

If you are going to monitor or assess the outcome of something, then collecting the data just once isn't going to help you much because it is going to give you a point estimate of what is going on at one time but it is not going to tell you how things are changing over time. So I did not understand, I mean, I understand the value of saying you only have to do this once, but in terms of the statistical program, I think that is a hard promise to make and keep.

DR. LUMPKIN: Other questions? Richard?

DR. MC DONALD: The issue of public health and data collection and making the case to the public, I want to just get your thoughts on it. One of the challenges that might be that when you talk about epidemiologic data collection, one can find some good stories that I think the public can kind of glom onto like the smoking and the association with various diseases. But it gets more difficult probably from the public's perspective to say we want to collect this data item, race or ethnicity, because and then you go through a series of comments maybe we will learn. You don't have a strong, a lifesaving story in it and so I think you need to articulate or find a way to articulate how that data comes out to help with the public as some of the other ones did before you can get them.

DR. WARNECKE: This is where I think I am coming to believe that a different kind of public health coalition or constituency needs to be taken into consideration. It needs to be somewhat broader than just the people who are in, quote, public health. Even there, though, there are great divisions. I mean, we tried to organize around the tobacco thing and you couldn' FACE="Courier New">t get 10 people from different areas to agree on what was the most important issue. That is a problem but you have natural allies. I mean, John Porter from our state has been a great ally for certain areas of public health. Frisk from Tennessee has been very important in bringing certain issues to the forefront and getting money for the Agency for Health Care Research and Quality.

They need to be shown how they can use their influence with their constituents, both their colleagues and their public constituents to explain this issue. I mean, public health is very broad. It is not like cancer or something else where you can declare a war on. But it is, and for that reason is it very hard to sell but I think if some thought were given to how we could use our natural allies who already understand the principles and help them create, I think part of this public relations issue, I also think we need to teach children what this means so that the next generation won' FACE="Courier New">t be running into the problems that we are running into.

DR. MC DONALD: Maybe you miscued me. I wasn' FACE="Courier New">t arguing. I actually think public health is a very saleable story. It is the data collection efforts of specific kinds one has to track it to the concrete ends in terms of the story to make the argument versus collecting it on a sample.

DR. WARNECKE: The saddest story I think was the funded project to study the AIDS epidemic during the height of it and then a couple of influential senators said they were not going to support this so they finally had to go to a private foundation to get the money. Now, we should be able to collect information about a disease that is as threatening to our public as that is. Still one of those things that you can't just go out and get it.

So I agree that the story has to be told better. I think there is this problem, though, that there is a certain environment right now, value climate, that doesn't value that kind of information and see its utility and I think we have to figure out how to address that because I think it is going to get serious, worse than better myself.

DR. LUMPKIN: We have time for one more question, Richard.

DR. HARDING: Clem basically asked my questions.

DR. LUMPKIN: Okay, at this point are there any comments from the floor, the audience? We will have some time later this afternoon, too. Okay, then we are going to thank the panel very much. As I mentioned earlier this morning, this is a process of fact finding. Earlier processes led to the 10 principles. We have had some suggestions for changes to those principles as well as additions which the work group will be considering as we move towards completing the activity in 2001. I would like to thank everyone for attending.

My watch says roughly 12:10. We will reconvene at 1:00.

(Whereupon, the meeting recessed for lunch.)

Agenda Item: Overview of Interim Report, "Toward a National Health Information Infrastructure" - John R. Lumpkin, M.D., M.P.H., Chair, Workgroup on NHI

DR. LUMPKIN: My name is John Lumpkin. I am chair of the committee and also the director of the Illinois Department of Public Health. As you know, this morning I gave a presentation to start it off for Dan. Since Dan is here I thought maybe you might be, no, I guess not but it has been very important for us to work very closely together so you will see lot of similarity in content and thought and coordinating the work of the two committees. I would be a little bit remiss since I didn't do it this morning to invite all of you to Illinois on behalf of Governor George Ryan and this is a wonderful state. Feel free to purchase anything you may want to here and don't forget to pay the sales tax since it is directly related to my salary.

This afternoon we are going to talk about the National Health Information Infrastructure and this is the work group and staff who were responsible for creating the document that you have all seen.

Let's start off to talk about health. Because it is national, I don't think I need to describe national but health I thought maybe we needed to have some understanding. We use health in a broad sense. First of all, that health is a general sense of emotional, spiritual and physical well being, not just the absence of disease in the infirmary. That is the World Health Organization' FACE="Courier New">s definition. In addition, we have a conceptual model that health is a shared responsibility, not only just for the health care system and the public health system but a much broader responsibility such as the Rotarians who are engaged in an immunization campaign both here and throughout the world. We look at health as being the partnership.

The former governor of Illinois once said that government alone can cause problems but government alone cannot solve them and so when we look at health we have to recognize that it is a public and private partnership and that health is multi-factorial, that there are more things that are involved in health than just dealing with disease or dealing with health care but that the physical environment, the social environment, general environment, all of these factors have a place to play in the sharing of good health. The complication is that the more factors you have in play, the more difficulty you have in trying to integrate those in assuring the health outcome and so information technology becomes very important.

Many of you have probably seen more of this in the last couple of days than you really wanted to. This is the cockpit of an airplane. The ones I usually fly down to our state capital in Springfield where I get most of my travel miles from does not look quite as complicated as this but it has many of the same features. Any of us getting into our airplane would feel relatively comfortable knowing that all of these lights and valves and whistles and everything will help the pilot get to where we want to go.

In fact, a DC-10, by the way, I don't know if you know, the last time I landed in one of those, we landed, it was interesting because there was this fog bank right at the end of the runway and the plane just set down right into it and went through the fog bank and then out into the sunshine and the pilot said by the way, this was an automatic landing which means the computer completed the whole landing.

You know, you kind of think about that. The computer measures the ground distance and everything and as long as some whiz kid at NASA doesn't forget to convert between miles and kilometers, we will be okay. Unfortunately, most of us would feel fairly uncomfortable to get into an airplane that looked like this, with an altimeter, a speedometer and a compass. One would think that if you had a modern airplane with that sort of equipment, your chances of reaching your destination safely might be dramatically reduced. Yet, the truth of the matter is, this is what our health care system looks like. While we might have a lot of high tech stuff, information technology is part of health care, has been really underutilized. In fact, estimates are somewhere in the neighborhood of two percent of gross revenue is going to information systems in health care as opposed to eight percent in the airline industry or eight percent in the automobile industry. It goes throughout most of the industry and you will recognize where we are.

So if you are going to engage in the business of health, then we need to look at how we can move from where we are now which is a health system that basically hasn't fundamentally changed throughout the 20th century. In the beginning of the 20th century, people pretty much were taken care of by their clinician who would walk in and the system was fairly similar to what it was when I trained. I trained at Northwestern University. They had the caste system. The had the medical students with white coats, short white coats. They had the resident with the blue coats and then the attending with the gray coats unless you are really an Americus attending and then you had the long white lab coats.

But it is not the color of the coats that is so much an indicator of someone's level, it is what they have got in their pockets. The medical students, their pockets are kind of bulging. They have got little notebooks, they have got notecards. The residents have a few notecards and the attendings generally just have a stethoscope in their pocket unless they are one of those specialities that have all this neat equipment. If they are an OB-GYN they may have an ultrasound in their pocket or something along those lines.

But the image has always been is that if you are really good, and when you go in and see the patient, all you bring in is what you have between your ears. And that is the best health care. Only the medical students and some of the residents who are kind of junior have to look at our notes to look up the dosages on medications.

This is what is now expected within the health care system but also expected by the patient. Most people are uncomfortable if the doc says, you know, I am not really quite sure about that, let me look it up. And then people say, well, why don't you know that. And they might think that that is not quite a good health care in turn.

So this is a medicine and this is the health. I would like to define it somewhat differently if we think about it in the business sense and we will find business resources. That the business of health is helping people stay healthy, helping people get better when they are ill, helping people live with illness when their illness is chronic and how people manage a change in lifestyle when the illness impairs their function.

So the National Health Information Infrastructure is a set of technology standards applications systems, values and losses. We are at all facets of individual health, health care and the public health and the goal for this is not to create a centralized data base but to create a way in which health information can flow in a normalized fashion to generate health, to achieve the goals of the business of health.

Part of this is by setting up data standards and data models. The transaction regulations we expect any time now, assuming they can finish their last hurdles of the approval process. Connectivity standards and data models and the data models we think are like the Australian model where you have this overarching model. You click on a party and they do thinks differently down in Australia. I think of clicking on a party and I think it is party time. If you click on a party they are talking about an individual. If you click on address it will go down and you would have a specification for how the address should be. The national data model, this sets up all the data standards.

That approach in the United States is somewhat different. First of all, we have to recognize the importance of privacy as a crucial part of any national health information infrastructure, protect the privacy of the data, to insure confidentiality and to make sure that security is engineered into the system. This is a very important piece because when we were conducting hearings as a committee on security in the state of health systems, many of the vendors told us that they intentionally turn off the security provisions that are built into the operating systems because that is what the customers want and so we obviously have to reverse that trend.

Other standards, the HIPA standards, X-12, H-7, we are all familiar with these standards, standards for transmission. But standards are not enough when we talk about an information system and the reason is that the goal for the system is to have quality health, to have good health care outcomes, to make good health decisions, either by providers or individuals having that kind of information, knowing what is going on in their community. That means that we have to do more than just provide data. The goal is to push knowledge down to the point of service. If anybody has had the opportunity to purchase a computer over the Internet or by mail order, when it comes something is wrong. You call them up and they say, okay, the techie that I am, I will plug the mouse, I will plug the keyboard and switch them and see if that works.

Where did this guy come up with that sort of stuff? Was he sitting at home one night and his computer was messing up and he asked his kid how to do it? No. What they do is they take some of the best computer repair people in the country, they bring them into the room and they start throwing scenarios at them and they create an expert system, taking the rules that they learned and they apply it to them. When that person is sitting there at the other end of the phone, they are typing into the computer your complaint.

And what that computer does is say okay, here is the five types of things that are effective. Then when we are done and it works for you, then if it was number four that worked, number four would move up a little bit. That kind of decisional support system helps them by taking the knowledge from the best in the field and making it available to fingertips of the people who provide the service.

I believe the people in health care want to do the best they can in delivering services and by and large, the errors that exist and we have had a lot of attention on errors for one of three reasons.

The first reason is they don't know what they should know at that particular point in time and given the large body of knowledge that is necessary to practice health care in this country it is not surprising. Trends change. I can remember when I start and we were dealing with somebody in cardiac arrest because my field is emergency medicine. We used to give then a big push of calcium and a big push of bicarb. Well, we don't do it anymore. We think it poisons the heart to do that.

If you missed those articles somewhere down the line, you are missing knowledge and you can get back here. So that is one of the reasons.

The second reasons is there are forces externally that are forcing you to do things that you wouldn't normally do. So you know better but you just don't do that. What are the forces that may do that? Managed care is an example. Most interactions you know that the time aspect with the patient is a very important factor in health outcomes. Yet, if managed care and the economics of it is saying that you can no longer spend half an hour with a patient. You have to spend 10 minutes with the patient, then they are forcing that clinician to do something he wouldn't normally do. Availability of drugs and the formula is another example. All these things kind of force people into making errors that they wouldn't normally.

And the third one is, I always call it the oops factor. You know what to do and the system may not be an impediment doing what you think ought to be done but it is like where was my mind today. Many of these errors can be corrected but the right kind of information system, decisional support that says, Oh God, did you forget? Or could you have done something else.

And so the errors in health care can be removed by having the right sort of divisional support. So we are talking about the national health information infrastructure. We have to recognize that we are in a universe of health data. Some comes from providers, some from administrative data, some from personal data, some from community-based data, some is quality data. But the NHI is looking at this data in a different way. We have three test cases that we are looking at. One is a personal view, a personal dimension. Another is a caregiver dimension. Another is a community dimension.

If we can design a health system that will be functional, It will be functional in those three dimensions as well as others, quality or other. And so we are trying to define those. If a person with dementia allows someone to support the management of individual wellness and health care decision making. That includes the personal health record, prevention control by the individual or family and other non-clinical things like where they like to get their health information from. This allows an individual to get the right, appropriate knowledge, the data and to make the best possible health decisions.

It can be stored any place from a smart card to their household computer and the individual has control at the level of each data element in the groups of who gets to see it and when.

The health care provider provision is generally described in computer based patient record by the Institute of Medicine. Also you can go to the website of the National Committee for Vital and Health Statistics, within the next week or so the recommendations on the patient medical record information document will describe many of the provisions of the health care caregiver dimension. It assists the caregiver by having data available both from the individual as well as the community and it would have the kind of decisional support to enhance the quality.

The primary care record is under the control of the provider who captures original information. That record will exist just as the records exist now. It is not in a big national data base, but it is individual locations of data that can be associated at the appropriate time. Confidentiality and privacy determinations would say when that data can be shared under the control of the patient.

Community health dimension supports identification of health threats, assessments of population and health status focuses programs and services and encompasses population based health data. None of these are a single data base, either public health information or individual information. An individual may create a total health record that they may control but look at this. Their neighbors may be someplace else.

And so as we look at this within the community health dimension, individually identifiable data by authorized public health workers, this is the report of a sexually transmitted disease, tuberculosis and then there is identified data that we use for population health research and finally public access to aggregated data. So this is the spectrum of the kind of information that will be available.

And so the National Health Information Infrastructure is more than just a technology. It is privacy protection, it is standards, it is business miles, attitudes, practices to lead towards equity.

Our goal, and this is the first hearing we have conducted, despite the four that have been held prior to for the Health Statistic for the 21st Century Vision, validation of our vision, identification of barriers and development of recommendations and then we use that to gain the commitment to implementation.

Any questions on that? Let's move on to our panel.

Agenda Item: Dimensions of a National Health Information Infrastructure - Eric Boberg, Ph.D., University of Wisconsin

DR. LUMPKIN: Let's see, why don't we have the panel, the first afternoon panel, if you could just introduce yourself and then start off with Eric.

DR. BOBERG: My name is Eric Boberg. I work at the University of Wisconsin on what is called the CHESS project, the Comprehensive Health Enhancement Support System. I am speaking particularly around the personal health dimension.

DR. ECKOFF: Ron Eckoff, Iowa Department of Public Health. Here on this panel in place of Dr. Gleason, director of our department, speaking a little bit more about the community health dimension than anything else.

DR. ALBAN: I am Christopher Alban. I am an emergency physician with Epic Systems. We do electronic medical records and I will be talking specifically on the provider health dimension.

DR. BOBERG: As I said, I am going to talk a little bit this morning or this afternoon about CHESS, the Comprehensive Health Enhancement Support System. We have been working on this program now for over 10 years. It is one of the first of what is now called interactive health communications systems and we have learned a lot about how people use this system and the barriers to implementing systems like it that I think will be of use as you study the personal health dimension and how it might be implemented.

CHESS is unique in several ways. There are tens of thousands of health related websites out there but there are a few things that we do differently than most folks do. First of all, it has got a theoretical basis. When we started 10 years ago, we didn't just think about what we might want to have on the system but we went to the literature and looked at crisis theory and behavior change theory and coping theory and learning theories and we designed tools that were meant to help people, whatever their learning or coping styles were, and we think that is very important.

CHESS has a wide variety of tools, it is not just information. There are plenty of information data bases but there are also behavior change tools, there are decision support tools, there are tracking tools, there is social support.

Another real key element to CHESS is that we start each module and all of our programs are topic-specific, whether it is breast cancer or asthma or a teen smoking cessation, we start by going to folks who are affected by that issue and understanding what it is like to be a person with that condition, not just a patient but a person so that we integrate not only the medical needs but their legal, social, financial and other types of needs and we assume that we know nothing, that the providers know nothing, and we spend a lot of time understanding the condition and what it is like to live with it and we think that is very important because if the system does not have what the patients are looking for, they are not going to turn it on no matter how much it has got that we think they should have.

Finally, we have always focused on non-computer users, in spite of the fact that we use the computer as our intervention, we design it for folks who are sitting down at a computer for a first time and this has been very important because we have been studying diseases like breast cancer and prostate cancer which have a primarily older population and so we sit down 70 or 80-year-old women who have never touched a computer before and we have a system which they can understand and not be intimidated by it. We think that is very important.

We have learned a lot in 10 years of research. One thing we learned early on was that you need to provide an incentive to use. That is why our programs are all targeted at folks who actually have an illness. It is not for women who is at risk for breast cancer that we focus on, it is the woman who has breast cancer because it is a difficult time and it is a new thing and they have got enough to worry about without having to, I'm sorry I got off the track there. But the computer is intimidating enough for many people and enough of a barrier for someone who is just at risk to take time out from their busy lives to sit down and learn that but when you have got a life-threatening illness, then you will overcome those barriers. So in this case that is the incentive.

My point being that as we try and broaden this out for folks who are generally healthier and at risk to keep them well, we have to figure out what the appropriate incentives are to get them over the hump, to sit down and learn this new technology and change their behavior because if there is anything we know, it is that changing behavior ain't easy and the personal health dimension we are talking about is going to require a lot of behavior change.

We learned with CHESS, though, that patients use it a lot. Interestingly, they don't use it for information most. They use it most for social support. Through the social support they get a lot of information and they can be guided through the other types of services that CHESS has but that is not where they go first. They go to speak to other people who are facing the same condition and get the support from them that they need.

One of the very interesting things we learned is you cannot predict who is going to use the darn thing, not based on education, race, income, any socioeconomic factor you can think of. Not everyone will use it but you can't predict who will use it, and one of the other results of our research that we have just discovered is that it is the underserved people who benefit the most. We have done a clinical trial of patients, women with breast cancer and it is folks with lower education, less insurance, lower on the socioeconomic scale who benefit the most.

We take away for our research the access issue. If they don't have a computer, we give it to them so if you take away access, it is the population that needs it the most that benefits the most and that is something that is very important to remember is that those of us in this room who are college-educated, white middle class folks, we have got a lot of resources to draw on and a system like this will be of incremental benefit to us. It will be a benefit but it is for the folks who are in inner city Chicago who have no social support system whatsoever to deal with an illness because in that culture they don't talk about illness. It is those folks we need to design the system for and to keep in mind.

We have also discovered CHESS can in clinical trials improved quality of life and reduce health care costs and that is very important.

Another thing that is very interesting, we are just learning, is that now that we are on the Internet, we have a distinction to make between CHESS and all the other sites that are out there. One that we are discovering is that if you give folks a computer with CHESS on it, it is their home page and the place that they go first. They use that computer and the Internet mostly to get health care information because that is where they are starting, that is their point of access. If you just give them a computer with an Internet browser on it and say there is the Internet, there is a lot of information out there, go to it, they spend a lot of time with CNN, with Sports Illustrated and Hot Babes dot com and whatever other types of places. Eventually they will get around to health information. And these are people who have illnesses. They are not just folks in the general population so it is again an indication that we need to provide incentives and an intervention that people really relate to.

What else have we learned? We generally implement this thing through health care providers. They have been out major partners in the research studies. Also in the limited licensing and dissemination we have done. It has generally been through health care providers. And there are a number of issues there.

First off is health care providers want these kinds of tools for their patients but they don't want to have to do anything for them. They don't have money to pay for them and they don't want their physicians or their nursing staff being appointed contact for the patients. Nobody pays for that. Doctor-patient e-mail is not covered by anybody and in this kind of system, the cost for staffing this kind of system are not paid for by anybody. It has got to come out of their own belief in quality of care or in patient education and it is fairly nebulous and there are not as many health care providers as we would like out there who believe in that.

So while CHESS can be set up to be the point of contact between patient and provider, it is not, it is not used that way at all. We have an ask-the-expert service that people can get answers to the health care question but that is done generally anonymously and done by our staff and not the staff of the health care providers.

Another thing we have discovered is that implementing a system like this, even at the level of referring patients to it requires changes in practice patterns and folks are pretty resistant to that for a variety of reasons. One is the typical behavior change. That is hard. But doctors and patients have very little time together these days. So we have one physician who has been with us for 10 years. He helped design CHESS, he helped write the content, review the content. He deeply believes in what we do, and he never remembers referring patients. He has got eight minutes with a women with breast cancer and he just doesn't remember. It is always done by the nursing staff or someone else.

So changing practice patterns is going to be very difficult. A lot of what in the report refers to the interactions between patients and providers is going to require tremendous changes in practice patterns. It is a good end and we want to get there but we have to think about how are we going to get over this hump of getting from where we are which is chaotic, short interventions to the idealized world that is envisioned in the report.

What are some things that the patient wants that we have or have not been able to provide? There are a few technology things we have discovered. One is that we haven't gotten there yet in terms of the technology. We are now using laptops instead of desktops but they are still fairly chunky things that people have to get used to using, particularly now this mouse thing. In 1990 when we started with CHESS, it was a DOS-based system and all you needed was a keyboard and an arrow pad and you could get all over the system. Well, now, you virtually need a mouse. Yes, there are accessibility options to get around it but the reality is for most patients they have got to use the mouse and if you have never used it, it is hard. And it is a big barrier. So somehow we have got to get over that. We have got to get over download times, that graphics over the Internet are still slow for most people.

Folks want more real time interactions so we are now implementing things like chat functions. And so there is some technology issues. Our feeling is that those are going to be taken care of, that technology is advancing faster than we have the ability to harness it and by the time we get over the cultural issues and all of the other barriers that there are, the technology will catch up to us and we are already seeing that. Internet appliances are coming out now that are going to be hand-held within the next year or two and that will overcome much of this.

The other thing that we are really discovering, we need to do even better than we do now, is tailor the system. We have tried to focus the system that is for people who are not using computers. Well, this frustrates the people who are using computers because they are looking to do more, faster, quicker. And so what we are seeing as the next generation of CHESS is a system that is tailored to the type of user you have got, that knows somehow that I am an advanced computer user and so I want 18 different options on my screen so I can pick them out or that I am a first time user so I need just one thing at a time that I can absorb and then go home.

This is, I think, very critical to the personal health dimension is that it needs to be tailored to the type of user that you have got and there are two types of tailoring. One is what we typically call the digital divide, the sort of socioeconomic tailoring that is assuming whether or not people are used to computers or not and that some folks have them and some folks don' FACE="Courier New">t and some are used to them and some are not.

That is only one type. There is another type of tailoring and that is around effect that we have a remarkably diverse set of cultures in this country and we are, we tend to come at this issue from our own backgrounds which the developers tend to be college educated white folks for the most part and there are a lot of other cultures out there that are not going to respond to the types of systems that we develop. If we take CHESS as it stands onto an Indian reservation, it is not going to be very useful and so we really need to address the different types of cultures that are out there. Some cultures don' FACE="Courier New">t talk about health care issues. Some put a lot more emphasis on complementary, alternative, non-traditional treatment. We have to recognize that and the system needs to respond to that.

For all of the tens of thousands, hundreds of thousands, millions of websites that are out there, nobody is doing that virtually. I think it is not overstating the fact to say that it is an embarrassment, the state of health care information on the Internet today. What we almost all of us do is we design a first generation system that works for us and then we have a choice. There is a fork in the road. Do we adapt this system for other cultures? And by that I don't mean just translating the words into Spanish but going to the Spanish populations and doing what is called a culturally appropriate translation that meets the needs of that population. There are virtually no websites out there that are culturally sensitive, Spanish health-related sites. There are a few that have Spanish language but virtually none that deal with Spanish and beyond that it is even less.

So frankly that is an embarrassment to all of us that deal in the field and we are as guilty as anybody else because we have redesigned CHESS's operating system three times and its interface six times and we still don't have a Spanish version of any kind.

I would just like to say a few things. I realize there is a panel on barriers coming in a bit. I didn't realize that when I came here so I have a few points to say about barriers that maybe won't come up from the other panelists.

One is raising health consciousness. I said in my prepared comments health consciousness in this country is only skin deep and it relates to attractiveness and weight and things like that and it is not a pill that will help us lose weight without exercising or eating less, we are not interested. So there is a long way to go in this country to get people to take the increased personal responsibility for their health that the personal health dimension implies. We need to find the incentive to get people involved and that is going to be very difficult.

Privacy has already come up and it will come up again and again and it is not just real privacy issues, it is the imagined privacy issues. It is what can big brother do, what can I imagine that big brother can do whether or not he has the capability. That is very important.

Ownership of health information. That has probably already come up this morning and will again this afternoon. The person who took them sort of assumes it is theirs or maybe the insurance company who paid for it assumes it is theirs so questions about how do we paws this back and forth in an appropriate way are going to be very daunting to overcome.

Another thing, because CHESS has been around for 10 years we have noticed, and I have alluded to it already, is what could be called technology creep thought creep is obviously a misnomer. In the 10 years we have been doing this, we have literally gone from DOS to windows to the Internet and there will be another revolution any moment now. Any system we have designed has got to be responsive to that. Otherwise by the time we put it in the field, it will be so technologically outdated that it will be a dinosaur and useless to most folks. So that is something to be remembered.

We need strong leadership. It is a well-overused analogy but without President Kennedy we never would have been on the moon. And it is that kind of leadership that is going to be required in order to get the public and the health care providers and the insurers and all of the folks that are involved to accept the pain that is going to be involved in implementing this because in order to get there it is going to be tough. One of the things that I like to allude to is two or three times now I have purchased these systems to allow you to input all of your own personal health history and get that all in one place. I stopped every time about the time it involves going beyond what my parents can recall to going to the health care provider that was my pediatrician, four moves ago.

It is exactly what we are trying to overcome, this initial hump of getting, collecting all that information and getting it together is going to be very difficult for both the providers and the patients.

We need to, there is a lot of theory out there about how to go about this and I realize I am an academic and so I speak from an academic perspective but there is diffusion of innovation theory. Everett Rogers's work is out there that is going to be very useful. Behavior change theory and Jim Prochowska(?)'s thing. These folks or these types of folks should be involved from the beginning in learning how to get this out there because essentially what we have is a huge marketing job. We have to create a demand. We have to be the Nintendo folks that create something the people want and will put up with the cost and the discomfort and the effort involved to implement it.

Those folks should be involved from the beginning and so I guess to sum up and summarize, my strongest feelings on the issue are that all of the stakeholders need to be involved from the very beginning and throughout the process. If we put the computer folks and the health information folks in a room to develop a system, it will never be used by anyone. We need patients, we need providers, we need marketing folks, we need academics all to be talking about this together and designing it together and that every step of the way, when we develop prototypes, we need to go back to all of those folks and figure out what works and what doesn't work. It is a painful way to do it but anything else is probably going to be a waste of money.

[Applause.]

Agenda Item: Ronald Eckoff, M.D., M.P.H., Iowa Department of Health

DR. ECKOFF: Thank you. I am Ron Eckoff. Dr. Steve Gleason, the director of the Iowa Department of Public Health was invited to be on this panel but he had a conflict and wasn't able to come and since I was coming to be on a later panel, I agreed to take his place. The comments I will make today attempt to present some of his thoughts and some of my own thoughts and you won't know which are which.

I found these two reports to be very interesting and I think the vision and the principles are excellent. I suspect that I won't present any new or unique thoughts this afternoon but I will try to emphasize a few points that I think are particularly important.

In this panel I will focus primarily on the community health dimension and some discussion about privacy issues since I have an opportunity later to present a little bit broader testimony. I think the Community Health Division proposes to include what we might call traditional public health data plus some added information from the health care provider dimension and a variety of resource information. In general this is probably not a lot different than what at least some local public health agencies try to do now.

There will be increased integration with information from the health care provider dimension and I think this has the potential for increased timeliness of information on such things as health status and outcomes, healthy events, health care utilization and other areas. It also may have the potential for reductions in specialized recording requirements if we can really manage to capture the information in routine ways in a timely way but it will require a well-operating comprehensive system or will just increase the duplication.

I think the general concept and the types of components to be included in the community health dimension are very logical. I will focus on just a few issues and some of this revolves in particular around state public health agencies and local public health agencies and providers.

I think most state public health agencies provide a great amount of information to local agencies and it is provided in an increasing variety of formats and ways. At the same time it is frequently not provided in a very timely way and I think that has to be addressed in this effort.

Beyond that, although we frequently provide an abundance of information I think the states frequently fall down on offering training and ongoing support in the interpretation of the use of the data where we send reams whether it is on paper or computer disk or Internet. We send tons of information to the local folks and if we do offer any guidance about using it, it frequently revolves around some specific program that we have a particular interest in rather than revolving around a broad use of the data as I think is really visualized in the community health dimension.

So we really need to have an increase and ongoing training and support for local public health boards, public health leaders, staff, a wide variety of people and it must be understandable and usable. I think this is probably primarily the responsibility of state public health agencies with support from the federal level.

As a part of that, I think we need to somehow reduce the number phobia that so many of us seem to have. Closely related to this is an issue that I think we mentioned from Alaska and we certainly see in Iowa and that has to do with small numbers. In many states including Iowa we have many small public health jurisdictions and we provide these small jurisdictions all kinds of data but data that ends up being relatively meaningless because of the small numbers.

In Iowa our public health agencies are organized at the county level and we have 99 counties. Eighteen of those counties have populations under 10,000 people. Another 47 have populations 10,000 to 20,000. That makes two-thirds of our countries have populations less then 20,000 people. We have 12 more counties with populations of 20,000 to 30,000; 12 more from 30,000 to 50,000. So that leaves 10 our 99 counties with populations over 50,000. Five of those in the 50,000 to 100,000; four in the 100,000 to 200,000 and one with a population over 200,000.

I think no matter how you slice it, it is pretty difficult to analyze the data from a county with 10,000 population and make real sense out of it. You can add years together, you can add adjacent counties together and that may help you define some of the health problems but it is exceedingly difficult to use the data for any outcome program evaluation type effort.

Aside from telling the counties they should merge which is not a politically popular thing to do in Iowa, I think we need to do a far better job of working with local jurisdictions on what is realistic for them to do with data and I think you could have some of the same kind of discussion when you start talking about numbers with race or ethnic or other kinds of groupings.

A comment about where the contents of the community health dimension will be stored. The report says this will not be a monolithic community health dimension that there will be components and data sets residing in multiple locations separated geographically but accessible to authorized users for approved purposes. That makes sense but it also requires some kind of a logical way, a directory that makes it clear what is available, where it is available, who has access, how do you secure the access and will require constant training regarding that.

Such a directory may help make it more clear to everyone what some of the components are. There also need to be a way to inform the public and health care providers of the components for the personal health dimension and the health care provider dimension.

This discussion leads to a look at privacy and confidentiality which was listed as a first and overarching principle in the vision paper. And as other people have said, I think this is exceedingly important for the success of this effort. And to some extent as Eric did, I divided into two parts. The one is the proper handling of data to maintain privacy and since I am not a technical person I can say I think it is probably technically feasible to do all the things necessary to keep the confidentiality and the privacy. But I think the much bigger issue is the public perception of privacy or the health care provider's perception. And I think this is much, much more difficult to achieve. Like so many things it is the people issues and the impressions and perceptions that are much more difficult than the technical issues.

The magazine section of the Sunday paper that I read had an article about privacy a week ago and much of it was based on a pool of 1,017 adults. Here is a few bits of data from that.

Fifty-three percent were extremely concerned with the ability to keep personal information private; 43 percent think protecting their privacy is a problem now; and 70 percent expect this to be worse in five years; 51 percent think current laws do an inadequate job of protecting their right to privacy; 43 percent say the government poses the greatest threat to privacy; 24 percent say the media; 18 percent say corporations.

Sixty-one percent say too many people have access to their medical records; 62 too many have access to their driving records; 79 too many have access to their financial records; and 84 percent said too many people have access to their credit report.

Dr. Gleason recently wrote an article for our department newsletter about the human genome project. He talked about the great benefits of this but focused even more on the privacy issues. He quoted a recent Washington Post article which stated, millions of individual medical records float around these days in a vast electronic network that serves both commerce and scientific research but that network doesn't always serve patients. Worried that loss of privacy may lead to discrimination, embarrassment, loss of benefits and stigma, some patients are withdrawing from full participation in their health plans.

Dr. Gleason quoted a January 1999 survey by the California Health Care Foundation which found that one of six people take some action to avoid disclosure of his or her medical records. These actions include lying to doctors, providing inaccurate information, doctor hopping, paying for private care out of pocket and avoiding health care altogether. Many of these actions or failures to act are a threat to public health. Therefore Dr. Gleason and the governor of our state have made privacy a priority on the state public health agenda for the coming year.

Then I think it was when I got home Friday night I found the August issue of Consumer Reports which had a major article titled, Who Knows Your Medical Secrets? Subtitle, it is getting easier for health marketers, your boss and your mortgage company to find out what ails you.

These are just an indication of I think the concern that people have. Again, the perception of privacy.

So in addition to doing everything to protect privacy and confidentiality, I think there needs to be some kind of a major effort to assure the public about their privacy. At the same time it can't be done in such a way that the public feels they are being snowed and they become even more concerned. Many of us have a tendency to get worried when we get the hard cell. If a movie is really heavily promoted it must be a dud.

The second on privacy and the common good calls for a two-pronged approach. One, national and state legislation to protect privacy and two, the public and policy makers need to become more aware of the ways in which we all depend on health statistics and those responsible for health statistics much ensure that health statistics tell Americans what they need and want to know about their health.

I would expand this second prong or add a third prong to really try to education the citizens about their privacy and how it is protected. Dr. Gleason concluded his article by saying, as any health care practitioner knows, the violation of privacy damages the trust that is fundamental to good care. Trust, like the mind, is a terrible thing to waste. Similarly, any violation or even perceived violation of privacy that will damage the trust that is necessary for the National Health Information Infrastructure to succeed.

I am pleased to see the careful thought that is going into this National Health Information Infrastructure. I think the concepts and principles are very good and I look forward to the continued development and implementation. Thank you.

[Applause.]

Agenda Item: Christopher Alban, M.D., MBA, Epic Systems Corporation

DR. ALBAN: I am Christopher Alban and I am an emergency physician at Epic Systems Corporation. I am somewhat humbled by the experience of the people who created the interim report and here in the room. I will try to lend my two cents to this and from what, also to rely on a bit of the 20 years' FACE="Courier New"> experience that the company I work for, Epic Systems, has in developing software for health care organizations, particularly in the electronic medical record side and as well the practice management that directly has an impact on physicians in the practice.

I am specifically going to be talking to the provider care dimension and that is really a big part of the contact I have at Epic Systems is dealing with our physician users and what they face using electronic medical records and what that means to their lives and their practices.

We have roughly 30,000 physicians using our clinical systems, either the basic browser based clinical data retrieval systems. Two of the more fully functional electronic medical records capturing discreet data and doing a lot of the things that the capturing the kinds of data that we have been talking about both this morning and this afternoon.

I can also talk from the standpoint of having to develop these systems. What does it take to create these user interfaces that will be intuitive and easy to use and what is that process of getting to that point where someone actually looks at the thing and says yes, I can use this system. And it is not just the people we see now coming to training who are the 25-year-old medical students who are taking notes on a palm pilot when we are training them but it is the chief of staff who is in his 50s who doesn' FACE="Courier New">t really know how to type and doesn't really use the computer anywhere near how well as his kid does, but nevertheless knows that there is a significant benefit potentially to be using the thing and has some of the same vision that the NHII seems to put out there.

Likewise, a big thing that has come through with us is a big point of having an electronic medical record is if you present the key decision support at the point someone is making a decision you can actually change behavior and as Eric said earlier, changing behavior ain't easy. That is really true. We see a lot of that and the better we can do our job at getting those alerts and those prompts right at that point, the easier it is to begin changing that behavior. And that is what our users have been able to publish and describe in the process of using our system.

So a couple, I also want to keep things brief and try to keep us on time. A couple of big questions that were addressed were really is the idea on track, does the vision make sense. To my mind I think yes it does. At least it really feels right. It feels like something we really want to be going towards and that is not just because our vision at Epic which is to change the way health care is delivered really fits well into this, the whole NHII vision. We fit very well into the provider side and we are also beginning to fit very well into the personal health care dimension that was described in there. We provide systems that support both of those sides quite well and do a lot of the communication that addresses some of the things that Eric talked about as being difficult. How do you get the information in and how do you facilitate the communication between the physician and the patient? If you have got a system such as ours, that solves it. And not to say that ours is the only one that does it but this is one way to address that kind of a problem.

I also looked at the vision from the provider standpoint to say okay, what are the real things that are driving the everyday user I visit. There is two things really. One is the hassle factor. Is this system that is going to be up going to make it harder for me or easier for me to do what I am trying to do every day, the minute-to-minute kind of things. Can I care for my patients more easily? Am I going to enjoy caring for my patients more? Is there going to be more forms I am going to have to fill out as a result of this? That is really the day to day kinds of things that drive us physicians nuts that we try to address and we try not to make it more worse when we install our systems. Those are the things that really drive providers crazy and I am no different than any of them.

It is how many phone calls do I have to take. How many times do I have to change the medical because the formulary, the insurance formulary says not because it is clinically different than the one I chose in the first place. Can I get home at a reasonable hour to see my kids, it is those kinds of things. Can I get time to focus teaching the residents?

That hassle factor, when I am trying to help design our systems, design our inpatient systems, designed our web systems, whatever, that is really one of the core things I try to look at because that is going to drive everybody nuts. And I will talk a little bit of the barriers that are mentioned overall within the interim report but also as they specifically relate to this aspect and which are going to be more important. And it will echo some of what John said in his introduction.

The other big factor that I hear a lot from the doctors, okay, that is fine, the hassle factor. I needed to worry about that but also I really need to be more productive and the hassle factor gets into that but if I don't see patients at a ceratin pace I don't make any money or I need to keep up in order to be able to, that our plan makes money or that I have a job. And if I can really just focus on taking care of the patients, that would be great. It is all those other things that get in the way.

How can I do it better? How can I actually in the delivery of the care, what are the tools that can make me be more efficient?

So using those two main drivers did I think the vision was on track, did I think the provider dimension was actually something that could be useful and would be something that everyday physicians would like. I still think yes, I think it really is on track and it is not just that provider side. It really, and I will get to this a little bit later. The provider and the patient side really create something more than the sum of the two sides independently and I will get to that a little bit.

The next section I wanted to address was what are the big things standing in the way of this? What needs to happen for this to go somewhere. And a lot of this comes from the efforts we have gone through in developing systems that actually try to meet the steps required to make the NHII real. A big one is standards. John talked about that. I it is not just standard but in some cases it is a big part of it.

We have had to develop around the problem. Other vendors have faced the same problem. We each in some ways have our own set of standards. We are building our system on, it makes communication difficult. Especially every one of our customer organizations has their own data dictionary describes their set of data. It may be very large but there are hindrances to even being able to communicate with a different customer of ours. Just because they have their own nuances, the way they handle the data diction. That is a challenge. We have enough customers that we are seeing patients leave one customer and go to a different customer.

How do we accurately get that information chunk to a different customer so that they don't have to recreate that medical record? Because it si not paper, it is electronic.

We can do the most part, we can do a reasonable job with the data we have in our systems but there is still not enough of a standard there to be able to communicate effectively across all the ways we want to. And the NHI I really gets at not having one big data base but being able to communicate and having a network for all this information that can make sense and provide decision support on something we know. That vital sign is that vital sign. It is not a piece of free text or it is not something else. That make this critical to be able to achieve this and I don't, everything we have been working at for years and this is really, people on this board know this a lot better than I do, the efforts at standards have been going on for years. I don't know that we see an end immediately in sight. This may be the rate-limiting step on getting to a lot of this, at least from the provider's side.

Another one, and I think this goes to what John talked about, it is not just standards. We need a critical mass of providers using systems. Until we reach that point, there is nothing to communicate. There is only a limited, like I said, at Epic we are only beginning to see the issue of needing to communicate that from one customer organization to another customer organization.

Until there is a real critical mass and the problems that are solved in getting to that point, the raw data that would be communicated and everybody could take advantage of is not going to be there. All the rest of the barriers really stem with how do you get a critical mass up and running. The biggest one is cost right now. It costs a lot to put these systems in, it costs a lot to train people, it costs a lot to support them, and at this point it is happening in dribs and drabs. Slowly, slowly folks are coming up on electronic medical systems. And it is not just us. We are doing, we think, a decent job at it but we are certainly not Microsoft although maybe we would like to be depending on the day of the week and the stock price. We are private so that is a little different. But the point is, it does cost a lot and our customers really only are large, successful organizations who can afford it.

Until this reaches the point where an average practice can do it in a way that it costs a little bit and maybe the ASP, that is what everybody is talking about, is the solution, maybe it is not. It is not clear that we know the answer either. Until it can be affordable on a month-to-month, year-to-year basis for a small dot practice, it is going to be a long time before this really gets up and running and there is a lot of folks, that critical mass is there and that is one piece of the cost side.

The other part of it is that while the NHI talks about the desire really is to capture clinical information for the benefit of clinical information because we know, deep down we all know that that is going to make a big difference in the quality of care, all the current justifications for putting these systems in or at least the vast majority are how much are we going to save? Where is the ROI? That is a limiter right now. We all know, at least on the provider side, it is going to help me take care of my patients and the folks out there who have used our system can say that, too but until we get past the, or can have better means for showing the financial justification of softer issues, cost will remain a problem.

Security is an issue. I think Eric and Ron have talked about that a bit and we are going to hear more about that.

From the provider's side, it is kind of like I want to be able to get the information when I need it, otherwise I really don't want to have to worry about security. I would rather the system handle it, the technology handles it. I don't want to have to worry that patient confidentiality has been broken because in the vast majority of doc's cases, the heart is in the right place. They are not going to go about conveying information inappropriately. If the tools are right, then from a provider standpoint, it is not as big deal. That is not to minimize the issue. It is a huge issue. It is just that the provider doesn't want to have to worry about it I don't think.

There was another interesting comment Eric made about content on the web and ownership and I think really that is a big deal so it is not, the ownership of that medical data and the security of it is not being used for web marketing research purposes which it seems like that is the biggest case. I think there was another article in Consumer Reports a couple of months ago that described bow very poor privacy notification, I don't think is was Consumer Reports, but recently another article, they are not very good at describing what the data is going to be used for and as a result it is a huge concern and it just adds to the public's concern about what the data will be used for and that cascades down to the everyday doc in the trenches who has that same concern because their patients are worrying about it.

A couple more points. We talked a little about the cost usability there as well and that goes to the cost of training. It is a little bit more minor but the point is, and it sort of goes to the technology solution will come along. As all these interfaces get tweaked and people find easier and easier, more intuitive interfaces, Palm Pilots, Windows, browsers. Palm Pilot is the latest one. Our president is big on that, she thinks that is the greatest thing ever and it is very intuitive.

Our goal really is to incorporate all of these different tools into a user interface that is easy and intuitive and frankly, that is where it is going to fall on the vendors to solve that technology solution, to bring that cost, the barrier down and I think we are getting there and I think the competition, all the dot coms and everybody else out there are bringing to this, will continue to push us to that point.

I think that problem will solve itself sooner than the standards issue.

The other one there, another big issue, is a cultural traditional impact issue, sort of the way I think about it. Physicians see themselves as a custodian of the record and the patient, yes, they have access to it but the concept of the personal health dimension and that the patient has access to the data and can have security or authorization data down to the point of each data item is a change in the way we think about medical records. That will be a barrier. I am not saying that is bad. I think that is a great thing that patients will begin to have much more empowerment and involvement in their medical care. It is just going to be a change for the everyday doctor in the way they think about the medical record, in the way they think about communication of data.

The final big point with the way this is going to happen is what we think of as enabling movement. Something has got to happen. Something akin to the IOM medical errors report or financial management or some kind of enabling movement is really what it is going to take to get this all moving in a direction. Something that in some way takes care of these different items, different pieces of barriers, of blockages, and makes everyone really want to move in this direction. It gets past all the little things that get in the way.

That kind of thing will tie right into this vision so that people will see, okay, here is the reason we need to do it. We have to do it. That is what we are seeing on the sales side with the medical error report. People are saying we need this system now. We need it for physician order entry because of that medical error report. That kind of example on a bigger scale will drive people much more critically into this to develop that critical mass of users.

I think from there it goes without saying that who needs to be involved is everybody. The government will need an involvement in standards definition. Provider groups obviously, vendors will play an involvement in the functionality. Someone has got to pay for all this. It is going to be a combination of health care organizations. Maybe the government will have a role in that and certainly patients and patient groups who have a bigger and bigger involvement in the whole consumerism side and how that works.

I will conclude with my opinion that I think the interim report really is on the right track. It really describes a world in which I would like to practice medicine. I would like to be a patient. I don't know how long it is going to take to get there. The biggest things are going to be the standards, the costs, and maybe this, in some kind of enabling movement. I don' FACE="Courier New">t know what it is yet. Maybe those with more perspective in this industry can describe what they think that might be but when that comes along that is what might drive us to finally have the NHI vision implemented.

Thank you.

[Applause.]

DR. LUMPKIN: Clem?

DR. MCDONALD: A couple of questions for the last speaker. You said the most important thing on your face is, I couldn't hear the word. It wasn't web, it wasn't -

DR. ALBAN: Oh, a composite. It is really going to be a merging of technologies to find, perhaps the analogy is a word processor, Microsoft Word. There is a lot of different ways of doing something in there. What we are finding is that we are going to be combining some of the Windows kind of interfaces, browser types, Palm Pilots. We are going to use all of them to try to identify the best user interface and really the advantage of a lot of competition in the industry is everybody is finding something different and we all get to try, and the winner is going to be something that really takes advantage of and provides a multitude of ways for any individual user to use these systems, to make it easy. They go up to it and it is obvious, whether they are used to windows, whether they used to a Mac, whether they are used to a Palm Pilot, whether they are used to a typewriter. Something that makes sense and that is where that sort of composite sort of technology is going to be.

DR. MCDONALD: I had not heard that. The other question is you said the standards problems still remain and I am sure that is true. But I wonder from you, as a vendor's perspective, how much of those standards problems is being able to get, the HL-7 messages are not all legal. People cheat. How much is it that the codes are not standardized anywhere and how much of it is just globby pre-text?

DR. ALBAN: For the most part, there is a fair amount of actual discreet data that we use in our system. There is a fair amount of free text, probably 30 percent range and that is variable depending on the specific tools folks use in our system. The real key is that every organization can define here are the discreet things we want and they are going to vary and if down the road they are using a different system, their map is different than ours.

The need to have to create those interfaces every time you try to communicate is a challenge. We have built lots of interfaces and no interface is easy, even if it is the same relative one for one customer as it is for another. No interface is easy. The more interfaces you have to build, the more difficult this kind of thing is going to be.

I f everybody is using the same data dictionary, it cuts down on that challenge significantly. That is where the standard will enable communication much better.

DR. MCDONALD: So I take it it means the vocabulary problem is the biggest problem in some sense.

DR. ALBAN: It is certainly up there, yes, exactly. It is certainly going to be the biggest to solve I think.

DR. LUMPKIN: Jeff, I am glad you could finally make it. I heard you were waylaid somewhere in some airport. I'm glad you are finally here.

MR. BLAIR: I get to enjoy the friendly skies. Help me if I am not pronouncing your name correctly. Is it Dr. Alban?

DR. ALBAN: Alban, yes.

MR. BLAIR: I have a few questions related to cost and implementation in culture that I would like to understand better and I feel like you are especially well suited to help with this because I know that Epic has a reputation for being very careful for the way it installs their systems to really make sure that there is customer satisfaction. So number one, I think we all understand that hardware and software costs are going down over time. Could you give us a feeling, when you mentioned cost, the e-systems are expensive and I am not going to ask you to wind up giving a specific dollar amount but proportions.

In addition to hardware and software, there is the cost of implementation and the time for that and then you mentioned also the cost for training and cultural adjustment and the time for that. Could you help us understand that relative proportions of those costs, implementation costs, cultural change and training, relative to the costs for the hardware and software and the time to install these things.

DR. ALBAN: I may have to beg off a little bit on the answer as I am not directly in sales and don't have the best understanding of the dollars there. My understanding at this point, though, is that the hardware is often the most expensive side of this currently. Now, granted, the prices are coming down and also we are addressing the need to use other hardware media that has significantly decreased costs associated with them.

Nonetheless, at this point hardware is the most expensive. Implementation is a significant cost as well. Software is probably about the same or a smaller proportion. The software cost itself and the way we do it, the smaller proportion than the implementation costs. How is that for vague? Unfortunately, I don't know that I can give you anything better than that without specific numbers.

MR. BLAIR: I don't want to ask for anything that is proprietary but I think it would be very helpful because if it turns out that the implementation costs and the training costs are significantly larger, people can get a price for hardware and software. The other areas are less easy to quantify but from, there are those individuals that have indicated that in many cases the actual costs of implementation and training turn out to be even greater than hardware and software. Would it be possible if you could share just the proportions for successful installations with us and get back to us with that? That would be useful information for us to understand because right now I think everybody gets preoccupied with hardware and software and we may be missing a major part.

DR. ALBAN: Let me, I think the answer, part of it is yes, I think we can get you some of those proportions. On the other side of it is, in fact, implementation and training is a significant cost. It is also a time cost. A typical customer of ours that is very large may take several years to roll out throughout their entire organization. That is a large cost.

What we are seeing using our web is an initial approach that the user intuitiveness of that seems to be significantly improving that approach. We will see what the results of that are over the next couple of years. But in the classic model where we are installing a client server model that takes chunks of training over several weeks, for physicians it takes time from provider time, from nurses, from the whole office. On that level it has a significant cost.

MR. BLAIR: Let me ask you one other related question and that is for the times when you do have a client or customer agree to install an Epic system, I am sure that many of them ask for some indication of return on investment and what are the major aspects or functions or areas where you are able to convince them that there is a return on investment?

DR. ALBAN: Sure. We are seeing an almost immediate return on investment in terms of transcription. Transcription costs a lot. Using our system they don't tend to dictate.

MR. BLAIR: Replacing the cost of transcription.

DR. ALBAN: Exactly. So that immediately brings significant savings or significant ROI, usually within a couple months. Many places face a significant storage of medical charts. As they move to our system they are moving to electronic, away from paper charts. So it eliminates chart pull costs and chart medical record staff costs. Usually, and since it is sort of a soft number in that they end up moving into support areas or moving into other areas within the organization, as opposed to simply getting fired and you lose the cost.

Another area actually is on the clinical side, folks who impose some of the decision support are beginning to see closer adherence to guidelines which have a direct impact on cost of tests and utilization. That one we are seeing a little bit farther out as you get a critical mass of folks up in a different organization. It is not in the first couple of months going wide.

Those are a couple examples, not just administrative side but clinical as well.

DR. LUMPKIN: Kepa and then I think we are going to have to move on. I have one question after you and then we will move on.

DR. ZUBELDIA: I have one question maybe for all three of you. In the NHI vision we see these the dimensions that overlap and everybody has access to sets of data from the other participants. The community health dimension has access to some of the provider data and has access to some other personal data and my provider dimension has access to the other sets of data and still having a centralized data base.

That is somewhat different from the way we operate today. Today when a claim is filed, it is a copy made and we hand data copies, still going back to the source with all these copies that are always being updated more or less and probably going to be out of date so we are kind of moving ahead and saying let's not copy the data into multiple places. Let's use the original source. How do you see that working? Is that feasible or are we going in the wrong direction when we do this?

DR. BOBERG: I am not an expert in this by any means but my initial reaction is it is an excellent business opportunity, that there would be organizations whose job it would be to gather the information from the various sources, compile it and repackage it. And that would be one way of handling the fact that the data is always changing in the various places but there would be gatekeepers, if you will, folks who are empowered to grab and repackage and get back out. Maybe that is one of the government roles.

DR. ECKOFF: I think concept-wise it seems like if you can really make it work, it could have some advantages in having the best information at each place at the right time. It is probably complex and making it work may be a trick.

DR. ALBAN: Correct me if I am wrong. My sense from the NHI was the key really was communication as opposed to having it all in the same place so I am expecting with that that you are going to have the same information in multiple places. I think the key with that will be again it sort of goes back to standards, being able to communicate that in an effective way without interface barriers causing a problem.

DR. LUMPKIN: Thank you. I just have a quick question for Eric. There are two statements that you made. One was that you would tend to be disadvantaged in some other aspect, the Internet computers, they seem to benefit the most. And then the second one was that when the home page that an individual starts off on, if you give them a computer that has got the home page that is health related, they tend to start off there. Is that published anywhere? Can we get a reference?

DR. BOBERG: The first one is in review. The paper has been submitted and as soon as it is accepted I would be happy to share it. The other is very preliminary and has not yet been even submitted yet. It is from a study that is currently underway and it is probably the first 50 patients out of that study but very striking and we are going to try and write that up as we wrap up communication and get that published quickly.

DR. LUMPKIN: Both of those facts I think would be important for us in developing our report and our time frames are such that if they, when they do get published, if you would just send us an e-mail with the citation we would appreciate that.

DR. BOBERG: All right. I can talk to the boss and see if she is willing to share that pre-publication. See what I can do.

DR. LUMPKIN: And we would like to do both, both see the source document as well as being able to cite it. Thank you.

DR. STARFIELD: Can I ask a question about the personal health record? I understand that it is disease specific but what do you do with the increasing recognition that there is a lot of comorbidity out there, what do you do with that?

DR. BOBERG: So far we have handled it quite inefficiently in that we have developed, Say when we are developing the menopause module, we come up with something that is clearly usable in other modules. Then we adapt it and copy it to each module but it is as we create a new program and we discover that there is something useful there for other modules, we disseminate it across all of the platforms but we are now really just starting to grapple with the fact that women with breast cancer also may have heart disease or other things and how do we give people access to multiple types of CHESS modules without the redundancy that might take place if you just give them access to three different websites. We are really just beginning to grapple with that.

DR. LUMPKIN: Thank you very much. That has been very useful. Let's move on to the second panel, if you would come forward.

DR. FRIEDMAN: In John's temporary absence, why don't you introduce yourselves and then if we could get started with Dr. Bergmark.

Agenda Item: Barriers to Implementing a National Health Information Infrastructure - R. Edward Bergmark, Ph.D., United Health Group Corporation

DR. BERGMARK: I am Edward Bergmark. I am President and CEO of Upton and am very happy to be here.

MS. RADAJ: Hi, I am Marsha Radaj. I am President of the Wisconsin Health Information Network.

DR. MITCHELL: I am Joyce Mitchell. I am Associate Dean in the School of Medicine of the University of Missouri and Chief Information Officer for the Health Sciences Center at the University of Missouri. That includes hospitals and clinics in three schools and also Professor of Health Management and Informatics, University of Missouri.

DR. BERGMARK: First of all I want to say I thank you for the opportunity. I am very impressed with the work you have done and you are basically trying to untie a Gordian knot and so I make my small comments with the acknowledgement that you have got a remarkable task ahead of you.

I want to tell you a little bit about OPTUM(?) And what OPTUM is and why it is important to me and why I started it. My background is psychology. I started OPTUM 10 years ago because as a psychologist I realized that people had a broad range of problems and one of the reasons the whole confidentiality issue is important to me is because as we have developed OPTUM and grown it, we have expanded the kinds of services so if you look at the fact that we have, we cover a lot of people, we provide a broad variety of help but the most important thing as you look at this is that we provide help not just for medical problems or behavioral health problems but legal problems, financial problems, and they are all affected by different rules about confidentiality and what kind of information we can share and store and use.

The other really important piece I think about what we are doing is we want to provide information in ways that work for people so as we have expanded we provide information over the phone for immediate kinds of help, whether it is a crisis or whether the phone is simply the easiest way of getting information. We provide help in person. We have print, meaning newsletters and books, depending on what works well for people. We find that with an audiotape library available over the phone that people oftentimes with very socially sensitive issues prefer to get that information in a way that doesn' FACE="Courier New">t require them to actually converse with somebody and, of course, the same is true for the Internet. The wonderful thing about the Internet is that it allows us to provide enormous amounts of data that really cannot be effectively or efficiently provided through the other areas.

But as you may have noticed in the other slide, we are covering over 16 million people now so we are actually taking about 10,000 phone calls a day. So it is all geared to providing information to people in a way that works for them.

So it is very much tied in to what kind of information do we collect, how do we collect it, how do we share it, and how do we as individuals and as a society more broadly take advantage of all of the opportunities that it provides.

As I look at the initial kinds of issues that we are up against is that organizations are demanding more and more information but meanwhile the legal issues are becoming I think more and more complex. An example of that is, and they vary from state to state that we will talk about, but for example, if someone is abusing his, sexually abusing his eight-year-old child and tells his attorney, that is confidential. If he tells me exactly the same thing as a psychologist, it is not confidential. I am required to report it. To kind of give you an understanding of some of the issues.

It is also important to understand that the public, despite, and I don' FACE="Courier New">t think we will ever really achieve any kind of real understanding here, it really has no understanding of confidentiality. In fact, just in my own kind of unofficial studies when I have asked college educated people, can you define for me the difference between anonymity and confidentiality which I think is a fairly simple discrimination, most cannot make that discrimination so we are going from people who can't make that discrimination to now trying to understand all the various aspects of confidentiality and how they apply in very complicated settings.

So it is going to be difficult to manage the public expectations and, as I have mentioned, there is a broad range of understandable differences across the various disciplines.

We also find that the understanding of confidentiality between patients based on the kind of assistance they are seeking is very broad and very, covers a wide range, and we also find that professional ethics, that vary from profession to profession are a barrier to really understanding or coming to a broader agreement on what constitutes the right type of confidentiality.

What I think is really important, as I have noticed the changes, just in the time I have practiced as a professional, there has been an enormous shift, and I will argue that it is a very positive shift that has moved from a very individual centered concept of confidentiality to a much broader social concept of confidentiality and as we look at how people interpret their own ideas of confidentiality, if we look at a lay person, I think typically what they are looking at and what they believe confidentiality to be, is something that was probably more on the books 20, 30, 40 years ago without really understanding the way the laws and also the practices have changed over the last few decades.

What they really don't understand is there is a continuum. It depends on the behavior that is being documented and it depends on the kind of conditions that are being documented.

Additional barriers. As a practitioner, there are enormous barriers between, in psychology, for example, how do I build rapport, how do I build trust with a client and yet how do I at the same time make certain that I am adhering to my responsibility as a member of society and also my professional obligations to report certain types of behavior. We also find that in group therapy there are significant opportunities for breaches in confidentiality. As we think about how to collect these data, not only are we as professionals collecting data but there are a vast array of semi-professional or in some cases non-professional advisers who actually have access to an enormous amount of data but we really don't have a way of collecting it in any consistent or meaningful way.

When the community must be protected, we want to make certain that we break confidentiality as appropriate and so in that sense it is a barrier but as we find more and more information there will be more and more reasons to break it. I think what, as we thought about this issue organizationally and as I thought about talking with you about it today, what I see as the underlying issue is that we have the ability to collect data in ways that we have not had before. It will increase exponentially and our ability to analyze that data likewise will increase exponentially.

My own impression is that we are much better at gathering data at this point than we are at figuring out what to do with it. An anecdotal example, as I was in, I had to spend quite a bit of time not as a patient but with a family member in an intensive care setting and they had this incredible computer capabilities to gather data and just for my own education I started asking every nurse, how do you like this system? Every single one, and I asked dozens. Every single one of them said, I don't like it. And I would say, who likes it? They said, well, the nurses that don't like actually spending time with the patients like it. And I said, well, so if nobody likes it, why do you use it? And they said, they want all the data.

And I said, well, so tell me, basically taking the Colombo approach, so what do they do with the data? Every single one of them said, I have no idea.

So it is, when you look at the opportunity or I as a researcher look at the opportunity that provides, there is enormous opportunity there, I think, to go back to those nurses and to really begin understanding what works, what doesn't work, so it is not an indictment of the data but it is a matter of it is not just a matter of collecting the data but what I am interested in is how do we tie it back, how do we change behavior, how do we communicate with people, how do we make peoples' lives better. So it is a matter of how we get that data in a the system and how we do it in a way that is meaningful.

But then I think as great a Gordian knot as that is and as great a challenge as that is, the greater challenge is bringing about meaningful change and behavior change and obviously that has already been discussed some today and I am sure will be discussed at length.

We also know that there are ways that information is retrieved that we as professionals did not anticipate. I notice people writing. I have these handouts over here. If you want the handouts you can take them with you but I brought copies so if you would like them, feel free.

But the point is that we as professionals can't even begin to think about all the ways these data may end up being used and frankly I think we need to be honest with those whom we serve as we communicate about that because there are times when data can be pulled and can be pulled for legal reasons in ways that we have not originally anticipated.

As we have electronic data, earlier today talking about radiology reports and films, as we move toward digital data, I would argue, and I am not a lawyer, but I would argue that we move toward joint ownership or mutual ownership or some way of expanded ownership because to think of a medical record as simply a single physical piece of material that exists in someone' FACE="Courier New">s file, frankly is simply not the reality of today. Obviously, in many cases it is but I think we need to think very broadly about how we move data, how we expand it, and the issue of protection comes with ownership but we need to think of mutual ownership. But there are, because as we see in the music industry, for example, the fact that the data can now be so easily moved creates enormous concerns about ownership.

Barriers for managers are accountability. We know from looking at behavioral health and medical issues that managing behavior when there are problems is a particular concern. We also know that caring for people who are not able to effectively represent their own interests brings about major confidentiality issues. Oftentimes we have to consult others so as we think about what data we store with those, we need to think about the best interests of the individual.

And then there are, as you can see, there are a few special settings, small groups and other kinds of public exhibitions.

As I mentioned earlier, there are again those issues where people are in one way or another not able to effectively represent their own best interests and we need to make certain that the confidentiality issues are attended to.

I have to say as a psychologist this is one of the things I have noted significantly. I think oftentimes professionals choose to work under a veil of secrecy because they don't let other people se what they are doing and as we look at the societal interests and the individual interests, frankly I think professionally we need to pull back the curtains a lot more and yes, understand that individuals need protection and need confidentiality but more broadly understand that we as professionals need to be not only held accountable but I think held accountable to a consistently higher standard.

We also need to make certain that when our own clients are, for example, engaging in sexually irresponsible ways and giving other people diseases, we need to make certain that we have the tools in place to at least try to manage that kind of damage.

Forces that currently enhance confidentiality, I want to look at some of the positive straits. I think the Hippocratic Oath is sort of the initial statement about how we try to protect the privacy of others but as we progressively become a more complex society, we need to look much more clearly at how we protect society at large as well as the individual.

When we do clarify confidentiality and again for personal reasons I have had more than my share of opportunity lately to sign hospital forms and medical forms, and they want to make, the lawyers want to make certain you understand in every way that you are responsible, they are not, and they can turn over the information to anybody for any reason they choose but I look at it and I say I got through high school pretty well but when I think about a lot of the people that I see also in the hospitals trying to understand those points, it is written in a manner that is completely incomprehensible I would say, easily to 75 percent of the population.

Sao it is a gray area and as we talk especially about vulnerable people, it is not the area that is of interest to them at the time we are communicating to them. It just comes back later on sometimes to haunt people.

So in terms of solution, I think we need to understand that in a public relations kind of environment, personal privacy is getting a lot of press these days, whether it is financial privacy, medical privacy, who is going to get the data, how are they going to use it, how are they going to steal your identity. So I think we are trying to go about having a positive social impact in an environment which frankly is kind of stressing the old wild West individualism approach I think so as you look at the 10 principles that I think were very well conceived, all of these are identified and more obviously in the 10 principles that you have enumerated.

I think it is useful for us to think about what is emergent and what is non-emergent in emergency situations. We really do need to at times respond in a very different way. I think we as professionals need to communicate that big brother is not always bad. That, in fact, by pooling data and gathering information, and we need to think about even in academic settings and training professionals and as we talked about confidentiality, it is not just a legal statement where I have to initial 10 things that again say you can use this data in any way. But rather we are able to accomplish things by making these data available that we cannot make, that we cannot accomplish without those.

So, in summary I would just like to thank all of you for your work. I think it is going to continue to be a remarkably challenging exercise. And if the rest of us can be of any help not only to your how to collect it but how to make use of it on the longer term, that would be wonderful so thank you for the opportunity.

[Applause.]

Agenda Item: Marsha Radaj, A.A.S., B.A., Wisconsin Health Information Network

MS. RADAJ: I am Marsha Radaj from WHIN, which is Wisconsin Health Information Network and I really would like to thank you for the opportunity to address the work group today. I commend you for the work that has been done. It is really exciting for me and the organization that I work with to be able to read something like this because at a very rudimentary level, we believe that we have implemented some of the strategies that have been identified in the paper to the extent that I even shared it with some of the people at work and allowed them to read it because it really identifies and articulates the vision that we have got as an organization.

For those of you who are not familiar with WHIN, we started in 1992 but we really had our seeds that were developed in the mid-1980s. In 1992 we executed a statewide study throughout the state of Wisconsin. It has approximately a five million population, 154 hospitals and what we did was we went around and addressed all of the gatekeepers, the stakeholders and health care and that included visiting nurse associations, imaging centers, hospitals, physician offices, et cetera.

We incorporated and brought forth in 1993 a product and we implemented our service. Now, we don't have a product that we sell so I can't address the costs and challenges specific to a product. What we are are really aggregators of service and we take a look at who the providers are, who our constituents are, identify what their requirements are and then look for the utility or the service and bring that into our network. I can address later on if you are interested in cost issues for bringing something like our network up.

Now, our mission when we were first formed was to lower the cost of the delivery of health care and the markets we service while increasing at the same time the quality. We believe that we have done that, the University of Wisconsin Business Research Division implemented an impact study approximately two years ago that identified that a solo practitioner could save approximately $7,000 to $10,000 a year utilizing our service if they utilized the service fully. An organization like Aurora Health Care who is our owner, the largest integrated deliver network in the state of Wisconsin can save a couple of million dollars a year utilizing the service and the utility that WHIN provides.

Over the last year and a half our vision has changed significantly. If you would have invited me to speak two years ago, there is no way I would have ever told you that we were going to meet the needs of a patient population. We were very focused on the provider; however, over the last year and a half we formed a relationship with an organization and are deploying systems that actually link patients to their records in their physician office and the whole goal and the premise behind that is bonding the patient to the physician that provides their care as opposed to binding them to the Dr. Kook dot coms of the world, web-md of the world, et cetera.

We believe wholeheartedly that health care is delivered locally, minimally regionally so you can provide that access to the type of service that we have. We have also added utility to educate. Educate patients through healthwise data base access, through CRS, through four year well-being documents, through some of our providers and other pieces of information or articles that are passed out either in a physician office that are provided by drug companies, et cetera. We move them into our network and make them available for other providers and for the patient population. We also educate through a relationship with them through healthstream. We educate employees on JCAH requirements and OSHA requirements and corporate compliance.

We are a for-profit company. We are very small. There are only 14 of us. And we are spread across all the type of capabilities that you need to run an organization. Our primary market, we are WHIN, is the state of Wisconsin, although through our relationships do have some penetration into Minnesota, over the border in Illinois and into Michigan.

Our competition, I brought this into the presentation because when you look at what the competition is of an organization like us, in effect that is the competition that will be faced by the deployment of a service or utility that the work group has identified. Competition for us are integrated delivery networks. There are a lot of networks throughout the state. There are a lot of payers and other constituents who believe that they can do things better themselves and don't look kindly at sharing information and collaborating with organizations that not so much consolidate data because we do not retain data within our network. We are a giant switch. Our infrastructure is eroding and a switching infrastructure that would connect you and a patient or a provider to the data that they need wherever that data is, as opposed to us building a primary repository that houses all of that data.

Vendors certainly are competitors of ours because vendors take a piece of what we do and serve that utility and they don't so much compete with us on the utility that they provide. They compete with us because they install proprietary pieces of equipment with the directive given to those providers or users of that service that says you can run no other service or utility on this device. That contributes significantly to the cost of deploying information that our network would make available so we are back in many ways in a number of offices where I found myself in the early 1990s which in some cases was as many as five devices sitting within a physician' FACE="Courier New">s office - one spitting out lab results from a lab, one hooked up to an integrated delivery network, one hooked up to another hospital, et cetera, et cetera. One running a practice management system. Certainly information providable over the Internet competes with what we provide. Again, being that our market is providing high quality information that allows a provider to be able to print through contracts with WHIN. We can do that with the varied groups.

One of the things, and because we are talking today about security related issues, when we first, when WHIN was first started in the early 1990s, I didn't give a presentation where I didn't get five minutes into the presentation and someone was raising their hand talking about security and from that point on, the majority of the presentation centered around security-related issues. I don't have that problem anymore. In fact, in most presentations that I personally give, I have to bring up security because the providers that we work with and even the consumers that we work with tend not to think as seriously about security as we do as an organization but to give you some idea on what we do, we use technological security, we use manual security. Our network consists of provider, large hospitals that are making information available that is in their hospital system, such as lab results, all the clinical reports, demographic and payer related information, the postage charge summary which has all the billing codes in it. All of the postage charge abstract. All of the physicians associated with a case. We go right to the hospital systems and tap into those systems and pull that data out. We also connect directly to lab systems and pull out specimen information and make that available to other providers. All of the information flowing to us from one of our providers flows over a direct line. Most of them have T-1 lines, T-3 lines. We are in the process of implementing framed connection. We use, and I can't speak to any great depth on the technology. I can tell you that we use 128 bit encryption. We do use certificates. We also certainly have log-in IDs and passwords for the very functions that you may have access to.

We also have manual processes in place. If a physician comes to us and says they practice at St. Luke's Hospital in Milwaukee and would like to receive results delivered directly to them, we go to St. Luke's Hospital and we ask for written authorization from the hospital before that physician ever has access to anything through our network.

We control what appears when that physician logs on and if they have access to two out of the 20-plus hospitals that we service, only those two hospitals would ever appear on their log-in screen so they cant gain access to it.

We believe that we are secure. We do have audit trails that print out that we provide to all of our information providers so that any point in time as a provider you know who is looking at what piece of information, what time they looked at it and in effect we have assisted some of our providers in identifying security breaches within their organization. Granted that that is an after-the-fact identification as opposed to at the point that it occurs; however, we believe that we are much further along than most organizations are and just two weeks ago we had lab result spit out in our office on a fax machine that was for one of our employees who had some testing done and the person that sent it sent it as opposed to sending it to her primary care physician and ended up sending it to her work fax number and thankfully she was the one walking past the fax machine when the darn thing spit out.

But it just identifies for you the types of things that happen and how very easy it is in a non-automated environment for security to be breached.

Some of the things that we face on an ongoing basis, certainly our costs. Infrastructure costs, the costs of deploying or bringing up our network. Now, when you look, and you have to put in context what I am going to tell you because we are a network servicing payers and providers, we are not selling a practice management system that might require a server that could be anywhere from $20,000 to $150,000 probably. To deploy network throughout the state a number of years ago required an investment of approximately three million dollars. We are still operating off that infrastructure; however, as new technology becomes available, we have certainly added new components. One of the challenges that we face is maintaining our technological edge. It is very easy to become complacent with the type of gear that you do have in place. It works. It meets the current needs, but the bar is ever rising. We know that as soon as we buy a PC for our home it is already outdated the day that we unbox it.

And so as an organization we continue to face those challenges and have technical function that continues to look at making that available.

More important than the hardware in my opinion, however, is the education, is the role out. For one of our services, our patient access service, all it requires is a PC in the doctor's office and 15 minutes worth of training that I can do remote. I don<'t even have to appear at the office to train that office staff on that particular function; however, if I am doing training related to connecting to all of the commercial payers and our state Medicaid and doing auto-eligibility through the admitting department through an admitting work station, and connecting you to all the common working files for Medicare, then you are talking a significant investment in training.

If we are in a situation where we are training 50 nurses at one time when you talk about the hourly rate for a nurse and 50 nurses brought together for a training class, that is a significant investment on the part of one of our providers so cost is certainly an issue. We see costs going down. More important than the hardware for us are the communication costs because the more information that is available, 24 baud modems are the way of the dinosaur, however, we still have some offices that when we were doing Y2K analyses and upgrades, we still had to address those needs. We still had offices running the old IBM ATs from the 1980s.

We talked a little bit about well, is it the cost of this service that is too much, the cost from the provider. We can provide patient access to a small office for as little as 50 cents a month per patient. However, more than the cost is everybody thinks they should get it all free so it is not so much what the actual cost is because based on what you get in most case you would consider the cost very insignificant but what we continue to challenge us is doctors believe that they have a right to the information that the hospital has and so the hospital should pay for the physician to be able to get it. Not only should they buy the PC for the physician but they should pay any communication costs associated with it. That is one issue we face.

Payer organizations belie that the payer, the plan should pay it so they charge per member per month. The visiting nurse association believes that the patient should pay for it. The patient believes that someone else should pay for it. So it is that ongoing bickering back and forth. We continue, we are very fortunate in that our owner is an integrated delivery network who sees the value of the network and so our mission in life although our mission is to always be in a profit mode and to never go in the red which we don' FACE="Courier New">t, our mission in life is not to produce a million dollars in that income at the end of the year, it is only to stay above the zero mark. And so we are very fortunate in that we can provide our utility very cost effectively and I think it is one of the reasons why the University of Wisconsin study was so favorable when it came out.

We wholeheartedly believe that what the workgroup has identified is the future of the delivery of not only the delivery of health care but the delivery of service of this type of product and it is one of the reasons why we formed a relationship with the company that connects patients to their physicians and what we do is we deploy a service that connects directly to practice management, clinic management and hospital systems so that whenever I as a patient log on to that network, what I am faced with is a Marsha, here is some information that your physician thinks would be beneficial to you. Now, that information is all based on the ICD-9 codes that are in my physician' FACE="Courier New">s office, that are in their practice management system. So if I am being treated for hypertension or obesity or I am having gall bladder problems, no matter what the ICD-9smight be, that data is actually pushed out to me. I am not in a situation where I might be out on the web actually searching out this information, sometimes getting good data, sometimes getting bad data.

Another thing we allow them to do is not so much maintain a, although that will come in a subsequent release, a personal health record, but what we allow them to do as parents for their children, whenever children go into a practice, when I am all done, everyone that I am a caregiver for is presented. I pick one and if it is a small child, there is a chart of all immunizations. ICD-9s don't differentiate between shot one, shot two, shot three as you might know so that would be an ineffective way to communicate data to me.

So what we do is we push the chart out and we fill in when those tests are done. It is better than nothing so we do have a long way to go.

We also use it for maintaining camp forms and health risk assessments. A patient can log in, too, through a connection to our payers and get access to co-pays and deductibles and outstanding balances on any records that they might have at the payer who is responsible for actually paying that physician or that provider so in a very brief amount of time those are some of the things that we are doing, some of the issues that we face and I would be very happy to address any individual questions later.

I do have some literature on the table that really summarizes all of the different capabilities including all of our payer capabilities that we provide through out network.

Thank you.

[Applause.]

Agenda Item: Joyce Mitchell, Ph.D., University of Missouri

DR. MITCHELL: Thank you. I am Joyce Mitchell from the University of Missouri and I, too, appreciate the opportunity to speak to the panel today. I think the report that you have done is very well done overall. The key concepts are well formulated and I commend the committee members for good thinking, clear writing and also the opportunity to have feedback in such a manner throughout the entire country.

I have been specifically asked to focus on the political, social and economic barriers today. I would like to make a few comments about the report globally and as some of the other speakers have done, I have wandered into some of the other dimensions but do have focus on those three specific areas.

I think that there is no part of the report with which I would take issue because it is really well-conceived. Other than the caution which you have heard from other people that it will take many years to have a fully formulated and functioning NHII across the United States and the entire health system and I think the barriers that you are hearing about are really pointing out a fair number of things which will take a long time to have implemented.

Building on the excellent vision that you have put together, I think the goals are stretch goals. We are doing re-engineering in our system where you talk about stretch goals which are things that go way above and beyond what you are comfortable with in your particular lifestyle right now and I think that is what your committee report presents.

I think they are doable in the long run but it also means that each part of the health care system would need to do a major rework of their daily processes and businesses in order to fully participate in attaining the vision. It is attainable for those institutions and sectors who put their collective minds to the tasks but it will move people out of their comfort zone at least in the short run if not in the long run.

Most barriers are political, social and economic and not technical but I think technical is difficult to divorce from the social or the economic in particular. If your future is envisioned well, all individuals living in the US will have access to a computer connected to the Internet, then this is maybe a laudable vision but it is a combination of technical issues and infrastructure along with economic and social that makes this a challenge to reach the 100 percent connectivity point. I think you will get to a significant connectivity point rather soon throughout the whole country. You are seeing that happen spontaneously. I think getting to 100 percent will be a very difficult thing over a short period of time.

I appreciate the viewpoints from the three dimensions, the personal health care provider and community health care dimension but I suggest that there are a couple of other dimensions that you might think about along the way in order to see the full set of dimensions of the vision and its benefits.

I suggest that the dimension of the health care payers, both the insurance community and the government agency such as HCFA might be added to this since the behavior of the health care provider institution is oftentimes a direct response to the payer requirements and I harken back to the comments that were made earlier today about how much time did the payer organizations spend talking about collecting HEDIS indicators and I would suggest it is a much smaller period of time than they do paying attention to claims rejection.

So you won't get the provider communities to really pay much attention to it unless you have an alignment with the payers as well and a significant part of that is Medicare and Medicaid in the government.

The other major dimension which could be added to is the dimension of the clinical research community. You certainly talked about health care statistics this morning but what I am being struck by and my background is genetics so I tend to be struck by genetics on a regular basis I suppose but there has been lots of press about genetics these days and the human genome project and I believe that the human genome project and the promise of genotype-genotype match, designer health care, is going to transform the health care industry so much over the next decade and certainly over the next century that more attention needs to be paid in your report to what is social aspects of that and how the research community is going to get access to the data in a way that will benefit everyone.

So I think it is, what you are seeing is a convergence of the power of computing with the enormous data bases of biological diversity, individual variation and you also will see the need for more and more direct health care information in order to have all these come together and we will transform health care.

The section on what stands between the present and desired future is excellent. You have a list on page four and five on legal, societal, organization and cultural barriers. I thought it is well formulated. If anything it is understated. I think there are large barriers. Certainly most barriers are not technical as long as you have the capital investment being made in the technical infrastructure including attention to security systems and I agree with the former speaker that security systems you can pay attention to but it takes attention and capital in order to make it all happen.

So the conclusions reading this list of barriers is that the NHII will be achieved rather simply and I put simply in quote by changing the culture and the behavior in the entire health care system. That really kind of gets back to the whole idea of changing practice behavior and changing lots of behavior along the way.

If I focus on political aspects, for most large businesses including health care businesses, organizational issues relating to changes in the way business is conducted are numerous and the resistance to change is very real.

These are internal politics and they are usually the largest barriers. Most academic health care organizations and integrated delivery networks are facing challenges to their cherished way of life, not unlike the pressures faced by many other industry sectors that have become dinosaurs of antiquated processes in thinking and that is not saying that the way we practice health care is antiquated and a dinosaur. I believe we are doing top notch health care. I think our business processes are antiquated and they need changing all the way around.

We have become very complacent that we are in an industry that was making lots of money and it is rapidly changing at this point and the whole industry is trying to react to that. The University of Missouri, like most academic health centers is doing major rethinking processes which are related to the revenue cycle which includes registration, scheduling, coding and abstracting of billing and also the clinical processes which includes the access to patient information, placing orders, retrieving alerts and reminders, using protocols and guidelines and tracking clinical outcomes.

It includes considerations of patients, interacting directly with systems and full use of secure Internet connectivity and one comment that goes back to a previous discussion is that we recently replaced all of our old systems for billing and clinical care and the cost of implementation and training are fully as much as are the cost of the hardware and software and the internal change and adjustments necessary to make it all happen, if you could quantify them somehow, are more than the cost of the hardware and software.

Now, it is a lot of work but you can build your information systems to fit whatever process you want. But once you have a decision about how to redesign the work but it is very difficult to change the very nature of the clinical process and that is what is talked about in our previous speaker changing in the way that you have your practice patterns happening throughout your whole institution.

So it is usually not the physician or other staff that do not want to consider alternatives and, in fact, I know tons of physicians who would like to do things differently. They notice that things are not going well and they are spending a lot of their time doing administrative work but it is really the fact that the pace of health care and the administrative paperwork of health care has sucked up all the available time and when you are in the middle of the kinds of pressures to see a patient every eight minutes, you just dont have the time to stop and say okay, let me analyze how I am doing my work here. We heard those kinds of comments before. They are true situations.

More than that, institutions need strong internal leadership to make the changes necessary to transform their institutions so that you can fully participate in this information rich environment that is part of the vision of the NHII.

And the challenge when you are up to your waist in alligators, it is difficult to remember you came here to drain the swamp. It is, in fact, an apt adage for the day to day life of health care and crisis management which is what is led in most health care provider institutions.

As we stated before, you have to really get to the CEOs of your health systems and you have to link it to their success in order to have them all get on board with will the NHI be a benefit to them.

If I switch a little bit to national politics to internal politics, I believe one of the largest NHII political barriers is the slowness with which the HIPA regulations have been promulgated. It is very difficult to get institutional leadership to commit scarce capital, to take standards, privacy, security serious when promised federal rules take years to emerge and every published deadline is delayed. No deadline has been met so far although we keep hearing it is close. This is directly under the control of the Secretary of HHS. It should be expedited not only for credibility but also to speed up the process of the NHII and administration simplification overall.

I was heartened that President Clinton signed a national digital signature law in June which could be used for leverage to publish the HIPA security regulations as a start.

The privacy concerns that we have heard about on several occasions today create large political and operational barriers and need to be tackled by federal regulations. The concerns of individuals about privacy are real in the electronic world but I would agree with previous speakers that they are oftentimes used as an excuse for not sharing information or perhaps hiding behind some clinical malpractice issues or other issues which are perhaps a screen for internal behavior problems.

But once again I think the Secretary of HHS can help with the process of aggressively pursuing the HIPA regulations with privacy so at least we have federal regulations across the country.

The policies of urban versus rural America I don't think we have heard a lot about. We did hear from the person from Alaska today. Missouri is a state where we have got a big population center on the east and a big population center on the west and all of the area in between, it is kind of a rural America. Getting needed health care services to the underserved and the socioeconomically deprived parts of our state is a very formidable task, let alone getting the political support for paying for those services.

We have many years of experience with telemedicine and with rural clinics but we can't find the telecommunications infrastructure to connect remote clinics or if we do, the costs are exorbitant. We had a National Telecommunications Act of 1966 with the Universal Services Act. That assists with favorable rate structures for remote locations but it does not encourage the development of new infrastructure and so there remains inaccessible portions of our state and until you get accessibility throughout the entire country, you will not get the whole NHII throughout the entire country.

We have other restrictions. The HCFA restrictions on billing for telemedicine visits is a direct hindrance from providing care for remote locations and this is another example of the payer rules which influence or inhibit the provider community from moving towards the vision of the NHII.

A scenario once again from the payer dimension would assist with the overall vision of the NHII that we have put forward.

If I turn my comments to social, I have three major social issues to discuss. The first one is, has been discussed a fair bit, the whole idea of standards. I think there is a fair bit of work on standards. I would agree that it is going much more slowly than any one of us would like it to go. It is difficult to figure out how to make it go too much faster, but I do believe that the major government health agencies need to take a more leadership role in order to overcome these barriers and I think you have to fully engage in health care software and hardware vendors in all levels of the discussion so that they are given a voice and see the benefits of their business. I was heartened that we had some folks from the vendor community, and I think there are ways of making money and it can be profitable in this whole arena so that they need to be part of developing the vision.

The second social point is that health care consumerism is a major point. It is shaking health care in our future and I really see this as the growth of our world wide web and Internet which is very much talking about the personal dimension of health care from a somewhat different point of view. Not those that don=t have. Those that are out there developing the chat rooms and shaping the point of vision of where we are going.

The Internet and the availability of health care information, disease-specific chat groups are leading towards a consumer revolution and it once again is going to change medicine. I think that the paying customers are taking their health care business to those providers who can demonstrate the best clinical outcomes at the best price, give good customer service and have an Internet presence with electronic follow-up.

I think you are seeing consumerism shape health care in a way that it has not been before.

It is happening despite the general non-participation of many health care providers and payers but it needs to be embraced by all parts of the health care world and shaped according to the vision of the NHII. Otherwise the consumer revolution could lead to duplication of resources and data bases and fragmentation of data. It certainly won't lead to standards or any kind of aggregate data possibility unless it is assisted in such a way that it goes along with the vision of this report.

The third social issue really talks about the human genome project and the scientific momentum I see shaping our world. I mentioned this briefly before but I really believe this is an unprecedented kind of movement that is going to happen. The fact that the President announces that the human genome project is over, it means that the initial sequence has been created but the human genome project is now launching into how it is going to shape health care in the future.

And it will chance health care. I think the pressure to use genomic information to design treatments specific to diseases, individuals and families will cause social changes very broadly. It will probably cause longevity to increase dramatically, may alleviate pain and suffering, in fact, I think it will but I think it is unlikely to cause the overall spending on health care to decrease. The pressure to use clinical information for research will increase and the need to link clinical and genomic information to study genotype and phenotype correlations will explode.

It is likely that genomic information on individuals will become a routine part of the medical record, either in part or in whole, in fact, I think it will start out and creep a little bit at a time and then eventually your genome and all of the sequence data will simply be part of your record. I guess one specific comment will be that the report should mention something about genome data being part of the core content of the patient record. I don=t know how fast it will happen but I am pretty much assured it will happen. The century ahead will likely be the century of biological and medical breakthroughs just as the last century was the century of physics and astronomy.

The Internet revolution needs an additional dimension to be added to the scenarios of the NHII report. The scientific researcher who needs access to genetic data bases and biochromatics tools located around the world will also need access to various types of patient and human population data in order to determine what is going on specifically.

If I address the economic barriers, third, there has also been a fair bit of discussion about those already but this is going to cost a lot of money. There is no way around it, and it must be a public-private partnership and it will be partially consumer driven but it is coming at a time when health care institutions are reeling from the effects of indigent care, managed care, balanced budget act repercussions, rising administrative regulations and the impression that the payer community is just looking for reasons to deny payment of claims.

The national economy is growing strongly. The international economy is picking up nicely. The US health care industry is in a recession that only promises to get worse before it gets better. The health care industry must do what other industries have done as it relates to prioritization, streamlining and reinvention but it will remain a difficult time to pony up the investments needed for transformation as is envisioned in the NHII report and the whole discussion about return on investment is the only discussion in many institutions that really holds any water these days.

So my suggestion about the software vendor involvement and DHAA leadership that is done federally can help shape this whole thing. The vendors tend to compete against one another instead of pulling together and saying how can we make a national vision a reality, but it really is the case that I think there is enough money to be made on all sides that it is worthwhile, it is necessary, it is essential to engage all the stakeholders including the vendors in making this a reality.

I also think there is a need for grant funds for demonstration of pilot projects and, in fact, the infrastructure could be partially supported by the government.

The personal socioeconomic dimension will remain a challenge to our society. I doubt that all people will have an Internet-connected device in their home despite the consumer revolution alluded to earlier but I hope all people have access to their schools, their churches, their libraries, their health clinics, their data base, their work, their day care, their employers, et cetera. I think the challenge will be to fund these devices and encourage their use and to train people in their use by all.

I have, as a summary, four major points that I think should be added or at least considered to be added to the report.

The first is to add a view from the dimension of the researcher and also from the payer community or consider the three existing dimensions to include components of the genetic research viewpoint and also the payer communities but to flesh those out a little bit more.

My second overall point is to involve the health care software vendor community more in the planning for this future so they can participate in the benefits and also the results and to perhaps view this from the electronic commerce movement so that they can see that there are multiple opportunities in markets which have been a non-traditional.

My third point is to consider government investments in the NHII but make it easier for the providers to see the benefits of participating and making the vision of the NHII into a reality and to consider grant funds for demonstration projects for a specific component of the vision and I believe somehow you have to get over the fact that the health care industry is in a recession. The provider industry is in a recession in order to get the economic stimulus to get you over the hump so you can go forward towards the NHII.

The fourth point is really political. I suggest that the HIPA regulations be published as quickly as possible and follow up with actions to show the government will enforce the regulations, to erase other federal barriers to telemedicine in remote health care and use the Telecommunications Act and the Universal Services Fund to encourage the telecommunications infrastructure to be expanded and reach the remote environment.

That is the end of my comments and I thank you for the opportunity to speak today.

[Applause.]

DR. LUMPKIN: I would like to thank the panel for some very thought provoking comments. We have time for just a few questions because we are running very late and we are going to start running into peoples' planes leaving. So do we have any questions? Kepa?

DR. ZUBELDIA: This is more for Marsha. Most people when they think about the NHII including probably most of us when we think of the NHII, we think of the Internet-supported NHII. The Wisconsin Health Information Network, the Net-net in Minnesota, the Utah Health Information Network, those are private networks. Could you tell us a little bit about the advantages or disadvantages in todays day and age, not 10 years ago when it started, but today, on going with the private network over going with the Internet. Maybe we can also address costs because that is something that Joyce is very concerned about especially because of rural areas.

MS. RADAJ: We are really a combination of intranet private network services and Internet services so we go either way. Really what the differentiator is is clinical access. The hospitals we work with are incredibly conservative in the state of Wisconsin and although our network is Internet ready for allowing clinical Internet access, they have chosen to provide their data over our intranet so it is mostly a provider led initiative as opposed to one from WHIN.

For us, what we do is the network has been designed so that once you are within the WHIN frame, you can go out to the Internet, you can come back, you can just jump over without having other log-ons, et cetera.

So what are the benefits of one over the other? Definitely I would consider security an issue today over the Internet for clinical access in some regard. The intranet is very secure in that it has direct, point-to-point connections that the data is encrypted and flows across. Once you get into the Internet world you can control the encryption to a certain point so security is one.

It is certainly cheaper to provide information over the Internet. That cost to the interface development, however, is the same whether you are doing an interface for Internet access versus an interface for our intranet access the cost would be the same and, to be very honest, the cost of those interfaces is a significant cost in the scheme of things because it is staff time and in the economy the way it is today with unavailability of staff with the salaries that are paid approximately 60 percent of the cost of WHIN is staff cost as opposed to communication cost, infrastructure cost, administrative cost, et cetera.

Does that answer your question? The look and feel, I mean, probably the tools that are available for Internet development contributes significantly to ease of use, et cetera, over and above the tools that we use in our intranet so that would be another.

DR. HARDING: Just two brief comments. One was the general discussion about the convincing the population or convincing administrators of hospitals and so forth of the necessity to stay the course and keep working on the issue of electronic medical records and all the rest. It was interesting at my hospital which has about 1,000 beds and 10,000 employees went from $50 million top two years ago to this year it is going to lose $40 million with no changes in the hospital being full all along. The first thing that got cut was the new, computerized medical record that was being put in, feeling that that was a loser as opposed to a, in the long run, a winner.

How do we stay the course? How do we keep administrators and so forth with their eye on the longest and you have said, several of you, that it is pretty hard to drain the swamp when the alligators are all around you and so forth but that is going to be a real problem here during this recession that you were saying.

DR. MITCHELL: Well, I think you have stated the situation with most large, at least academic institutions is that the economic situation has just had such a drastic turn around over the last several years that even those places that really have their hearts in the right place and have put money down and started these long term projects are having difficulty staying the course. It seems to me like getting the CEOs of those institutions which probably means University Health System Consortium, it also means the AAMC, the AAHC which are all of the academic health centers and the American Association of Medical Colleges, all of those kinds of institutions need to understand why you would do this but more than understanding why you would do this, if there is not some kind of financial assistance at some level and I would suggest it would be at the infrastructure level or trying to see where the benefits are and they have to be fairly short term benefits. People are not able to sustain these large losses. They simply have to get their economic situation set in their institutions and that means cutting some projects which are clearly near and dear to some peoples' hearts. You don't know what that is going to be.

MS. RADAJ: I think that the vendor community has to participate a lot more. Only three percent of institutions in the United States today have a computerized patient record in place and when you look at the vendors that are marketing those particular systems, in many cases they are still in alpha mode and the institutions that are buying them are under the assumption that there are products that are deployable and the costs are accelerating significantly and way beyond what a lot of hospitals had ever anticipated and so the negativism that goes along with that and the jump to move away from those tools happens much more quickly and I think the reason that is given is because of the cost. Had the product been there I don't know that the cost would have been such a significant issue.

DR. MITCHELL: But the cost has to go along with changing the way that you practice medicine on a daily basis so really the cultural shift that needs to happen, it is hard to make that happen when all of these pressures are coming to bear all at once.

DR. HARDING: I have just one last thing. I was called in to see my administration because there was a vendor selling a new product who said that it was 100 percent HIPA compliant and guaranteed on that and so he brought me in to talk to him. It was an interesting conversation. If that is being sold, that is a very strong selling point, HIPA-compliant.

DR. BERGMARK: I also think that at times businesses are forced to operate on a short term financial oriented basis and that is just a reality and I think that is where the public sector is in a position to create an environment and a level playing field so that, for example, whether it is HIPA or other standards, there are certain types of data that are required. You then require them of everyone and it is then up to each of the individual players to decide well, how do I actually perform that function. How do I deliver those data as required? But I think if we look at a lot of the issues in medical delivery today, there is not a good financial basis. If you look at medical devices, there is almost no follow-up on medical devices and how they perform, for example, because there is no financial structure to make that possible.

I think that is really where the public and the government sector can come in to take the much longer and societal view in protecting the interests of the larger population.

DR. LUMPKIN: And the last question from Jeff and we will have to move on to the next panel.

DR. BLAIR: Dr. Mitchell, very quickly you wound up making the comment that you felt that the bottom line is the return on investment. You indicated that you had been able to in your organization make the case to go forward. And you also made the statement that you did feel as if some of the less well-defined costs, implementation and change, you felt were, in fact larger than the more easily to define costs of hardware and software.

If you can share any of that data with us, that would help us a great deal plus if you could pinpoint those areas that helped you make the case for your organization and make the commitment to go forward, that would help, too.

DR. MITCHELL: I do have some data on our specific project. I don't have data globally across the whole country what it would cost for these things.

DR. BLAIR: We are short on time so I didn't expect you necessarily to provide that right now but maybe you could send it to us afterwards.

DR. LUMPKIN: Specific data even, if it is for your institution would be useful because there is not a lot that we have that we can rely on.

DR. BLAIR: One of the things I would just like to make in terms of this is that vendors naturally are going to wind up with marketing their systems and they have data on what it costs for them to provide it. It is the providers in many cases that look at this and wind up saying yes, but what is it going to take for me to install it, how much disruption? How much work flow change is there? How much cultural change? Those figures are generally specific to individual providers and they don't get a lot of distribution and the vendors don't tend to pick that up because in many cases it makes it more difficult for them to market so it is really going to be helpful if we could get our hands on that because that is probably one of the major barriers to acceptance of these systems that we really need to understand that well if we are going to address it properly.

DR. LUMPKIN: Thank you. I would like to thank the panel very much again and let's move on to the third and final panel.

Agenda Item: Interactions between NHII and Health Statistics - Merwyn Nelson, Ph.D., Illinois Department of Public Health

DR. NELSON: I am Merwyn Nelson with the, director of the Illinois Center for Health Statistics in Springfield, Illinois, and I will be giving some of my remarks.

MS. LEIFER: I am Lauren Leifer. I am president of Compdisk. I chaired the National Business Advisory Council for Healthy People 2010 under the auspices of Partnership for Preen on and now there is a new program, the Partnership is putting on called Partnerships for Worksite Health and I also represent the National Association of Women Business Owners and just personally small business in general and I will be speaking about what I believe is part of the paradigm shift and how this is actually going to be implemented and maintainable from the user perspective.

DR. ECKOFF: Ron Eckoff, Department of Public Health.

DR. NELSON: I will be fairly brief. The need for re-engineering of our data collection and reporting systems in Illinois is long overdue and in process and so as I reflect on some of the findings in these two reports I will comment on those.

In the principles of the 21st century, they noted that there is a proliferation of standards which developed or started in this last decade. I would take exception to that. I think that proliferation of standards has been going on for a number of decades. About 10 years ago, our agency started a project to develop some uniformity in standards of data elements that were commonly used across many data sets in many of the program areas in our department and in that process we learned that many of the programs were using coding standards that had been set for them by the relevant program area in CDC. So the funding and the program units and the software provided by those program units from CDC sort of dictated what coding standards were implemented by each of the various programs in our department.

So the disparate coding systems are not easily overcome because they still have to maintain some continuity with the reporting systems that they were geared into. OMB, race categories had been in place for many years and have undergone a recent change and given a lot of publicity but the previous one had had a lot of publicity too, and yet many programs at CDC went their separate ways in coding definitions. So there is a real challenge in overcoming that kind of a barrier.

Under the principle of collecting data once and using data for many purposes, there is certainly a lot of merit in that. In the Department of Public Health in Illinois, we are currently thinking and starting to work towards simplifying the reporting of birth data from our hospitals that participate in the perinatal network systems. As we have mapped with those groups, I hear frustrations from the hospital staff in the numbers of reporting systems that they have to work with in transmitting data to the Illinois Department of Public Health.

So we are attempting to simplify that reporting and distribute to the users that require data from the birth events. This would provide data for the birth certificate itself, for genetic screening, for the birth defects registry, for immunization programs, to name a few. We know that this is going to be a very challenging project but this is one area where we are attempting to start that kind of a process and we will see the different difficulties with program turf and past practices, difficulties in trusting the confidentiality of different users as they look at the data and receive data from the one transmission from the hospital is what we envision.

So those are kind of a pilot project that we are involved with.

We also are trained to work with a larger amount of local area data for our local health departments in Illinois. About 10 years ago or early in the decade, a data and planning program was established to help the local health departments in their assessment of local needs and within that a data system was developed called IPLAN Data System, containing a lot of summary level data for counties and cities and other geographic areas in the state. That was available in the beginning, a DOS-based system on diskettes which was given to the local health departments. Later it was on a dial-in system and now is on the Internet. So progress is being made in getting a lot of local data out.

We have also I think first state to be able to collect BRFS data for all of the counties in the state. This past fiscal year we have completed the final year of a four year project in that and are providing county level behavioral risk factor data to all of the local health departments.

The purpose for collecting such data is to turn the information over to users so they can make informed decisions about health and health care, both personal and community health data, collection efforts need to remember the purpose for why the data are being collected. As we process more and more data and people want it more and more quickly, the quality standards issue that is raised in the, among some of the barriers for the NHII become extremely important. Quality standards are addressed as called quality standards for on-line information.

Just as we are concerned about the hazards of false positives and false negatives in diagnosing personal health status, we should also be concerned about the hazards of false positives and false negatives in diagnosing or evaluating community health status. Even though poor quality data for a community may not be life-threatening for individuals in the community, the community can be at risk for allocating resources in the wrong areas.

So as a trained demographer, I have some concerns about proliferation of data when using population estimates for very small geographic areas. Even though one can hardly get an article published without having confidence intervals for the measures that we are using, very little attention is given to the confidence intervals for the small area population estimates that are placed in on-line data systems.

So many users make use of the data there without really considering that there may be some wide confidence intervals around the population estimates for small areas. We don't see the population estimates but we see the rates that are generated using those population estimates.

So we need to have more testing done with the data that are coming from many different data sources; however, there are very few resources made available for targeting that kind of evaluation, even at the Census Bureau the population estimates program has very little resource available to them for evaluating the estimates that they are producing.

So that issue of quality standards for on-line information is, I think, a very key issue and will be a challenge over the next many decades.

At the Illinois Center for Health Statistics we have attempted some evaluation of those rates in small counties for Illinois and those have been mentioned by other people in earlier panels where their small counties pose very difficult challenges for providing data to them. We have had a fairly regular issue of basic research series on our vital statistics and in that over the past several years we have had a three different issues dealing with some attempt at evaluating the quality of data for small areas. One was called a public health perspective on the utility of the experimental county estimates by age, sex and race from the US Bureau of the Census. Another issue was on the pros and cons of standardized rates and another issue came out on the interpretation and practical limitations of mortality measures.

Again, each one of these was focusing on the difficulties of providing this type of information for the small counties in Illinois. I think they would be of use to many other states that have been attempting to get data out for their smaller counties.

So appreciate the opportunity to comment here and I have enjoyed listening to some of the comments earlier in the day from many of the speakers. Thank you.

[Applause.]

Agenda Item: Ronald Eckoff, M.D., M.P.H.

DR. ECKOFF: Thank you again. As I stated before, I found these two interim reports very interesting and I generally agree with the vision and plan they present. I will just comment on a few points I think need to be emphasized.

The 10 principles are excellent and several lists of knowledge gaps in different areas were also very good. At the same time, I wouldn't pretend that even if we have a poorly implemented system we will overcome many of these gaps.

Earlier I thought in some detail about privacy and confidentiality and I do think the success or failure will depend to a considerable extent on how well this is handled.

In going through a few specific items, on the section on negotiating boundaries, there is a discussion of concerted effort to remove unnecessary barriers to an integrated efficient system. It mentions greater attention to standardization and comparability, improvements in technology and creative approaches.

We have a lot of the improvements on technology, but I have heard talk at the federal and state level for many years about increasing standardization and comparability but the progress, it seems to me has been very slow. I think too many of us are too comfortable with our separate data which at least sort of fills our particular needs and we just talk about how great it would be to have more standardization so we can do more wonderful analysis. They are both practical and philosophical issues but again I think the philosophical difficulties are probably much more of a barrier.

I think a lot of times we have a kind of a passive-aggressive stance. We pay lip service to the idea of standardization but we think if we just wait awhile, that effort will fail and we can just go along in our own little worlds the way we are. In any case I think it will take some very strong, sustained leadership to overcome that barrier.

The section on resource and burden issues also raises important points. As stated, the burden on data collection and reporting undermines both data quality and providers' willingness to expand collection. Many will see any attempt to improve data collection as an added burden. In my experience, many people at all levels from lay public to professionals seem to be so rushed or so disinterested that they neglect to read or follow any instructions that you give them in the reporting of information. They just put down their first thought and if it doesn't get rejected they will start an incorrect pattern that they will follow until they are forced to change.

When presented with a change request and new definitions we frequently continue to report in the same way we have in the past. We have a new form that looks like I had before and I will just do it. The changes will require a great effort in educating reporters and even the simplest report forms are frequently done incorrectly.

I also agree that there is a shortage of adequately trained personnel to analyze and interpret the data collected, particularly at the local level. I believe an even more important component is the basic training of public health workers and policy makers in how to appropriately use the data that has been analyzed and to some extent interpreted for them.

In a similar vein, the section on maximum access and ease of use discusses presenting health statistics understandably to a wide range of local audiences. I think what is presented, how it is presented and the ongoing support for the use of the data is exceedingly important.

The section on adequate, well-managed resources stresses the need for adequate, stable and predictable funding for a strong health statistics infrastructure. Again, this will require very strong, sustained leadership. We need adequate funding of an information infrastructure to support health data in a comprehensive way. One more time I would say is strong, sustained leadership in the united front of all involved parties is essential.

Equity and the interim report. It states correctly that the full potential of the National Health Information Infrastructure will not be achieved until its benefits can be shared equally by all, and eliminating health disparities is one of the overarching public health goals of the decade. These are easy statements to make but much more difficult to achieve.

How will the technology and the on-line information services be made available in all homes and communities or to the homeless or the near homeless or in a culturally sensitive and linguistically appropriate manner in a clear and useful format regardless of the level of education.

How will individuals who may have had lots of bad experiences with government or with the private sector feel about their personal health information disappearing into what they may view as an unknown technological abyss. Technology can be an immense help in decreasing the inequity or can result in a further increase in inequity. How this is addressed will be very important.

One general issue I wanted to mention is throughout these interim reports it is emphasized this is not a monolithic system or an omnipotent data base in the sky. That sounds good, and it has advantages. At the same time I think it makes it more difficult to determine who is responsible for what so how do you assure quality, how do you assure privacy, standards, et cetera. How is the evaluation of the entire system done and how are changes made.

What is the process for determining what is feasible, what are the priorities and what are the timelines? What if one component of the system is weak or is lax about maintaining standards? How does this drag down the whole system? How much will it corrupt other components and spread information if there is a poor component? How are corrections made?

These are issues that need to be addressed. Collaboration is great, but how do we really make it work in a nation and in 50 states and innumerable local areas?

Finally, a couple of comments for a reality check and maybe a little humor.

I firmly believe more complete and better statistics and better use of constantly improving technology will be of great benefit. At the same time I don't believe for a minute that we will ever begin to answer all the questions we have.

I have three very quick examples. Baseball. Nobody has more data on every conceivable aspect of something than baseball does. But how well are they able to predict what is going to happen? They still argue about the interpretation of the data. I will admit that managers are judged and frequently fired based on their objective record. Of course, they may be fired one day and hired the next day by a different team or if you are talking about the Yankees, hired again by the same team.

Weather forecasting. They have much more data and much better technology, and I am willing to assume that they do a much better job than they did in the pas. At the same time there are few that are more criticized and considered to be inaccurate than the weather forecasters.

Finally, a little bit more distant item. I have had an opportunity to serve several times during the past several years as a volunteer in a 40-plus year study of the moose wolf education dynamics on Isle Royal. Isle Royal is the largest island in the fresh water lake in the world up in Lake Superior and is a natural laboratory. It would appear to be a very simple situation. There are currently 29 wolves and they range from 12 to 50 over the last 50 years. There are 850 moose and they have ranged from 500 to 2,500 or so and there are some beaver which is the other food for the wolves on the island. The island is surrounded by very cold water that makes ingress and egress very unusual.

The trees and the vegetation have been very well studied over the years. This study has been going on for 42 years and there have been just two principal investigators responsible for the study so you have got great continuity. And they learn more and more every year. But they also learn more and more about how much they don't understand and how poorly they can predict anything. So if we cannot understand this very simple situation, how can we ever begin to comprehend the dynamics of human health and all the variables of impact on it.

In summary, I commend the committee and the work groups on an excellent start and look forward to further developments. I think it does have the potential for great benefit. Thank you.

[Applause.]

Agenda Item: Lauren Leifer, Compdisk Inc.

MS. LEIFER: Actually, you all must be absolutely exhausted and your brains must be absolutely beyond full so I am going to suggest that we stand up and I can stand up, too, and we can discuss this because my belief is the mind absorbs only what the seat can endure. You can stay seated if you feel comfortable, I just know that people have got to have a chance to stretch and it helps a lot.

I am here from another part of the forest and I think I am surrounded by a body of really cold water. We have some wolves and we have some moose and we have some beaver. What I am here to talk about really is I am totally, completely excited and the other business owners that I talked to are completely excited about the idea of the National Health Information Infrastructure because we know there is just a whole lot of information out there and nobody knows how to access it and we suffer from that in our businesses every day equally as well and we hope that in building this we understand that as is in the large frame, so is in the small frame and so it helps us in general.

It also helps us with our employees and the reason I am here to talk about this is because in looking at this whole picture and my involvement in public health which has really come from having employees, dealing with insurance, understanding what the uninsured is and understanding the difficulty in getting information and knowledge and data and then implementing it, I see a particular continuum taking place and I believe that business, large busies yes, but small business, minority-owned business and women-owned business has an opportunity to be part of the constituency that is going to make this happen.

All the issues that you have brought up are all valid. That standardization, the security, the technology, the gathering of the information appropriately and keeping it alive and making sure that it is credible. With the technology today, there are softwares that are continuing to grow that allow for content delivery platform through portals. It is push technology. It is secure. It is available now. It can take dispersed data, it can bring it to different users to be used in different ways and I am sure that your technical staffs know about that and are addressing that right now and what we in small business believe is that we can take the information that is being gathered, that is being defined by the policy makers that then is being sent into the communities and the community public health and then we can help implement that on the practical level because as small business owners it is very important for us to keep our employees, to have employees and to be identified as part of community.

We are not separate, we are not the enemy, we are the economic backbone of this country moving forward and we are what is going to make parity take place by 2010. It is not going to happen simply by community and I am like from such a different world that you exist in that I see it so completely differently and I need to hear that we want to participate. We understand there is a need for it.

I was just at a meeting in Washington where I was listening to academicians speaking about that business owners are not concerned about mortality and moribundity. That is not true, but if you talk about it that way, we just don't get it. But if you say that you have, we are concerned about our aging parents and how it takes time away from our employees, that it stresses out our employees, that it depresses our employees, that they can't do the job that they need to do and we can't stay in business, we will listen real fast. And so it is really an issue of taking the information that you are gathering and repackaging it like one of the other speakers said earlier, from the marketing and sales perspective and helping us redistribute that information to our people who are with us the bulk of their lives as adults.

We know that, we understand it, and we believe that we can tie that in effectively, whether it is kiosks in the business that feed into an Internet system. For those who are underinsured, for those who don't have any of the equipment at their homes, the business place is where it is going to happen, whether it is the public library or the community service, it will still happen at the business level and the small business people, the minority-owned businesses and the women-owned businesses really understand it because we have been part of that oppressed group as well.

I think you have it, I don't think I need to say any more. Thank you very much for your attention and have a good trip back.

[Applause.]

DR. LUMPKIN: Just hire her as your media person and you have got the whole thing. Lauren, I would like to clarify because one of the issues that get raised fairly frequently is the concern about the compartmentalization in the brain of business between wanting to know information to keep their employees healthy but not wanting to know or get information that is specific about an employee that is not, quote, appropriate for them to get. How do you see that being dealt with?

MS. LEIFER: Well, number one I didn't speak to the issue that I see that when we go back to what the original proponents are of health, it is balanced. It is not simply disease, it is wellness. And I think that what we are talking about from the business perspective is helping our employees understand the perspective at which we are coming at it from so if we are helping with inoculizations, screenings, data gathering research, it is always done as part of the team and it is not done to isolate. It is inclusive information, not isolating information and so I think that that is part of the sell is how has it really been used. I am not interested if my employee suffers from diabetes. What I am concerned about is if that employee doesn't understand that he has diabetes and he is going to, if he doesn't pay attention to it, he is not going to, he may have a loss of eyesight or he might lose a leg and that is going to cause him to be disabled.

That is what I am concerned about because I want him to stay in the workplace. Does that answer your question sort of?

DR. LUMPKIN: Actually it kind of opens it up a little bit. Do you believe that if one of your employees has diabetes that it is appropriate for the employer to know that?

MS. LEIFER: I have to say I don't care. I don't know whether it is appropriate or not. If it impacts the employee's ability to do his job or her job, what is important is not that they have diabetes, it is just that they have something that is causing them to not function in their job well. That is what the issue is. And that is what we come from is I am not as concerned about knowing that that person has diabetes. The only reason I personally would want to know if they have diabetes because if they go into a coma or shock I would know what to be able to do immediately for it. Because we don't have nurses on staff. We have 25 employees. And everybody knows what everybody else has when you are dealing with 25 people. There is no anonymity here and everybody cares about one another because even if I do't like the person who is working next to me personally, I don't want them to not be there because then I have their workload.

It is real practical and it really hits you right in the face constantly so there is, the push, the initiative, the incentive is to keep everything moving forward and then there is the nice-nice level on top of that which is because I care about you because you are another human being.

DR. LUMPKIN: Let me see if you would agree then with what I am hearing as sort of a summary. That the issue is not knowing about what your employees have but if that illness or disability impacts their ability to work then you need to figure out how to mitigate that to prevent it from in fact hampering that person or someone else on the job.

MS. LEIFER: Yes, prevention. And I am really very proactive from the preventive standpoint so it doesn't become reactive. And I understand that you are addressing so many of the other critical issues to get to the point where we are involved but in order to make it all happen, the big, critical issue is not only understanding, creating effective data standardizing so that people can communicate effectively, have the information accessible for effective research so more policy can be defined so more programs can be in place so that we can improve our public health but it is also the critical issue of how do we as a gentleman brought up about how do we maintain it. How do we implement it. What are the costs involved and if we don't bring this to the level of business, and I specifically speak about smaller businesses, then the costs will be astronomical and I am not saying the small business is ready to pick up a big tab, I see there are all kinds of ways to make this happen that are inexpensive that help the community.

For instance, there are so many different types of chambers of commerces. There is all the different wellness organizations. There is the public community services and in most cases, the community services comes out of the hospitals and the testing and immunizations only go into the large businesses because they have to be cost effective. But some of the ideas that we are tossing around is bringing in industrial plant cooperatives, taking large buildings in downtown and having those services brought in to service all the offices, all the companies within the building so there is all kinds of really creative inexpensive ways for implementation.

DR. LUMPKIN: Other questions? I would like to thank the final panel, first of all for your patience in hanging around all day and giving such helpful comments. Are there any comments from the public? Okay, at this point, we are moving towards closure. This is a beginning for those of us in the National Health Information Infrastructure Workgroup and a way-point for the 21st Century Vision for Health Statistics so I don't think those of us from NHII have much comment but Dan, did you have any closing comments?

DR. FRIEDMAN: I just want to thank the panelists and my friend Merwyn for further comments.

DR. GREENBERG: I would just like to really thank Merwyn also for all the help he gave to the staff in putting together today's hearing. We weren't quite able to control the weather but beyond that, your help was invaluable and we do appreciate it.

DR. NELSON: I don't have much control over Chicago weather.

DR. GREENBERG: I thought we should point out we did receive some written testimony and I don't know if any of you folks who submitted it are here but we did appreciate that and we will continue to have that for the rest of our hearing so if any of you think of, have a belated thought, please send it in because we are continuously trying to take in input as we are thinking about these visions.

DR. LUMPKIN: Okay, we are adjourned.

(Whereupon, the meeting adjourned at 4:26 p.m.)