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Transcript of January 11, 2001 NCVHS Joint Hearings of the Workgroup on National Health Information Infrastructure and Workgroup on Health Statistics for the 21st Century

[This Transcript is Unedited]


National Committee on Vital and Health Statistics

Joint Hearings of the Workgroups on
National Health Information Infrastructure and
Health Statistics for the 21st Century

January 11, 2001

Loews Hotel at L'Enfant Plaza
Washington, D.C.

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


NCVHS Committee Members:

  • John R. Lumpkin, M.D., Chair
  • James Scanlon, HHS Executive Staff Director
  • Marjorie S. Greenberg, Executive Secretary
  • Jeffrey S. Blair
  • Simon P. Cohn, M.D.
  • Kathryn L. Coltin
  • Daniel Friedman, Ph.D.
  • Kathleen Fyffe
  • Richard K. Harding, M.D.
  • Eugene J. Lengerich, V.M.D.
  • Vickie M. Mays, Ph.D.
  • Clement Joseph McDonald, M.D.
  • Paul Newacheck, Dr.P.H.
  • Mark A. Rothstein, J.D.
  • Paul M. Schwartz, J.D.
  • Edward H. Shortliffe, M.D.
  • Barbara Starfield, M.D.
  • Kepa Zubeldia, M.D.

Liaison Representatives:

  • Gary G. Christoph, Ph.D.
  • J. Michael Fitzmaurice, Ph.D.


  • Delton Atkinson, Ph.D.
  • Michael E. Bird
  • David Brin, Ph.D.
  • Paula Bruening
  • Thomas A. Burke, Ph.D.
  • Bette-Jane Crigger, Ph.D.
  • Amitai Etzioni
  • Anjum Hajat
  • Brett Kay
  • Alana Knudson-Buresh, Ph.D.
  • Nancy M. Lorenzi, Ph.D.
  • Richard R. Nugent, M.D.
  • Lee Rainie
  • Kathryn Wilber


P R O C E E D I N G S [9:05 a.m.]

Agenda Item: Welcome and Introductions

DR. LUMPKIN: My name is John Lumpkin and I am chairman of the NCVHS and also chairman of the National Health Information Infrastructure Workgroup of that committee, which is one of the partners in the hearing.

Dan, if you would like to introduce yourself, the other co-chair or something.

DR. FRIEDMAN: I am Dan Friedman with NCVHS and the Massachusetts Department of Public Health.

DR. LUMPKIN: We are going to start out with introductions. We are going over the Internet live. So, for those of you who are sitting at the table, I think -- maybe when you start speaking if you kind of take a peak over at the folks at the counter, making sure that you are going out so people can hear you, those who can't make it, who are listening in.

We are going to start off with introductions and then we will proceed on with the first panel. Let's start off with Marjorie.

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

DR. SHORTLIFFE: I am Ted Shortliffe. I am chair of medical informatics at Columbia University.

DR. DEERING: I am Mary Jo Deering, Department of Health and Human Services and lead staff to the NHII Workgroup.

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

MS. BRUENING: Paul Bruening, the Center for Democracy & Technology.

MR. RAINIE: Lee Rainie, The Pew Internet & American Life Project.

MR. WEINZIMER: I am Ron Weinzimer(?), chief of the Data Dissemination Branch at the National Center for Health Statistics and part of the workgroup.

DR. ZUBELDIA: Kepa Zubeldia. I work for Claredi Corporation, a member of the National Committee.

DR. HARDING: Richard Harding, South Carolina. I am a member of the committee.

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

MS. JONES: Kathy Jones, staff at NCHS.

MS. SHU: Lindsey Shu, Office of Disease Prevention and Health Promotion.

MS. HAWK: Susan Hawk, Division of Data Policy.

DR. CRIGGER: Bette Crigger from The Hastings Center and project editor for the eHealth Code of Ethics.

MR. FANNING: I am John Fanning from the Department of Health and Human Services and I am the privacy advocate of the department.

DR. NUGENT: Dick Nugent, medical director for Title V for the State of Arkansas Health Department and here representing the Association of Maternal and Child Health Programs.

DR. LORENZI: Nancy Lorenzi from Vanderbilt University, Department of Medical Informatics.

MR. BARUCAPA: Sol Barucapa(?), Blue Cross, Washington, D.C.

MR. BIRD: Good morning. Michael Bird, president, the American Public Health Association and I am from New Mexico.

MS. JONES: I am Gwyn Jones with the National Rehabilitation Hospital, Center for Health and Disability Research.

MR. MOORE: I am Bob Moore and I work for another company. I work for a company called Heiden(?) Systems. I used to work for HCFA for about 30 years. Thank you.

DR. LUMPKIN: Bob, it is great to see you. It has been a long time.

The first item on the agenda, we are going to have opening comments from Dan about the vision for the 21st Century health statistics.

Agenda Item: Introduction to "Shaping a Vision for 21st Century Health Statistics"

DR. FRIEDMAN: Thanks, John.

I am going to speak very briefly. The NCVHS and the National Center for Health Statistics and HHS Data Council has been engaging in a process to develop a vision, a plan for health statistics for the last couple of years. The first year or so, our activities focused on a set of local discussion groups that we had throughout the country, as well as expert discussion groups that we had in Washington, as well as the National Academy of Science Workshop. Based upon that input, we developed an interim report that, hopefully, you have both seen.

For the past six months or so, we have been receiving feedback on that interim report via a series of regional public hearings. This is the final of those hearings. We have been looking forward to this hearing as a particular opportunity to obtain feedback and advice on specific suggestions, both from stakeholders and particularly from a variety of professional associations, certainly including APHA, as well as to obtain feedback around confidentiality and privacy issues and health statistics and feedback both on current issues that we all know about, such as the role of informed consent in health statistics, more technical issues, such as how do we deal with privacy and small numbers, how do we deal with privacy of cell size suppression, on how do we deal with privacy of data subjects on releasing public health data to researchers, as well as on a set of emergent privacy issues.

The interim report stresses the importance of increased use of shared standards leading to more linkage of data sets. That clearly raises a host of confidentiality and privacy issues that we would like feedback on. The interim report stresses as one of its principles the ultimate development of unitary data collection and use of those data for multiple purposes.

We are looking forward to receiving feedback on that principle and its implications for confidentiality and privacy. The interim report also stresses the need for greater electronic access and easier access to aggregated data. We are also looking forward to receiving feedback around that principle and its implications for confidentiality.

Finally, there are, I am sure, a whole host of confidentiality and privacy issues relating to health statistics that we haven't yet envisioned or that we are going to be confronting in the next 5, 10, 15 years. To the extent that those of you who are giving testimony today can help us try to envision what we haven't yet envisioned in terms of that, it would be very helpful as well.

Thank you.

Agenda Item: Introduction to "Toward a National Health Information Infrastructure"

DR. LUMPKIN: Thank you.

Just before we get started with the first panel, I just wanted to do a few introductory comments on the National Health Information infrastructure. We are kind of leaning towards another title, like "Better Information for Better Health" or something along those lines, which may be more customer friendly.

But I think it is more important to start out with describing what this thing is not. It is not a national database nor is it a technology. That is very important to state right up front because what we are trying to do is point a direction for health information development into the -- I guess the rest of this decade and then to the rest of this century. What it is not, it is not a national database. We are talking about how information or actually data that is currently stored in many places can be best placed under the control of the individual, who it refers to and as well as be used by those who were providing care, so that it actually becomes information to improve the health of those individuals, that we would envision this data would be kept pretty much where it is kept today, which is under the control of the individual to the extent that it is, and electronic means may facilitate that, and by the providers who are providing care and, again, emphasizing the fact that how it moves pretty much would be similar today or perhaps enhancements that we can build in because we haven't been able to envision how people have been able to control their own data or would be able to, given a paper-based environment.

The second point I would have to make is that one of the things that we see as part of our vision is that this is a very crucial time for health care and you can't put what we are doing without placing that in that context, that fundamentally health care has not changed in the last century. It started out as a process where people would walk into a room, a physician, other caregiver, and basically that encounter was defined by the knowledge that was brought into that particular room.

Many other industries have flourished by finding ways to bring knowledge into those kinds of encounters and to improve the outcome, to monitor those events, to make people remember when they forget vital, important things. Anybody who has been in an airplane knows that when -- at least if you fly the small ones that I do back and forth to our state capital, and the cockpit is open because it is like only a 19 seater, and, you know, when you are starting in the low, it says "minimum, minimum, minimum," not because the pilot doesn't know that it is minimum but they may be doing something else. The system is designed in ways that will help them remember and do their job better.

As such, automation has not met that promise and what we are looking towards are ways to create that sort of vision. So, what we are trying to do is to create a vision for the future. The first step was to create that vision. That was a document that all of you have been asked to comment upon, who will be presenting today.

The next step, though, and this is really the more difficult one, is to discuss the barriers and to look towards the steps that we need to take, both the short term and the long term steps, the kinds of things that we need to recommend to the incoming Secretary as the best place to put investments.

But also we need to make sure that as we are moving forward that we cover all the bases, that we address those issues so that our vision includes a patient-centered, a person-centered information environment that gives that individual the ability to have some and exercise some control over their health care. Clearly, individuals, people want to do that and the biggest problem has been there has been a knowledge gap. Why not use information technology as a bridge to that knowledge gap, to allow them to become really fully partners in providing their health care.

Obviously, there are other issues of privacy, confidentiality, technology and so forth that come into play within this vision, but our goal will be to try to set that big picture so at least we know what direction we ought to be going to in the system, which way it ought to be developing.

So, that is kind of a big thing for us to bite off. We have taken the first bite and we intend to move on after having conducted now I think this is our fourth hearing. We will be attempting to take comments from today, as well as solicit written comments on sort of the directions, try to synthesize those into a series of recommendations that will be placed before the full committee sometime this calendar year.

So, if there any comments from the members of the committee on those two approach? Then let's move on to the first panel. Dr. Brin was unable to make it here at the last moment. He sent a note saying that he was not well, but we do have written comments, which will, of course, be on our site.

So, we will proceed with Lee as the first presenter. Welcome.

Agenda Item: Perspectives on Privacy and Confidentiality

MR. RAINIE: Thank you very much. Good morning. It is an honor to be here commenting on this critically important initiative of the Department of Health and Human Services. My name is Lee Rainie and I am the director of the Pew Internet & American Life Project, a research organization fully funded by the Pew Charitable Trust to do nonpartisan analysis of the social impact of the Internet.

One of the major goals of the project is to assess the way Americans are using the Internet to get health information. Towards that end, the project has done several phone surveys of Internet users, one of them specifically focused on those who seek health information on the web, and released its findings n November in a report entitled "The On-Line Health Care Revolution: How the Web Helps Americans Take Better Care of Themselves."

It was the release of that report, I guess, that caught Mary Jo Deering's attention and it was at her invitation that we are today. I would like to submit it to the record, just so that you are aware of it in case you haven't read it already.

Our survey work on health care pertains to individuals not health care providers. So, I will focus my remarks on the personal health dimension of the National Health Information Infrastructure. I guess my opening thought would be to encourage you to think even in more expansive ways than you already have in your working paper, to think of the Internet as a partner, as one of the information and communication tools that is particularly important to patients as they are making health care decisions for themselves.

Fifty-two million American adults, 55 percent of those with Internet access, have used the web to get health or medical information. We call them health seekers and the majority of them go on line at least once a month for health information. More adult Americans have used the Internet to get health and medical information than have bought products on line, than have sent or received instant messages, than have participated in on-line auctions, than have performed on-line banking or than have made travel reservations on the Internet.

Half of health seekers say access to information on the web has improved the way they take care of themselves and many report that the material they gather directly affects their decisions about getting care and treatment for their illnesses. Of all the possible impacts of the Internet on people's social lives, this is the most profound.

In an era when many are not satisfied with the availability of their doctors and not satisfied with the duration of their meetings with their doctors, they are turning to the web to provide the information they find hard to get from their caregivers. They are also increasingly interested in participating in what the medical community calls shared decision-making.

The NHII will be able to build on that foundation. Consumers and patients are already seeing real benefits of searchable medical databases and will welcome any progress that the NHII can make toward providing convenient, reliable, secure access to high quality information.

But Americans are quite anxious about the quality of medical information on line and about the privacy of information related to their health. I would highlight two major barriers to your vision of NHII that flow out of our findings. The first is a lack of support that is pretty widespread in the provider community for empowering patients. The second is the patient's fear of the consequences of that information falling into the wrong hands.

Let me first talk about the accuracy of the information on line and how you might help in that regard. Health seekers go on line in a very action oriented frame of mind. They are anxious to get information that will help them make important, even at times, life and death decisions. In most cases, they feel they are getting more information about illness, prognosis and treatment options from Internet sources than they are getting from medical professionals.

Even as they take this information to heart, though, 86 percent of health seekers say they worry about getting health information from an unreliable source on line. Compared to other Internet users, those who are using the Internet to get financial information or information apart from health care, health seekers show a greater vigilance in checking the source of the information they are getting on line. They are also much more likely than other information consumers on the Internet to have consulted multiple web sites in their hunt for health information.

This suggests that your hope to create reliable guides and mechanisms to verify the accuracy and validity of health information would be greeted very warmly by health seekers. Too often, they are stumbling around in cyberspace unaided. According to our study, 81 percent of health seekers found the information they wanted through an Internet search. Either they went to a broad gauged search engine and typed in key words and went to the sites that were generated out of that search or they went to known health sites, but still used the search function in those health sites by, again, typing in key words and going where the top of the list sent them.

Sixty-four percent of those health seekers say they have never heard about the web sites they ended up consulting before they began their search. They are ending up in random places that they did not know about before they typed in those key words. Since a majority of health seekers went on line for information right before or right after a doctor's visit, there is an opportunity for health care providers or other trusted intermediaries to supply lists of accurate and patient-friendly sites for guidance on sophisticated search strategies.

Under many circumstances now, patients get the exact opposite message from their providers. The message is you are not helping yourself by getting more information and you are pestering me with all those web printouts you are bringing into my office and demanding answers to.

On the privacy front, most users go to health sites for research and reference purposes and have been able to get the information they need without making any significant tradeoffs by giving up personal information themselves.

Only 21 percent have volunteered their e-mail address to a health web site. Anonymity or at least the feeling of anonymity is enormously important to health seekers. Eighty percent say that one of the major appeals of getting health information on the Internet relates to that anonymity. A user can hunt for information on a sensitive subject and no one has to know about that bout with depression or that incontinence problem.

That partly explains why Internet users so strongly fear the prospect of such information falling into the wrong hands. A certain amount of shame might be the cause, but there are practical worries, too. Eighty-five percent of health seekers are concerned that their insurance company might change their insurance status or raise rates if the firm finds out what web sites the health seeker has visited.

More than half of health seekers fear their employers might find out what sites they have visited and take action as a result of that. For many, this anxiety is compounded by the fact that they do not want outsiders misinterpreting their click stream.

We asked respondents in our survey to describe the most recent time they hunted for health information on line and 54 percent, more than half, were looking on behalf of someone else, a spouse, a child, an aging parent or friend. Thus, they have the extra worry that a profile of their surfing might be misread as an indication that they have an illness, rather than the loved one for whom they are actually searching.

Finally, we found that concern about privacy extends to the idea of on-line medical records. Sixty-three percent of health seekers and 60 percent of all Internet users, even those who haven't even bothered to search for health information, say that putting medical records on line is a bad thing, even if the records are on a secure, password-protected site -- that was included in the question -- because they worry about other people seeing their personal information.

Among the most sensitive to privacy violations are African Americans, parents and Internet newcomers, those who have been on line for the first time within the past six months. Our sense is that this apprehension about medical privacy can be reduced. First, some of it will vanish as more and more people get more on-line experience. Those who have been on line for several years exhibit noticeably less concern about privacy violations probably because they have not had serious problems.

Second, even with these express concerns about privacy, many Internet users have already shown that when the information transaction suits them, they are willing to give up personal information in return for access to content and other on-line information that matters to them.

My strong hunch is that if a doctor told her patients that creating an on-line medical record would result in better care, many would swallow their privacy concerns and allow the record to be created.

Third, many of these worries would dissipate if users were given assurances through anti-discrimination laws that information from their on-line medical searches could not be used against them on the job, in their insurance status or in other key aspects of their lives, like access to credit or housing and things like that.

Concerns would drop considerably if real penalties were put in place for privacy breaches. So, consumers welcome news that HIPAA violators would be subject to civil and criminal penalties, but they would also like the right to sue violators themselves. Eighty-one percent of health seekers think that people should be able to sue health or medical company if it gave away or sold information about its web site users after saying it would not.

It seems that HIPAA will not cover a majority of the nation's more than 17,000 health-related web sites. We are still in the process of analyzing that document with the Health Privacy Project based at Georgetown University, but our preliminary analysis suggests that many web sites do not clearly fall into the three categories of organizations that are covered by the regulations; health care providers, insurance companies and health data clearinghouses.

Many of the most common features of health web sites will not be covered, such as health assessments, applications for clinical trials, chat rooms and bulletin boards and personal management tools, such as on-line disease management and patient-generated medical records.

As for your request that we look with you at the next step that you ponder, I guess ours would fall in under a very broad category encouraging you to think expansively about a vision for the Internet as a partner in the health care information universe. The first step we would encourage is a buy-in from the medical establishment. Patients are going to hunt for this medical information whether their doctors sanction the searches or not.

Internet users would really appreciate trusted allies to help guide them on those searches and no one should be better qualified to do that than providers if they have the right frame of mind.

Second, we would encourage transparency and privacy awareness. One of the reasons privacy fears run high is that Internet users don't know what is happening. In another context, we asked the broad universe of Internet users if they knew what a cookie was, this basic tracking tool, and 56 percent did not know. Even a third of Internet veterans, people who had been on line for more than three years did not know the basic mechanics of tracking, how to set their browsers to check for that, how a profile of them could be built.

They would appreciate education and technology tools to give them a better sense that they are in charge of their personal information and that they know what is being done with that information.

Finally, I guess, I would encourage that your voice be added to all the voices that are encouraging a different sort of privacy mindset on the Internet universe. We have found that users would very much like the privacy playing field tilted in the opposite direction. Right now the burden of action in most cases is on the users. They are tracked and provided by web firms unless they take steps to opt out. They would rather have the presumption of privacy when they go on line and that the burden of action be shifted to on-line firms.

Thank you.

DR. LUMPKIN: Paula, and then we will take some questions and discussion.

MS. BRUENING: Thank you.

My name is Paula Bruening. I am the staff counsel with the Center for Democracy and Technology. CDT is a public interest group dedicated to promoting consumer empowerment and free speech on the Internet.

I am pleased to have the opportunity to be here today to learn about your vision for the Health Information Infrastructure and to talk about this critical issue of privacy. In reviewing the documents in preparation for this meeting, I was impressed not only by their grand vision and the exciting benefits that they talk about that will be offered to patients in the future, but I think they also the illustrate the way in which we have already begun to move toward large scale sharing of information within the health system and they also illustrate the fact that the lines between information are really becoming blurred.

What was once perceived as treatment information is now, of course, being used for reimbursement, reminder notices coming to us on the basis of information that our health care provider and sometimes those reminder notices can bleed over into the area of marketing information as well. While at CDT, we definitely encourage good strong compliance with fair information practices, I think that it is becoming clear that in the health care area, those fair information practices can be severely challenged because to participate in health care in this country, you become less and less empowered to say "no" to certain kinds of uses of information.

I think that your project illustrates that down the road we are going to have even greater sharing of information, all of it for some very good benefits, but it does raise greater issues of privacy. Obviously, we have had efforts in the last few years moving toward the HIPAA regulations and beginning to deal with some of these issues. We at CDT feel that HIPAA has dealt with some issues better than others and I think that your challenge is going to be to look very closely at some of the places where HIPAA has not been clear and has not, perhaps, put into place some of the things that we really need to empower patients and to protect privacy.

Because of the blurring of lines between the different kinds of information and a tremendous need to share information to make the health care system work, I think that the fair information practice of consumer choice is severely challenged. The HIPAA regulations illustrate this. In many cases there is notice that is required but care can be denied if a patient does not consent to the certain use of information. That is not new. That has gone on in our health care system for a long time.

We all know why that is necessary. I think what your project also talks about, though, is it makes very clear and illustrates profoundly is the astonishingly large number of health care workers, who may be granted access to a person's medical data in the course of providing health care and administering the health care system. As it stands now, what I could not find in your documents and what I cannot find in the HIPAA regulations is the accountability that should be built into the system.

As it stands now, a health care worker can look at patient information and access that in a very appropriate manner, that person may have the authentication information that they need to say that they are appropriately looking at those documents but they can also misuse that information.

What I can't find is a place where there is an audit trail, where there is an accountability system so that we know who has gotten into those records so that we can go back and find out when there has an abuse, what the source of that abuse is. Tracking the source of information is critical to making privacy work when there has been an abuse.

The concept of privacy was once thought of as the right to be left alone, but in the information age, it has evolved into more of a concept of the ability to control the manner in which information about an individual is used. As we have already heard today, the sensitivity of health information is paramount. I think if you talk to individuals, it is their health information that they are concerned about more than any other.

In a situation such as the health care information in which choice is challenged by a system, where the sharing of information is fundamental, that sense of control that consumers and patients want is also challenged, so that accountability really does become key. At CDT, we are very interested in the technological solutions in addition to the best practices and the laws that can be put in place in order to solve these problems.

So, we are very interested in you taking a look at good use of technologies that will provide audit trails, that will allow health care entities to go back and check those audit trails on a regular basis, that provide for very strong authentication for users of the system so that when they go in, only the proper people are going in.

Also, that the personnel offices of these health care entities really do train workers about what is the appropriate use of information that even though you have the ability to go in and look at a file, going into check on what a neighbor's prognosis is not an appropriate use of that, talk about the perils of information brokering and what that can do to a patient and have good systems in place that do have sanctions for employees.

I think that it is also important in terms of accountability that patients have meaningful access to their information. I think that technology can help with that. I know that this does put a burden on the health care system, that it is probably not always wise to have a patient look at their medical record without some kind of interpretation from a member of the health care community, but I think that to provide that sense of control, I think that patient access in a meaningful helpful way is going to really put the sense of control back into the hands of patients and it is going to raise the accountability factor of the health care system.

I think another important piece of providing for good privacy as you move down the road is using what we call privacy impact statements. It always seems that when collection of information is made possible and facilitated, made easier, we very often come up with new uses for data. Chances are you will. Many of them for very good reasons. There will probably be also challenges. People will present uses for this information that they would like to have that may not be so favorable.

However, I think what is really important is that as the system expands, as you find new uses, I think it is going to be very important that on an ongoing basis you analyze the impact of these new uses, of these new kinds of sharing and linking and produce privacy impact statements, really put pen to paper to make sure that you are analyzing very closely what is happening as the system is growing. Find out what the concerns are on the part of the public.

Look for the unintended consequences of what you are doing and build that into your protocol and systems. In talking about next steps, again, we really strongly encourage the use of technologies as they are being developed and we encourage their development to facilitate meaningful patient access and accountability.

We believe that internal audits are going to be very important to watch what is going on with data practices within a company on audit trails to monitor who is accessing information and for what reasons are also going to be very important. We also do believe that as a part of your protocol, requirements for ongoing and intensive privacy review and privacy impact statements that will keep a close eye on privacy as your system is developing.

Thank you.

DR. LUMPKIN: Thank you.

We will go into questions. I just have a couple to start off with.

Paula, have you seen the full committee's recommendations on security, the ones that were made to the Secretary prior to the development of the NPRM on security?

MS. BRUENING: I believe so.

DR. LUMPKIN: I was wondering if your concern was that we did not include fully those recommendations in the NHII report or whether or not those recommendations fell short because that will help us in deciding. Obviously, we didn't include those and from your comments, that is something that we would look to correct, but it would also be helpful if those recommendations aren't adequate to meet your issues of accountability, then we would certainly want to revisit that.

MS. BRUENING: I think they should be included in the review and I think they should be amplified so that they are very -- core statements about, you know, the use of technologies and about building in those protocols within the health care -- individual health care entities.

DR. LUMPKIN: Another clarification you talked about, privacy impact statements, I was not clear if you -- where you would -- who would do those impact statements. Is this the Federal Government, state government, the health care organizations? On what level would you see those being done?

MS. BRUENING: Perhaps -- I think those privacy impact statements could probably be developed through an institutional review board. I think that it is possibly something that could be done in conjunction with the Federal Government, but it should be -- what you are talking -- it is a little bit hard to visualize exactly how this would work, given this is somehow a decentralized and at the same time centralized system, but I think possibly the creation of some kind of a board that could look at these things on an ongoing basis would be really helpful, where there -- how do I put this -- representatives of different members of the health care community, whether it is health care reimbursement, treatment, hospital systems, clinics, all of the different entities that are sharing this information can look at the potential use of the information and then what the impact is for privacy, depending on the patients as they are coming in, what kinds of internal uses are going to be required of that information.

DR. LUMPKIN: So, just so I understand your answer, the answer to your question is "yes," all of the above.


DR. LUMPKIN: And it would be similar to any time a change in function, one of the things that we have just instituted in Illinois we are trying to bring on line is creating within the state health department a privacy review committee so that when we have a new form or something to request information from the public, it has gone through some sort of review process.


DR. LUMPKIN: Is that the kind of thing you are talking about?



Questions from the committee?


DR. FRIEDMAN: Mr. Rainie, you spoke about with what seemed to be skepticism about clinicians' attitudes towards patient information gathering via the Internet. You also talked at the end about the need to obtain buy-in from the medical establishment. I was wondering if -- I have detected some of that skepticism myself as a patient. I was wondering if you and your colleagues had any ideas about how that buy in from the -- from people who are providing clinical care could occur?

MR. RAINIE: I actually think it might be structured as a covenant. If providers had some sense that they were along on the journey seeking the information, they would probably have a much greater sense of confidence that the material that came back at them from patients who understood more would be relevant, useful and potentially even an expansion of that they were thinking about in terms of care.

In one sense it is inevitable. They are not going to be able, unless they want to close their practices, to tell patients don't look for more information. So, in some sense it is a message of deal with it, but in another sense, this could be an enormously powerful tool for helping care outcomes and that would be in their interest.

There are enough doctors who have had tremendous experiences with their web sites, with helping people and pointing them in the right direction with transferring some of the exchanges that would otherwise have taken their time and taken away from their practice, to move them on line.

So, I think sort of highlighting those stories would also be a useful thing as well.

DR. LUMPKIN: Let me just kind of branch off of that and ask Richard a question through your involvement in the psychiatric association. Do you know to what extent the core content or the residency training includes or would include a core content element on assisting patients and seeking health information???

DR. HARDING: Well, that is an interesting question because we are in the midst right now of core competencies in residency training, reestablishing those kinds of guidelines. So, that would be one of the areas. This is a very important issue for physicians, as well as other providers because patients, of course, have access to 17,000 web sites, as you say, all the way from The New England Journal to less than that.

The piles that come in are impressive and often patients deal with those with the same level of trust from The New England Journal to the lesser ones and come in with that pile, asking the physician to review all the data and kind of come up with the same decision that they have already made.

So, it can be a real frustrating situation. On the other hand, it almost in my mind guarantees the possibility of better compliance when the patient is better educated. So, having that information available, but in effect having some kind of stamp of approval on some of those web sites would certainly be a beneficial thing to physicians, but gets into all kinds of probably constitutional issues about what can be put on the webs and what has standards and so forth.

It is an excellent point, that just as we have tried to increase medical training for public health issues and populations, this is the same kind of thing that we are going to have to have in the training programs for all physicians and other providers as time goes on and where we need to spend more time concentrating on that.

DR. SHORTLIFFE: John, can I ask another question that relates to exactly the same issue?

I wonder if you have enough data to be able to say anything about just how pervasive this problem is in the physician community and whether there are any trends. I ask this because, you know, one of my jobs is to talk to physician groups about the Internet and consumer access to health information and the like. I am sure I see a skewed sample. You know, the folks that come to those talks are the physicians that are interested. So, I certainly see a large number of physicians, who, in fact, encourage this kind of use of the Internet, although they do have precisely the kind of concerns that you were just mentioning, which is precisely because of the lack of quality control, sometimes a tremendous amount of time can be wasted, trying to in a thoughtful way persuade a patient that they found on the Internet really doesn't apply to them or isn't good medicine or what have you and that they may have been led astray.

So, there are time issues there, but it does seem to me that there may be a significant minority, at least, if not even a majority of physicians, who are beginning to see this as inevitable, as you say, and who are struggling with the issue of how best to try to make sure that patients not only use the Internet to get information, but do it wisely and in a way that fits within the time constraints of a busy modern practice in the interaction between the physician and the patient.

MR. RAINIE: There are not any longitudinal studies on this and there are some widely varying and widely -- the spectrum of reliability in some of the surveys is pretty broad, but the basic trend is that more and more doctors are embracing this and thinking that it is a major aspect of their role to help patients do on-line searches. There are -- I would say it is still a minority, but the trend line is improving on that and it is actually one of the areas we are going to start looking at.


DR. DEERING: I was wondering whether in your survey you were able to discern useful information for us about use of the Internet that did not -- was either not predicated on or not followed by a clinical encounter. In other words, what is the role of this kind of information seeking that does not eventually, at least in the relatively immediate time frame, produce or touch on health care utilization.

MR. RAINIE: It was hard to get people to talk about that. One of the frustrations of doing survey work the way we do it is you can -- if there is a broad understanding of the terms -- being self-diagnosing and they don't seem to be self-medicating, but they are showing up in the doctor's door then with these printouts and saying, look, either you gave me this diagnosis and I think it is deficient or, you know, I found out this extra stuff; tell me what it means.

That, again, speaks to this issue of my sense that there is a great hope and yearning on the patients' part to have their doctors along on this ride and getting some help from them.

DR. ZUBELDIA: I have a question for both of you.

In the last year, we have seen a lot more privacy policies being posted on the web sites. Has that had any impact on what you are talking about? And do people read and care about those policies? Is there the trust on the policy there or is it all smoke?

MS. BRUENING: I think what you are talking about is the voluntary posting of a privacy policy by a web site that has really sort of come from the efforts in the United States to come up with a self-regulatory approach to addressing privacy concerns on the net.

I think that there is -- the jury is still a little bit out on that. I think there has been a lot of posting of privacy policies. It is not clear how often users actually read those policies, but they do. Especially if a company is involved with a seal program, a privacy seal program, there do have to be certain elements that are put forth in that policy that tell a consumer what is going to happen to their information once they turn it over.

Consumers will say that they feel more comfortable if there is a policy and if there is a seal program, but there is also a question of how effective are those notices. Do they become so long and so convoluted and difficult to understand that they don't communicate very well to the user?

So, I think that that it is a good thing, the posting of those policies. I am not sure it is completely the entire answer. I think there needs to be some work done on how effectively those notices actually communicate to users and whether they are useful to the user.

MR. RAINIE: About a fifth of Internet users at one point or another have read a privacy policy on a web site. It is slightly higher among health seekers, just that segment of the Internet population, who are getting health information, but they tend -- they do say that they are comforted by it. Their bigger concern is breaches of security. They are not as much worried about companies slicing and dicing and profiling and then selling it, although that is a concern, but "hackers" is a red flag to them. One of the great concerns that they have about medical records is not so much it will be abused by people who already have access. it is this notion that it is the frontier and no technology is bullet proof and there are such disastrous potential consequences when this information is breached, that that is what gives them the biggest concerns.

MS. BRUENING: I would just like to add that I do think that when there is a seal program behind those privacy policies, it does give the users some kind of resource if they feel something has happened to their data that shouldn't have, if there has been a data spill, there is somebody kind of looking over the situation that will put their feet to the fire of that Internet site.

So, I think there is this sort of added level of enforcement that a seal program will add to that.

DR. ZUBELDIA: Let me ask a second question. There is evidently from your research a lot of concern about security. The report outlines the concept of a personal health information appliance of some sort. That could be a device held at the patient's own home, if they so choose. Would that be a potential solution for that concern?

MR. RAINIE: I wouldn't be able to answer that, but I would guess so and it -- in all these matters of privacy, putting them in historic context is somewhat helpful. This is a basic value in America, that in the information age, there is an extra dimension added to it. It used to be what Justice Brandeis said, the right to be left alone. The information age component is I want the right to control my identity.

Any mechanism that gives Internet users a sense that they are in charge or at least they are being notified or at least they have sense of how this is happening will be beneficial. I think their fear about security breaches in some sense relates to the flow of media coverage of it. People are most concerned about the things that they have heard about.

We were in the field with a privacy survey before the carnivore story at FBI came out and we got very low readings on people's concern about their e-mail being breached just because there had been no news coverage of it. My guess is that rating would be higher now because there is a sort of episode that people can focus on.

So, again, it is in many respects a fear that relates to what they -- the larger environment of what they are learning from news organizations.

MR. WEINZIMER: In your surveys you got at the fears and the risks that people have about sharing information. How about the other way around? Do you think that people understand benefits of exchanging information among health providers and is there something that we can do to better showcase the value of sharing information to kind of mitigate those fears? Because what we have heard from others in our discussions is the fears and the risks are understood, but we don't do a good enough job, perhaps, of showcasing the benefits of exchanging information.

MS. BRUENING: I think that consumers if they -- whether they are health consumers or another kind of consumer, if they understand the benefit that they may derive from the sharing of information, they are more apt to be willing to do that.

So, I think that the more you can communicate that to health care consumers, the more willing they might be to share their information. But I think that at the same time there has to be some kind of tools put in the hands of consumers to protect their privacy. Especially when you are talking about the Internet, I think that there are a great deal of what we call privacy-enhancing tools, technologies that allow consumers to take some kind of control over how that information is being used or shared or whatever.

We worked on the Platform for Privacy Preferences, which actually sort of obviates the need for the consumer to actually read all of those notices that you spoke about so that technologically can go along and sort of read those notices for the consumer and sort of keep the consumer away from sites that they don't really want to go because they don't have the kind of privacy protections in place that the consumer is looking for.

So, I think it is sort of -- it is both. I think it is communicating benefits, but also giving the health care consumers some sense of power and control over what is going on.

MR. RAINIE: Americans are already, even from their pre-Internet experiences, relatively comfortable with information transactions. I give you a piece of my personal identity and you give me something of value in return; preferred shopper cards, easy passes. You know, you can go down the list and the great majority of Internet users say that they are open to these exchanges.

I think what you have heard before is something that we see a lot. People don't know what the benefits are. So, some sense of helping them understand the context of their information sharing would be enormously beneficial.

MS. BRUENING: I think what is also really important is really being very clear with users, consumers. I am a little challenged to what we are -- how we are referring to people using the system today, but I think what is really important is making sure that they really understand what is going on because -- before I came to CDT, I worked for a privacy seal program and what I learned from that experience is that nothing upsets people more than having their information used in a way that they don't know about or that they don't understand.

As long as you have a one-on-one relationship with a provider, with an Internet site, with a company that is providing you with medication or medical equipment, there is an understanding about what that information exchange means and what the ramifications are, people can be fairly comfortable.

The minute they feel as though somehow that information is being shared in a way that they didn't consent to, they don't feel comfortable with, they don't think is useful and they find out that that hasn't been made clear to them, they become extremely upset. So, I think the more sunshine you can shed on this, the better off you are going to be.

DR. LUMPKIN: Well, that gets me to my next question. We have also made a series of recommendations and have used the pronoun "you," which in English as opposed to Spanish is both singular and plural and all encompassing.

Who should do this? Is this something that you envision as being something by you, the Federal Government or this something that ought to be a public/private partnership as an entity that is spun off from the Federal Government or is this something that the Federal Government should encourage the private sector to develop some organization or arrangement to do?

How do you see -- if you were in our position of advising the Secretary on health information policy, what would be that recommendation in how to accomplish these goals?

MR. RAINIE: I would think about unpacking it. Since it is such a decentralized system, there are different elements of the system that can tackle different elements of the problem. If the Secretary of Health and Human Services thinks that the National Health Information Infrastructure is a good idea, there is a burden then on the Federal Government to set a tone of saying this is what we think we are getting out of it. These are the protections we build into it. This is why it is good for you.

At least in the broad sense, setting the environment that explains what is going on, sets up whatever regime of penalties and uses and protections that needs to be broadly in place. But, you know, you are probably not going to be able to browbeat hold-out doctors into thinking that this is a good thing for them and you are probably not going to browbeat some patients into thinking that some element of disclosure is going to help in the community health or public health setting.

Those burdens seem much more individual. It is maybe a doctor's burden to say, look, in addition to your getting specific benefits out of this, if we can strip away any identifying information, but also pass this along to the public health authorities or community health authorities, these are the other things that will flow from that, I think people will do it.

I am not sure that is a burden of government or at least the Federal Government. It much more seems to be a local burden.

MS. BRUENING: The word that keeps coming to mind as we are having this discussion is "best practices." I think CDT definitely does not shy away from legislation, from government action on these issues when it is necessary. But I think when it comes to technologies, you have to be very careful about sort of legislating for a technology that is evolving. What we found is that you can create that legislation and then the technology, the system, the business models all change to such an extent that by the time you have got them all in place, you are dealing with a very different kind of animal.

So, I think the idea of unpacking and going -- and sort of taking a sort of entity-by-entity approach is important, but I think what is also important is building this into the system as it goes. Building those best practices in, building those protocols in, building the technologies in so that you haven't created something where then one stands back and says, well, it is all in place. How do we come up with the regulatory legislative system that is going to address all of this because I don't think it works that way.

To my mind, good legislation percolates up. You develop the best practices and then at some point they inform the creation of good legislation. My thinking is, you know, you start building all of this into the system from the beginning with the motivation being this is what is going to make the system work really well in the end.

DR. DEERING: I wanted to thank the two speakers for coloring within the lines, so to speak, because we told them not to speak about HIPAA in great deal, despite the temptation with the new regs being out and you have really complied.

But I think it would be helpful after the fact for you to perhaps tell us, as I know that the Pew Center intends to do, that you are going to be specifically looking at shortfalls, in the area that specifically impact our report. I think any analysis that you are able to make about how HIPAA would have to be retrofitted to cover some of the areas that are mapped out in the report would be very helpful.

DR. LUMPKIN: And, obviously, not only to this work group but also to the full committee. So, we would appreciate looking at that because it is something the Subcommittee on Privacy will be looking at.


DR. HARDING: Ms. Bruening, when you were talking about the accountability tracking of information, audit trails and so forth, I tend to think that is important but I always get overwhelmed by it when I think of how many audits -- if we have a hundred million people in the health system and they each get hit by a hundred and so forth and it gets to be kind of overwhelming.

How do you -- what is your answer to that? Is it just a sense of taking samples and so forth? How would we deal with the massive amount of data that would cause?

MS. BRUENING: Well, I don't know that that data has to be analyzed everyday. I think it is -- a certain amount of it is -- if that is built into the system, the sense that, you know -- that you can't go into the system without having some record of that having happened is there. You know, obviously, 99.9 percent of health care workers are going to do the right thing and they are going to follow the rules, but I think having that audit trail there in place will sort of keep that .1 percent honest, let them know that if there is a serious abuse that they can be found out.

I think when you are talking about audits, you know, it is also the question of internal audits. You know, the accounting profession is really working toward good accounting practices for privacy, you know, looking at what a company's data practices are, making sure that, you know, their housekeeping is clean, that whatever statements they are making about privacy really do reflect what is going on internally.

So, I think just as, you know, you take a look at the books every year financially, you can look at the privacy books as well. I think that goes to the auditing function also.

DR. HARDING: Just as an example, we had a prominent rock and roll single in my hospital for various medical problems and electronic medical record and did do an audit trail. About 150 people hit on his record from board secretaries to so forth. We fired three people and one intern was suspended for two weeks from his internship for inappropriate access to that record.

So, it is being looked at seriously.


DR. LUMPKIN: I would like to thank the panel very much. It has been a very interesting way to kick off this particular hearing. I would warn you that we will be compiling a set of questions that we will be sending out to all the panelists to try to get some written responses as we are preparing our final report. So, just a word of warning, when you get this in the mail, please, we would appreciate as much help as you can give us in trying to develop our final report.

Thank you.

We are a little bit ahead of schedule. Is Kathryn Wilber here? Or Brett Kay?

MR. KAY: Here.

DR. LUMPKIN: Okay. Why don't you come forward if you don't mind. And Nancy Lorenzi? Nancy.

Brett, if you could kick it off and then, hopefully, Kathryn will be coming in and we will take her when she arrives.

Agenda Item: Panel 1: Stakeholders for Health Information

MR. KAY: Of course, as soon as I put a Life Saver in my mouth is when it is time to start speaking.

DR. LUMPKIN: Actually, I was watching that and that is the reason why I waited until that --

MR. KAY: In any event, excuse me if there is a little cracking in between.

First of all, good morning. I certainly would like to thank the committee for inviting me here to speak. This is an important meeting and I appreciate that consumers are being taken seriously and their perspectives are being considered.

My name is Brett Kay. I am the director of Food and Health Policy for the National Consumers League. For those of you who are not familiar with us, the National Consumers League is America's oldest non-profit consumer advocacy organization, dating back to 1899. We were originally founded on work, such as child labor, pure food and drug laws and sweat shops. We have been continuing to work on those issues for the past hundred years. We were instrumental in passing such bills as the first Pure Food and Drug Laws in 1906, as I mentioned, out of the Food, Drug and Cosmetic Act, and many laws and legislations and regulations in the area of health care.

More recently, we did provide comments to the health privacy provision of HIPAA. I won't really mention too much about what we said. Our comments are available on our web site, as well as in the federal docket for this.

Our goal is to educate and protect consumers so that they can make more informed decisions in the marketplace and workplace. We do this through public education campaigns and advocacy efforts in the advocacy efforts in the regulatory and legislative arena.

We have a great deal of outreach in terms of brochures on our web site, through service announcements and other types of outreach to reach to the community.

I was asked today to provide a consumer perspective to the reports on the National Health Information Structure and the vision for the 21st Century. The question as I see it is this. What do consumers need in order to actively and effectively participate in the health care market place of the 21st Century. Not surprisingly, we need a great many things.

I know that this -- you know, we might be thinking here comes another consumer rant that we want this, we want that, we want this. But yes and no. Most importantly, consumers need information in a useful and understandable manner. We also need to feel confident that the information we provide, which is sensitive and personal information about our health and well-being is secure and will be only used for individual and common good, not for marketing and not to discriminate against.

Finally, consumers need access to the system. We cannot forget that there is a growing gap in the distribution and access to information and resources that is affecting social, economic and physical health of our nation. Thus, consumers, particularly low income and minority consumers need to feel that they are not being left out of the debate.

Let me expand a little more fully on these three main topics, which I will discuss now.

The first is useful information. The majority of the American public have a literacy problem in that they simply don't understand health and medical information and technology and the terminology that goes along with it. Even many educated consumers have a hard time understanding what a doctor or even a news reporter is saying when it comes to health care.

When you add complicated messages and data, such as statistical information about subpopulations or risk ratios, most people's eyes just simply glaze over. Even if they do understand the information, they may not be able to put it into context. I think this is the real crucial point here about providing useful information. It is not just getting accurate data.

It is about showing why the data is important and how it affects an individual's life. For example, there are many score cards rating hospitals and providers for quality indicators. One such indicator is mortality rates. For the average consumer, if they see that a certain hospital has a high mortality rate, they may think there is no way I am going there. People go there and they die. But what they may not know is that the hospital is actually the best -- may actually be the best hospital and as a result, they are getting the toughest cases.

Without that kind of a context and explanation, they won't know this. To a lay person or another one is that a hospital performs a great many surgeries and is very successful at it; whereas, another hospital next to them is not as familiar with doing this. Most people wouldn't know that the hospital that uses more -- that does more of the surgeries will, chances are, have a better success rate as you and I would be aware of, but most people won't.

So, what I feel are important factors that the National Health Information Infrastructure can highlight, however, the context for the significance must be provided. Otherwise, most consumers are not going to be able to use this information effectively.

Another important aspect of the useful information is consistent information. Reports highlight the need for consistent platforms and standardization of reporting and technology. I think the same needs to be true for the information related to the public. Currently, there are no consistent terms for many health-related issues or data. Numerous quality care measures and other measures and other things are used with different explanations for the same things.

It is no wonder why so many people are confused. One analogy that I like to use is that the health care industry sort of needs to be more like the auto industry. What I mean about this is when consumers shop for a car, all the quality measurements and all the things are standardized; miles per hour, horse power, fuel efficiency, pricing, et cetera, across the various makes and models. Consumers are able to make an accurate and informed decision across various different options because they can easily compare one product to another because the terms of the debate are the same no matter what, whether it is a Ford, a Chrysler, a Hyundei(?), a Mazda, what have you.

Unfortunately, this is not the case with health care. I think that it can be and it certainly should be, but we need to keep that in mind when we begin to start developing this in the future, that there needs to be a standardized platform, not just for technology, so that computers can share information with each other, but with the information that gets out to the public so that they are able to make rational decisions as well.

The need for privacy and security is certainly vital to consumers if they are to buy into this new system. I know that the panel before me spoke a great deal about this, but I would just like to take a few moments as well.

There are already a great many growing concerns about who has access to sensitive medical and health records and how they are being used. Despite promises to safeguard sensitive data, many consumers do not the trust the technology, nor do they trust those who control much of the data, such as insurance companies, employers, financial institutions and even the government.

Too often breaches have occurred. Identities have been stolen. Private records have been accessed and distributed and individuals have been discriminated against because of these. Because further electronic information is new to many consumers, it poses near fears, whether they are rational or not. Perception is reality to a great many people and we have to treat it as such if we want consumers to opt into this new vision of health care, based on information and electronic data.

Because if consumers do not agree to allow their information to be shared, despite it being de-identified or anonymous, there will not be any kind of National Health Information Infrastructure. Thus, we have to do a better job of assuaging consumer fears and perceptions about technology and how it will be used. This means more than just soothing over things via public relations. It actually means creating real safeguards in a technology itself and in the political policies drafted into law and regulations.

We need to enact strict federal standards that will protect personal health information and penalize those who violate it. I am encouraged to see that both reports do pay close attention to the issue of privacy and patient confidentiality, but as we know, many good intentions have been distorted in the political process and we need to keep that in mind.

The third main issue, which I mentioned was addressing the disparities that exist between the haves and the have nots. Technological and electronic access is the goal. We cannot forget about the population that currently does not have access to technology or other advantages of the modern economy. A gap already exists in health knowledge, access to health care and coverage for services.

It is mostly based socioeconomic and racial conditions. This is true at the individual, as well as the institutional level. While many poor, rural and inner city consumers lack access to computers and high technology and medical treatments, so, too, do many local governments and health care facilities in these same rural and inner city locations.

Many local health care agencies and hospitals are struggling to make ends meet and they don't have the ability to make the necessary investments to upgrade their information systems, putting both them and their patients at risk. The goal of the national committee is to develop an integrated system of health information, standards values and laws to make health decisions at the individual and societal level more meaningful and productive.

This is certainly a worthwhile goal, albeit an ambitious one. The reports certainly rely heavily on technology to make this happen, but as we should all know by now, technology is not the panacea for all our ills and it can't be the end all, be all.

It will be how we use the technology that will be important not the actual technology itself. We cannot forget that just because we can do it doesn't mean we should nor does it mean that people will want it. In an era when life seems to be moving faster and faster and everyone is more hurried for time, it is going to be hard for people to take time out of their schedules to be able to monitor their health, despite the ease by which they may be able to do so.

The scenarios that were in there were people using risk monitors and all kinds of global positioning to track health care with their doctor while they are out in the country hiking and other various things through the Internet and with their father and so forth, are certainly quite useful, but for the average person, I don't know if it is going to be realistic, given the time constraints or really the burdens that are being put on people's time currently as they exist.

What we are going to have to do is change people's priorities. Generally, most people don't think about health care issues until they are really sick and we are a reactive sort of not a proactive culture when it comes to health care. The health care system, in fact, is designed to reflect as an acute care system, not a preventive one. So, if we don't as a culture perceive the value and the service, then it will go the way so many sort of great ideas and innovations, which is unfortunately down the drain.

So, the question becomes then how can we get people to value health care and prevention as a societal and personal good? Unfortunately, I don't have the answer, but maybe there are some lessons that we can look for out there. Maybe we should take a lesson from Wall Street, for instance.

The financial community has had great success recently in changing people's attitudes about money and investing and reaching out to the ordinary everyday consumer. Following stock markets has sort of become our new national pastime. You know, the ups and downs are reported on the evening news, the various cable channels, dozens of, you know, commercials and brokerage firms and even cell phone commercials are touting the ease to, you know, check your stocks anywhere.

So, how did they do it? I think what they do that is important for this is that they make people realize the direct connection and a positive outcome from active engagement in the process and from the importance of useful information. That is the key. People saw that there was all this information out there and that they could benefit from it. I think we need to look at that as a way to get these health statistics, vision for the future.

Of course, health care is a trickier proposition. It is not as sexy as the stock market and there are not the immediate profits, as most people see it. Money, you know, is a valued commodity, but, unfortunately, health is not. Prevention is not seen as a worthwhile goal at the national institutional level currently.

Managed care, for instance, which was originally conceived as operating much in the same way as the NHII is was an integrated care model, based on information technology and data, you know, keep people healthy through prevention and treat the sick in a more effective and efficient manner, based on utilization review and other technologies. But, unfortunately, the model sort of became distorted, based more on cost containment than health prevention.

The problem, of course, was that there was no incentive to practice this through managed care, based on prevention and de-state management. So, what happens is that the free market would sort of favor the lower prices more than anything else. So, the health plans would have a high turnover rate. Thus, there is no real incentive to invest heavily in the prevention.

I would like to just throw it a little further now to -- the reports made some broad assumptions that I am not sure are totally realistic. They assume that people will immediately see the good in the seamless system and will willingly participate.

The question I have to ask is why should people put all their information into a personnel health record. The question still -- you know, are consumers willing to upload and download and otherwise access such a system. There are already a great many web sites that are designed to keep personal information in track, providers, appointments and a host of other health data that are failing or have failed already or are in trouble.

It may be that people are not ready to let go of so much personal information, especially with the privacy concerns that exist and the ease with which the data can be accessed and distributed and used.

So, I see that there are two major issues that really have a direct impact on how viable the system will be in the future and that is time and trust. People are being squeezed for time more than ever and another burden may be too much. If you combine this with the time pressure -- combine this time pressure with a genuine concern for personal privacy, I think some real barriers begin to emerge.

As the report states, individuals will have to accept more personal responsibility for their own health and I think this is a double-edged sword. It is certainly beneficial for the individuals to have more of a say in their health care and be a part of the decision-making process. But if the burden becomes too great, particularly in a world where everyone is already being overburdened and it will backfire and many consumers will withdraw from the system.

Also, as more and more onus is being put on the consumer for health care, many consumers still lack the skills and information to make appropriate health decisions. This goes back to the issue of context and the old model of the sort of learned intermediary, the doctor, making decisions with no questions being asked, being radically upended and consumers are now suddenly expected to be their own advocates and their own ombudsman in their health care system. We have to make sure that consumers are given the proper tool in the appropriate context and give them information that is easy to read, easy to understand, make it culturally sensitive formats so that it is useful to them, so that way they actively and effectively participate in their own health care.

Finally, I think that we need to address -- and I mentioned it earlier -- the current problem of the disparities that are existing in our society as a whole and within the health care arena that means that people are going to fall even farther behind if we move fully in technological solutions that require sophisticated skills and higher educational levels.

The gap between the haves and have nots is already too great. So, the question is what will happen in the future depends on how we deal with the problem now. As I said, technology in and of itself is not the answer, especially if large segments of the population are denied access to that technology. Ultimately, it will need the distribution and application of the technology and data that will solve our current health problems.

Thus, we need policies intended to truly serve all the population. In order to influence the terms of debate, we are going to need sound, unbiased scientific data and research to demonstrate the need for the programs and policies, such as this National Health Information Infrastructure. But it is more than that. There is going to be some real need for public education programs to press the importance of these programs to the general population in order to get them to understand why it is effective, why it is useful and why it will have an impact on their lives and be something that is worthwhile; in other words, you know, to make it a valued commodity.

So, in conclusion, I would just like to say that as the report states, advances in the personal health dimension of the NHII will allow individuals to make health care and wellness choices that are better informed and more beneficial for their health. However, if individuals are not convinced that better health in the NHII are a priority, they will not use the system and a major component of the system will be lost.

Without the proper public education campaigns to help consumers better understand the context of wellness and proactive health care systems and information, many consumers will remain disillusioned and fearful of it.

Thank you.

DR. LUMPKIN: Thank you.

Ms. Wilber, welcome.

MS. WILBER: Thank you. I apologize for --

DR. LUMPKIN: We actually started a little bit earlier than the stated time. So, you are on time. We are just early.

MS. WILBER: Thank you.

I am Kathryn Wilber and I am executive director for private market regulation at the American Association of Health Plans. AAHP is the national trade association for health plans. Our members cover health benefits and deliver services to about 140 million Americans.

These issues of information exchange, standardization, confidentiality and privacy, security, are all of paramount importance to our members. Health care delivery today is more and more a team endeavor, if you will, involving many, many, often different entities and individuals. That approach depends on responsible information sharing.

So, we took a look at the document as we were asked to do and found it to be an impressive one. My remarks are largely confined to the National Health Information Infrastructure paper.

Of more interest to our membership, though, is getting there. How do you make a vision workable? Our membership has had some experience with that in the sense of an NCQA report of 1998, National Committee for Quality Assurance, which is the accreditation body for health plans and which has been at the forefront of the development of performance measures, such as HEATUS(?).

A couple of years ago, NCQA became concerned about the progress of HEATUS and a barrier that it saw to that progress and that barrier was information systems. I see some nodding of heads. I won't go through that in detail. I would recommend taking a look at the report. I think it is enlightening -- what the report indicated is that information systems really needed to evolve to information frameworks and had to include characteristics like data quality and automation, as well as security and confidentiality and that when they have looked around in our industry anyway, there were no such systems at that point.

They listed some difficulties and the difficulties that they came up with are in some respects quite similar to the barriers that are listed in your report in the very beginning and those have to do with a fragmented marketplace, competitiveness, again, probably at the front, the privacy issues, the security issues, the lack of standardization

NCQA was optimistic about the ability to move forward despite those difficulties, but many of them remain and, in fact, you have encountered them as you went through your discussion. Our membership and we at AAHP are probably most committed to try to finding some solutions. I am not coming to you with specific recommendations as to how to do that. Clearly, we have come some distance since 1998. We now have good news in publication regulations, which, in fact, may serve as some sort of insight or view into the future as you try to move into this more larger picture of an information infrastructure.

I can tell you that as somebody who is currently reading 1,300 pages of privacy regulations and I am certainly not alone, the bigger problem is probably understanding much of it, is going to be in and of itself a major task for us and our members are covered entities. We are committed to it. We certainly recognize that that has to be dealt with before we can move ahead with the kinds of changes that we all want to.

But transaction standards are another example. We frequently have health plans whose information systems don't talk to each other internally, no less talk to external organizations. We encountered that in some of the consolidation that occurred over the last couple of years in merger and acquisitions. Those plans, in particular, are having a real challenge in moving toward the transaction standards.

I am going to wrap up with that. I would note, though, that we observe that health plans were rarely mentioned in your report and were not listed as a key stakeholder. Given the role that they are playing and that they are asked to play in terms of collecting data and transmitting that data, we would ask you to reconsider that omission.

We certainly welcome opportunities in the future to come back to you and talk about some of the things that I just went through and other issues that you are interested in.

Thanks very much.

DR. LUMPKIN: Thank you.

Dr. Lorenzi.

DR. LORENZI: My name is Nancy Lorenzi. I am from Vanderbilt University and I feel I am sort of a -- kind of a different person on here. I am not representing a national association, even though I am on the board of directors of the American Medical Informatics Association.

Part of the reason I think I was asked to be here is that I have several books on managing technological change and putting the people in that change. So, it is more of the peopleware(?) side.

What I would like to do is address the types of comments -- I have gone over the reports. They are excellent. So, I have titled my presentation to you is "When We Build It," because I believe we have the technological know-how to build it -- "Will They Come?" Now, a lot of what I am going to say will sound like what Brett and Lee said earlier because I did not have their presentations, but this is from my perspective in managing the people side of the technological change, what we need to do. So, the changes in our health care system during the next decade are going to make the last 20 years seem like the good old days. We have not yet had major changes.

Health care still is a cottage industry, even though some of us have worked for years to make the technology more sophisticated. The past 20 years have seen tremendous changes; new drugs, new devices, new techniques. These changes will certainly continue, but the true mega-changes of the next decade will center around gathering, managing and using clinical information.

This prediction will prove true for all of the health care areas, administrative, clinical, teaching, research. The truly reengineering of health care information management infrastructure has hardly begun. The press for improved access to health care, the expectation of having health care provided at lower cost,t he development of vertically and horizontally integrated delivery system, the emphasis upon wellness and then transition to medicine based upon the understanding of the Human Genome Project are creating dynamic changes in roles and responsibilities in the health care system.

In my opinion, there are four cornerstones that form the basis for developing a new information management paradigm. These cornerstones represent knowledge expertise that extend well beyond the skills associated with traditional information systems. The cornerstones rest atop the required technological infrastructure. So, we are going to have the technological infrastructure, these four cornerstones, come on top of that.

We do this in an academic sense -- and I am going to come back and talk a little more about what these mean in the real world. One, producing structures that represent data and knowledge, including terminology and standards. We need to understand what the terminology is. We need to understand the standards.

Developing methods for acquisition and presentation of data, managing change for optimizing the use of information and integrating information from diverse sources with confidentiality and privacy protection into collective resources that will have more value than the sum of the parts.

Visions of the future are grand and exciting. As the committee well knows, each of the listed cornerstones that I just said have many barriers. These cornerstones that I mentioned fall into two groupings. On one side are the infrastructure, the technology, the standards, the terminology. Those are the things that we in the medical informatics world -- and you have got Dr. Shortliffe, who is one of the international experts on your committee -- are dealing with those issues.

On the other side are those that affect people, their needs and their rights; what can or cannot we do with this terminology. For today's presentation, I want to focus on the side that represents the individuals and talk about what we might do to lessen those barriers in the future. So, I could talk a lot about the other side, but I think right now, I want to really focus on the people side.

So, I am calling this the reducing the people barriers. Listen to the patient. He is telling you the diagnosis. This message is taught in medical schools around the world and it focuses on the patient-centered practice of medicine.

A parallel could be stated about our visions for information technology of the future. Listen to the people. They are telling you what will work for them. I was interested that the Pew Foundation did their surveys on data completed. As part of the intelligent process for progress we need technologically aware and conceptually gifted people to visualize the scenarios that might come to pass. However, when talking about information technology in the health care area, it is important to realize that the implementation may lag behind the removal of any barriers imposed by the technology. Health care implementations of IT take place in an environment that is extremely heterogeneous, of numerous perspectives, within each -- the patients, within the providers, within the payers, et cetera, each group is very, very heterogeneous.

Within each of these subgroups, the attitude toward particular technological changes can be incredible. Sometimes they are even fairly hostile. There is also a group of people who have never used an ATM and they never intend to. The message of the "Field of Dreams" was build it and they will come. To the extent that this has worked in the technology area sometimes, however, the real message is often build it and a reasonable number of people will come, which is what I heard in the Pew presentation. They were studying the reasonable number of people that came to the table.

For example, in the for-profit sector, this might mean enough people will come to yield a profit. In contrast, the issue may mean many health care areas in the

-- excuse me -- in contrast, the issue in many health care areas is that those who come and those who can't or won't must be provided for. So, in health care we don't have the luxury of only taking care of those people who like technology. We have to take care of everyone, whether they have ever used technology, whether they believe in prevention, et cetera.

This means that multiple systems will often to be provided whether efficient or not. Marketing people think in terms and talk about benefits. Technology people think in terms of the features. Think about this when you go to buy your own computer system, what features does it have.

All but the most technologically oriented users care about benefits not features. We are saying that our end users, our consumers, think about the benefits. They don't care about the features. Even when people are attracted to gee whiz features at the time of purchase, they rapidly settle on using only those features to benefit them, including not using the device or service at all. Think about the technology that you have personally purchased that may be sitting on the shelf somewhere.

Many of today's clinical systems can only promise long term benefits to patient care at a cost to short run physician productivity. To physicians, who tend to think in short run terms and who are often compensated in the short run terms for their current productivity, these systems may have little attraction. Consequently, they can often be implemented only when the physicians are direct employees of an organization, implementing the system and perhaps even difficulty with them.

The Army has the best chance of implementing major computer systems and they still have information systems that fail because of a lot of the behavioral factors. The elderly in the U.S. today are a very heterogeneous group. It is estimated that nearly one-third of the households headed by someone over 65 have personal computers, used primarily for e-mail and obtaining health information, managing financial matters.

The same group contains at least a large number of people who have no comfort with anything beyond the simplest of technologies. Introducing technology to the latter group will typically require a technology with no required user interventions, such as automated monitoring devices. Even then, the issues, such as failure to carry or wear may be encountered. So, if I am suppose to be wearing something and I forget it on a regular basis, it negates the entire system, as the one scenario had.

For technologies requiring user action or response, the amount of training and support may be high. In other age groups, issues, such as difficulties with English, functional literacy, mental illness, can make systems implementation very difficult or expensive. Again, one only has to remember the number of VCRs that have never had the time set correctly. Even among those with the ability to learn the benefits, you have to be obvious.

I made up my own rules for success. So, for almost ten years, I have experienced, studied and written about the people side of technology transfer. This includes why information systems fail. With my co-author, Dr. Robert Riley, we have said over and over it has become obvious in recent years that successfully introducing major new systems into complex organizations requires an effective blend of good technical and good organizational skills.

The technically best system may be woefully inadequate if its implementation is resisted by people who have a low psychological ownership in that system. On the other hand, people with a high ownership can make a technologically mediocre system function fairly well. This is true for organizations and it is true for the NHII as well.

So, if I had my wish list, I would create a people support system. Remember at the end of a letter, there used to be this P.S. Now I have a P.S.S., people support system.

For technology implementation plan, we need to create this people plan that would be parallel to the technological plan. So, as we are doing our technological plans, we need a people plan.

Several of the needs -- and this is going to sound a lot like what Brett said -- several of the needs for success for the NHII, for this people support system, include the following -- and I am going to come back and talk about these. So, I want to go over the six areas quickly.

One, having quality information available for people to use.

Two, having information systems that acquire and present information in a user friendly and easy-to-use way. That is my second cornerstone.

Three, having security and confidentiality protections in place.

Four, having non-technology systems in place to deal with the questions that will arise.

Five, clearly understanding the benefit of the NHII to our many populations and, six, having appropriate incentives for each population.

These six support components require changes in how we view financial operational and technical and public policy issues. Let me go through these and just mention a couple.

What do people want? People want quality information. People regularly make decisions about their personal health. They would like the best information possible in the easiest-to-understand manner. Now, what does this mean for the issues that you are dealing with. In my opinion, this needs a process or a system to identify and increase their quality information.

So, if there are 1,700 sites on the Internet, what is the quality information. So, that is the process. Now, we know that is HON, Health on the Net, out of Switzerland, that has gone through and given a HON feel, Health on the Net, to some sites. But it can't keep up with all the sites that are there. So, that is something that we need to consider.

We need a process system to identify unsubstantiated information on the web. That becomes a hard one with our freedom of speech issue, but there is some medical information that you can tell that is not really quality.

Second, people want to have the information systems -- they want information. They don't want to have to figure out complex things. They want it easy to understand, easy to acquire, easy is the word, intuitive. So, we need research into human-centered computing, presentation of information, user friendly data collection.

The Federal Government has started to put more money into human-centered computing, but I think we need to have more of this kind of area looked at or those of you on the committee may need to look at what is happening in the human-centered computing to find out what needs to be done for the acquiring and presenting of data.

People want non-technology systems to deal with questions that arise. This is sort of hand holding 101. What if I did go and find this information? Do I have to wait until I go to my physician to say, look, I have all this information? Or would it be nice to have -- to call somebody to say I have this kind of information, am I on the right track, et cetera?

So, given the complexity of our health care system today, how can we increase the quality and amount of human-centered support systems without necessarily putting the burden on the physician during the time of the transaction, with the patient/physician transactions. People want to be assured that security and confidentiality protection is in place. We have HIPAA now, but a lot of the systems that are out there that say put your information in and we will maintain your personal records. That is a trust. Who is at the other end of that that is collecting this?

You could tell they were going to fail before they ever started because of the trust factors that were coming up. So, if I know the security, I will be more willing to give my information.

We need to clearly understand the benefits to our many populations. There is a different benefit to each population. I may want something because I come out of this population. Others may want something different because they come out of a different population. I don't know of research that is going on into what are the benefits of the various populations. Others here may.

We need incentive and that comes down to -- we need incentive for what is going to work for each population. I don't know what those are, but we do need some of the research, maybe based upon the Pew Foundation. What were the incentives for the people that aren't on the system?

For example, you know, if -- do they get a reduction in their health care costs? I don't know what those benefits or the incentives are, but people need incentives. Sometimes it is so small, giving them a cookie and not the technological kind could get them to do a lot more work.

Finally, if we do not have the time and money to spend on the people side of technology transfer, we will continue to spend lots and lots of money and have information systems that fail.

I have attached onto the back of your handout an article that is abstracted from The Journal of the American Medical Informatics Association on managing change and it is an overview. So, this is extracted from one of the professional journals and I thought you might like to see that.

Thank you for your time and congratulations on your great work.

DR. LUMPKIN: Thank you.

Questions from the committee?

DR. SHORTLIFFE: All the discussions have made me think a little bit about -- and especially, I guess, your comments, Nancy, made me think a little bit about -- and especially, I guess, your comments, Nancy, made me think a little bit about the grass roots versus a grand plan through the role of the managers, the leaders, the opinion leaders in organizations or in populist environments as well and ho some of the kinds of changes that we are talking about actually get implemented effectively.

This doesn't apply to all the points you have raised, but certainly in terms of hostility or resistance to change and the like, I have become in spite of what we see with the web and the way it sort of took off as a grass roots activity -- I have become convinced that organizational adoption of technology, in general, doesn't work that way, certainly not in health care, that it usually takes sort of impassioned leaders with vision, who recognize things like incentives and the like, but frankly put requirements into place that almost force people to overcome their own resistance and then, hopefully, get them to a place where they say why in the world was I ever resisting. I needed this and I never knew it and I -- you know, people told me I needed it, but I didn't believe it.

Now, thank heavens, you forced me. Now, forcing with a stick and the like doesn't perhaps conjure up quite the right image, but I actually think this distinction has to be understood and discussed quite opening in the health care setting in general. This is much more, perhaps, on the practitioner and health system, health plan side than on the consumer side where people are rushing to try to find information in a self-motivated way, sometimes reaching resistance.

But I would be interested in that. I mean, my own observation is and my own experience has been that, you know, I talked to people a lot in the late eighties in my medical school about why they should be using e-mail. Nobody got it. I mean, I could not get people to use e-mail and then suddenly I worked my way up in the hierarchy where I was actually in charge of a unit. Finally, I could force them to use e-mail. I could do it by basically stopping using paper memos, after I made sure that people actually a computer on their desk, they had access, they couldn't say they couldn't at it and we had a simple e-mail system.

To a person, they told me within about six weeks, oh, this is -- you know, and then it just took off. I mean, it was easy actually and I knew that -- I guess my commitment or belief that it would be was what motivated me to actually take that risk and do it.

That was a real lesson for me and it is one that I am not sure all institutions have really caught on to. it seems to be an important part of the mix that is not totally addressed by your comments, Nancy. I would be interested in your reaction.

DR. LORENZI: That works some of the time, but about the other 95 percent of the time, that is not the way to go. I have stories about hospital information systems. I will give you one in particular.

The system was called OSCAR. This has been written up widely. It happened in Canada, but it could happen anywhere. OSCAR was the on-line communication arcable(?) retrieval system. They installed their system unknown to the residents in an entire hospital. It was a hospital with about 400 residents.

When the system came in, it was like here we are going to train you on this and now you are going to use it. What the residents did is they went out and bought the buttons with the international "no" sign across it and they stopped using OSCAR.

So, the issues that -- there is a combination of things. Somebody needs to have the vision, which is what you have here. But once the vision is in place, you also need a series of champions and when those champions would be -- it could be groups. It could be inside an organization and there are usually people who are recepted by others and they come through and they sort of say this is going to work.

When you are in implementation of systems and it gets so complicated -- what our whole books are about -- any time when you are on an implementation that the hospital ward clerk could shut down that system, if the hospital ward clerk at that time doesn't believe that this is going to really change that person's job.

So, you have a lot of deviant behavior. Ellen Dowling, a Ph.D. at M.I.T., found out that a hospital information system, different than what we are talking about today, was installed in both for-profit and not-for-profit organizations, there was as high as 35 percent sabotage rate to the information in that system.

Now, those aren't necessarily the physicians and this is documented in his dissertation. Some of those actually be, you know, not filling the paper. It could be to be more destructive. So, we have a lot of things that are out there and that is where it is a balance and you almost need to diagnose what it is. In talking about the NHII, you have the vision. Now you are going to need to engage in this private/public partnership with some of the groups that are represented here today and say how can we get to -- what can we do that is going to move this forward that is going to engage this.

We may engage one population at a time. Maybe the over 65 population that I mentioned in here is a population that we aren't going to engage or maybe we are going to engage. I don't know. But I think we are going to figure out what is going to be important for those people. We have got some technologic -- we have got the technological things and the quality in presenting the information and if we can acquire and present information in easy ways, quality information that would be a lot easier for these folks who are out there dealing with consumers to do what they are supposed to do.

That is a convoluted answer, but --


DR. DEERING: Well, first to reassure that the omission of health plans from the report were certainly not a conscious omission.

DR. LUMPKIN: I thought we had decided like in our vision of the future they weren't going to be there.

DR. DEERING: Actually, I had a question more for Brett.

If I could paraphrase what you said and what I think we have heard before, it has to do with making people value both individually and within the health system, personal management and health and prevention, et cetera, and as you have pointed out and we all know that the marketing centers work against prevention in health care provider institutions despite many of our best intentions.

On the other hand, would it be true that consumers both are more likely to and, as a matter of fact, see more benefit in prevention oriented approaches and that you might, especially from the National Consumers League, be able to look at other areas because certainly the concepts of prevention exist in other sectors.

Are they -- you noted that we have to perhaps sell them on these concepts to get their buy-in. Do you think it is going to be a hard sell and do you think it will be harder for the institutions than it is say for the users?

MR. KAY: I think part of the problem with it is that consumers, like any other group, is incredibly heterogeneous, as Nancy had said also. Some consumers you don't have to sell. They are already actively engaged. That is why there are so many web sites out there for health because people want information. If you look at dietary supplements, for instance, as sort of a tangential experience, there is a great many consumers who are looking to these. This market has grown tremendously, despite the fact that there is not even a lot of good clinical evidence whether these things will work or even if they are safe in some instances and, yet, people are taking them on, you know, sort of word of mouth and on hearsay and on commercials saying this will make you feel better. This will keep you healthy. This will prevent, well, you know, all kinds of problems.

So, there is this one segment of consumers that are very active and engaged and want to do this and see prevention. Then there is another segment that would like to do some things and probably basically get the idea that, you know, stopping smoking or eating better or exercising more will be good for them, but just don't necessarily know how to do it or don't have some of the time to do it, whether it be because, you know, they have kids and they come home and they are so busy and, you know, they work and then they have to deal with the kids and by the time they are done, they go to sleep and then get up for work or in certain areas you have to considerations of safety.

It is not safe to go out and walk in your neighborhood or there aren't parks or there aren't even sidewalks. Then you have, obviously, a sort of a third segment that just, you know, that aren't motivated at all and don't see a benefit. They are living their life. They are fine. Their grandparents lived to a hundred and doing all the wrong things. So, they will be fine, too.

So, the problem is that there is really a lot of segmented groups and to sort of lump them into one is difficult. I mean, I know I did in a certain sense by saying consumers is a broad category, but really there are many heterogeneous groups within that that can't be defined as simply.

But I think that there is going to be some hard sells to some people. Some segments of the population will go right along with it immediately and they will be saying what took you so long. We have been ready for this forever. But others, I think, they are going to need some coaxing and if we do it in a way that it is non-judgmental, a lot of, I think, what the backlash now has been especially toward things like dieting and exercises; you know, you need to do this because, you know, and it is sort of shaking a stick at people and making them feel like all along they have been doing something wrong, you know, that it has almost been sort of criminalized in a way.

If we can do it in a more non-judgmental manner, this is going to benefit you because, and make them have a sense of ownership and make them feel like this is going to benefit them, their children, their community, what have you, that will get people along a lot faster than you should do this because it is good for you, which is not a particularly effective -- if you tell them "no," you know, they do the opposite.

MR. HUNTER: I had a question for Nancy and it is on the same line of -- you know, the take up of technology and my theory is that the single most powerful force for technology diffusion is a man named Ernie that my father used to work with. I get a phone call once a week saying, well, Ernie has this on his computer or anyone -- or when are you going to come over and put this on mine.

I actually see that in our organization as well. Somebody uses something or other and comes next door and then all of the sudden you have to buy, you know, 200 licenses. And that is a positive thing and a negative thing. I guess my question -- applies to organizations on a personal take-up site, on the -- you know, getting consumers to use this, which I think is really important because you then get them to see the benefit of the information and the sharing of information and the whole thing kind of -- how do you deal with take up when there is no real organization and we don't have organized -- in fact, in a way, we don't have organizations that consumers go there, aggregated in some ways that you can actually deal with them as users?

What is your --

DR. LORENZI: That is what I was alluding to when I said that they are so heterogeneous, that we really need to segment the various groups. So, you then start to find out what groups are going to be -- maybe the doctors with the information and you go after those first. I said maybe it is not going to be the over 65 population. Maybe you go into community centers and maybe you go into schools or you go into some other population groups and you look at what is our vast heterogeneous population that we have and maybe in one particular population there are certain strategies that would work effectively for that population.

And we do that. But that is going to take some of the research that if you find out, okay, in this particular consumer group -- and I will take Hispanics, which is like the largest growing population, minority, in America -- what is going to penetrate the Hispanic group? Where can you get through to that group? What are the benefits? What are not the benefits? What is important to them? If you did the research on that, then you could find out who the Ernies are of the Hispanic population.

I mean, those are the kinds of things. It is not going to be -- the types of things I am talking about are similar to being a physician. If I come to you as a patient, I have heart problems and I have blood pressures and I have whatever, but they are all different. Every patient is unique. So, every user group is to be more unique. Which one -- what is going to work with this particular user group will depend upon its blood pressure, will depend upon its heart rate, will depend on its dah, dah, dah, dah, dah.

So, those are where we -- when we are going to introduce the information on the information highway, we really need to start looking who are the end consumers and how can we study who they are and what are going to be the incentives that would be better for that particular group because some incentives will be better for some groups.

Offer some groups who have health plans, you know, 5 percent off or 10 percent off on their health care, it may not mean anything. Offer another group 5 percent, it would be significant. I don't know. Those are just the things that we need to really research.

DR. SHORTLIFFE: There is a question that maybe would have been appropriate to ask when Lee Rainie was still here, but let me have a reaction to it from your own experience. It plays off of a point that you raised, Nancy, and that I have often encountered in talking about the web and consumer's perspective on the web and this has to do with this issue of quality control. You sort of bemoaned Health on the Net's ability to provide oversight. Actually, they don't provide any oversight, I don't think. They have a logo, which you are allowed to put on a web site if you follow their guidelines, but they don't go out and check out web sites.

DR. LORENZI: That is the only one that I know is doing something.

DR. SHORTLIFFE: Anything at all.

I sat in a few, you know, meetings where professional societies or the National Library of Medicine or other groups have talked about whether or not they should be custodians for health information on the web. And everyone is afraid to death of taking on that responsibility. It seems so huge.

But when you look back to the world of print that predated all this, consumers have always been able to get really bad information in print, too, in magazine articles and, you know -- so, this is not a totally new phenomena. What seems to be new is the issues of easy access, the sheer amount of it and the reason that I wanted to raise this is Lee Rainie made the comment that the people that they surveyed at least, basically he felt couldn't tell -- couldn't distinguish between a web site that was New England Journal versus one that was clearly suspect.

I wonder if you believe that is true. It seems to me that consumers admittedly, depending a bit upon their educational base have learned even in the print days to be quite discriminating and then sort of know what is authoritative or seems to come from a reasonable professional sources, as opposed to a suspect one. I have been sort of reassured by just the sense that at least educated people -- and I agree that in health care, we may be kidding ourselves when we say anybody is that well educated because of the complexity of the topic for the average American or average citizen of any country.

But I have been somewhat assured that since this phenomenon has been around a long time, that people have sort of developed coping mechanisms for identifying what is and isn't good. Now, we hear people complain that they sometimes have trouble sorting through things on the web and deciding whether to believe something, but as I said, I believe that has always been with us and I am not sure this is a new issue.

MR. KAY: No, I don't think it is a new issue at all. I mean, there has always sort of been hucksterism and so forth and fraud and just generally bad information that may even be well-intentioned. But as you said, I think now it has eased. It is out there in sheer amount of it, chat rooms and things are, you know, responsible for reporting all kinds of really bad, you know, anecdotal evidence in cures and things that -- that is certainly nothing new. It is just now it reaches a million people as opposed to, you know, 10,000 or a hundred or whatever it is.

I think the majority of consumers are generally pretty wary, especially because in this age of where advertising has become so ubiquitous, people sort of know that a lot of things are ads or that are promotional in base and generally sort of, you know, have a momentary at least bit of caution or take things with a grain of salt when they are reading them.

However, people are still falling for things. I mean, we have a fraud information center that we operate that takes -- originally started with telemarketing calls and now has moved into Internet thought as well. You wouldn't believe the things people fall for or get taken on over and over and over again, you know. So, it still is out there.

The FTC has been working tremendously hard in the area of health care recently, and especially dietary supplement and other kind of sort of health, you know, treatment -- so-called treatment out there on the web, going after a lot of things, just trying to -- they take these surf days with FDA where they just surf the web and look for all kinds of things and, you know, send them.

So, some aren't -- the problem is it is easier to make it look real. It is kind of like TV, you know. People believe things they see on TV. Why, I don't know. But they do, you know. It is just the way it is because it is like seeing is believing. So, they see it on TV. They believe it.

The same thing is becoming more and more so, I think, with the web. People see it on the web and they say, oh, yes. That seems good. You can make any web site look efficient. You know, it is so easy to do, that people sort of see it and think because it is new, it is a new, exciting thing, oh, it must be good out there. That is the danger. When people, more people get used to it and realize it, I think, it will start to -- the filter will kick in more the way that print did as well. I think it is still the novelty.

DR. DEERING: I would just make a point of clarification on that. For those of you who aren't able to stay this afternoon, Bette Crigger, who is -- would you raise your hand, Bette -- is going to be talking about codes and ethics that are being developed and there are several and some of them have real teeth and there is quite a significant effort underway there. So, if you are leaving, make contact with her and she can sort of bring you up to -- you know, on some of that.

DR. LUMPKIN: Richard.

DR. HARDING: Mr. Kay, you brought up the issue of disparities of access to health information and so forth and we can talk a little bit about the -- you know, perhaps just using an example of the Medicaid population because of socioeconomic status may not have the same access to Internet and so forth, as others.

I think Mr. Rainie mentioned that there were subgroups in his study that had less comfort level or acceptive level or whatever it was called and he said parents and maybe African Americans and a couple of others

-- I can't remember the details. What does that mean for us? If Dr. Lorenzi, too, would comment -- are we going to have a -- we are going to have a bunch of different approaches, it sounds like, to the education and acceptance of any system that goes on. How does that -- how many prongs are we going to have to have in our process as we get started?

MR. KAY: That is a good question. Unfortunately, like many others, I think people are still trying to figure it out. They still haven't figured out completely how to reach all the populations effectively. But one way that we do know is effective is that you have a population with possibly like the lower literacy skills, for instance, you can't write something that is designed for college-educated people and expect that they are going to look at it and use it and have it be meaningful.

For the Hispanic population, you have very different requirements and very different sort of cultural background of how they interact with their health care system and with doctors and so forth. So, you can't have a brochure, for instance, or a video or whatever it is with a picture of sort of a white person interacting with a doctor in a way that is sort of more European centered.

You just have to sort of find ways that are more approachable. That makes sense. I know that there is a lot of work out there that is being done on this. There is a great deal of studies and so forth on how to be more culturally appropriate, et cetera. But I think the challenge is just -- the first challenge is identifying that there is this gap and that you need to be aware of it.

A lot of times, you know, the government and other things put out things -- all kinds of groups are guilty of this -- of putting out information without realizing that the consumer and the general public isn't just -- the public, there isn't just one face. So, I think that is the first major stage of it really.

DR. LORENZI: A very similar -- my suggestion for this group is to -- when you do your vision, to have that people plan and the people plan part of it will be that we need to understand what the different groups are and just as every patient comes to you, has a number of uniqueness, we are looking at every population group that may have a number of unique points.

Those may segment into patterns later on, but I don't know and haven't spent enough time to find out what those patterns on. But the answer is "yes." If this -- if we want to have the information from the NHII available to everyone or at least as many as possible, then we are going to have to look at what is going to pull them into this in some way.

Again, it will also be in the adoption or spread of technology. Some of us remember when there wasn't the VCRs out there or some of us remember when there was data in DHF and what did you get. Well, you got what Ernie got. Your neighbor had this kind of a machine, so you got that. That is why we bought our VHS versus a beta. So, you are going to be able to pull people in but it is not an easy process.

MR. KAY: One more thing, I just sort of thought of this actually is part of the way we are going to -- that will help to spread some of the information to different populations is to find people in those communities, who are respected by that community. You can't have -- in some neighborhood, some communities, the government is not a respected source of information. So, you can't have a government person coming in and saying this is good for you or something and others that will be taken seriously. If you need to find whether it is community leaders, church leaders, pastors, rabbis, ministers, what have you, that are respected and that people, you know, listen to them on a regular basis, it can be even, you know, if you could get people to sign on, celebrities, musicians, athletes, that people look up to, but even, obviously, that is at a much more sort of a national level, but at a community level, though, if you can get the community leaders to buy into it and to understand it, they will get the message out much better and will know how to do it to their own community much better than anyone of us are going to be able to do and get them involved early, have them in on one of the focus groups when you are designing messages or if you are trying to, you know, design things, have them there.

Let them help develop it and say, look, this is not -- you know, my community is not going to buy this. Here is what you have got to do.

DR. HARDING: I am talking to the rock right away.

DR. LUMPKIN: We are almost done. I just have a couple of questions for the panel and then we are going to take a break.

The first question is just a follow-up on what you were just saying, but who is you should reach out to these groups?

MR. KAY: I guess it is a you -- the you, plural, all of us, everyone who is involved in the process, I think. The government obviously has a responsibility since the various acronyms here are -- that are involved are, you know, leading the charge in a sense and have put this vision statement together, so -- and have put these reports together. So, I think part of it would be that segment. Then there are everyone else who is involved in the medical community, the health community, health plans, you know, the academic institutions, the teaching hospitals, so forth, have a role to play in training the new -- you know, medical professionals to do this and also training the ones who are currently out there and then, I think, some falls on the business community, on the consumer groups, as well to get messages out there and to work with everyone to help disseminate it. So, I think it is "you" plural.

DR. LUMPKIN: So, since our focus on making recommendations is what the Federal Government should do in bringing about the -- their role should be as a facilitator and a convener.

MR. KAY: Yes, absolutely.

DR. LUMPKIN: I have a question for Kathryn Wilber and this has to do with, again, similar to the questions we have been asking. It is clear that if we are going to have a technological transformation of the delivery of health care, that there is going to be some capital involved. When you look at the situation -- and I can't remember whether it was Dr. Lorenzi who said it or someone else in one of the other documents we just got this morning, but that part of the problem is that individual clinicians aren't in the position to make these chances. It is very difficult for them. It is very costly.

How does your organization see this transformation occurring? Do you believe that the Federal Government should pony up the capital to make this transformation, the health plan should make this transformation or the associated group plans should make -- develop the capital to implement these kinds of systems that are roughly described when we talk about the provider health dimension?

MS. WILBER: Well, I can't give you an official response to that in the sense that --

DR. LUMPKIN: We have got that disclaimer. Now, what is your opinion?

MS. WILBER: What I can tell you, though, is that it is certainly an issue that is on the minds of health plans. This, of course, isn't a new -- it is not new to this issue of technology. It simply comes up when you talk about, for example, who pays for clinical trials and research and those kinds of things.

If you spend time thinking about it, you realize that everyone pays really at some level or how do you get to that point where it is shared. For example, administrative simplification transaction standards, I am hearing from plans we are very concerned about where physicians are in terms of their readiness and preparedness, involved in the transmission of these standard transactions as well, although plans have to. Doctors don't have to. They can continue to use paper.

But one of the concerns is how -- who is going to do the necessary outreach and education and then who pays for that. In a world of mostly rising medical costs, employers are getting concerned. They pay a good bit of the bill, as you know. We have to think about that and there isn't any clear answer that I can give you to that question, but it is definitely something that we did flag in our statement.

DR. LUMPKIN: Let me take that one step further in refinement. What we believe is our role in pushing forward this vision is that the first step in any sort of systems changes, people actually have to believe that there is something out there to go towards.

Arthur C. Clarke said that any technology when it is sufficiently evolved will appear to be magic and, you know, none of us know all the ways that our cars work. It is almost like magic to us. Our computer systems aren't quite that sophisticated yet, but we are trying to create that vision of part of making that kind of transformation and people have to believe that it is possible and then they have to believe that there is a benefit in it for business that is defined as return on investment.

Where should those studies of return on investment be done? Is that something that government should do? Is that something that consulting firms or private ventures should do? Where do you see that happening? Because, obviously, that will make a big impact on health plans and other large organizations deciding or not deciding to invest in new technology.

MS. WILBER: The quality of that sort of analyses, I think, is going to be important and the credibility of that kind of analysis in terms of evaluating that benefit. That is a very good point. So, I suppose, personally, I would lean toward some sort of academic research-based/government, highly regarded, you know, entities who are going to catch the attention of those who are trying to make those kinds of decisions because in a way just like there is a whole lot out on the web for consumers, there is a whole lot out there now and I am speaking very specifically to the administrators and publications. That is where I am spending a good bit of my time.

Now, this enormous number of consultants and vendors and others out there, producing all kinds of paper around this set of regulations and that is just one small part of the world that you are describing or that you are envisioning. So, I think we really have something to learn here. I know I have to read it very carefully and with some degree of skepticism because of the self interest that is involved.

DR. LUMPKIN: I would like to thank the panel. We are going to take a ten minute break. Just before we break, I did want to remind everyone that we do have a web site and that, of course, comments are solicited from the general public, as well as people who are here. The web site is a good way to send those in for those who are electronically enabled in communicating with us.

So, we will be back -- by my watch it would be 11:35.

[Brief recess.]

DR. LUMPKIN: Welcome the next group of speakers. As you know, we are fairly nice. The only exception we have are to people from North Dakota. We tend not to be very friendly to them.

DR. KNUDSON-BURESH: That is very much appreciated.


DR. KNUDSON-BURESH: There are only 650,000 of them left.

DR. LUMPKIN: So, it is easy. If you are going to pick on somebody, you might as well pick on folks from North Dakota, right? You wouldn't happen to be from North Dakota, would you?



DR. LUMPKIN: I knew that.

So, we will start off with Alana. Welcome.

DR. KNUDSON-BURESH: Thank you. Good morning, everybody. My name is Alana Knudson-Buresh. I am the senior director for the public health information and infrastructure policy side of ASTHO. That group is fondly known as PHIIP. Dr. Lumpkin used to be chair of that committee. S, it is nice to have full circle here with representation.

For those of you who may not know, ASTHO is comprised of health officers, the senior health officers in each of the 57 states and territories. So, today my comments are going to reflect their perspectives on the issues primarily reiterated in the vision report.

I am going to talk about the following areas: privacy and confidentiality, workforce development, geographical issues, access to data in the private sector. First of all, in privacy and confidentiality, clearly a high priority issue for ASHTO members, regarding health data, is privacy and confidentiality. I have attached a copy of ASHTO's privacy and confidentiality of public health and individual health policy for your review. Included are some of these areas; secured storage and disclosure, individual consent, publicly accountable processes for establishing and maintaining -- than those offered by federal law.

These principles harmonize with the privacy and confidentiality issues identified in both interim reports. ASTHO concurs, it is imperative that we have strong national and state legislation that implements their information practices and establishes strong punishments for abuses. Public trust is fragile. We cannot jeopardize this trust.

Therefore, it is critical that privacy and confidentiality issues continue to play a pivotal role in the evolution of any health data.

The next area I will touch upon is in the area of workforce development. ASHTO supports the continued enhancement of the capacities of the public health workforce to better identify public health threats and opportunities. During the past few years, the field of public health informatics has come to the forefront as a foundational piece for the public health workforce. ASHTO encourages the ongoing development of academic and continuing education programs in informatics geared to provide this much needed training to the workforce.

In addition, there may be some untapped resources or opportunities, such as innovative partnerships with the private sector that would lead to new ways of looking at old problems. For example, what could the public health workforce learn when working with entity, such as Sandia Labs in New Mexico, that has specialized training in data modeling and data mining.

It is essential that incentives for new partnerships, which build bridges to non-traditional health research data experts, be supported.

The next area I will touch upon is in the area of geographical issues. As public health is challenged to do more with less, it is critical that precious resources are targeted to those with the greatest health disparities. Many of the data sets that research currently used in assessing the health of state populations are not conducive to examining subpopulations.

The Community Health Status Indicators Project, sponsored by the Health Resources and Services Administration, is an excellent first step in assisting state and local health departments in assessing the health of their populations. By providing comparisons with other like geographical areas and with Health People 2010 objectives, a wide array of data users are able to assess the health status of counties.

Yet, there remains a need to provide greater specificity of the data in numerous geographical areas. Many state health departments lack the statistical expertise to develop the methodologies needed to conduct sophisticated spatial analyses. NCVHS may want to consider how to assist states in redefining geographic areas that would allow for more precise analyses of these subpopulations.

Access to data: An underlying premise of both the interim reports is the intent to provide more usable health information to a wide array of users. ASTHO commends your efforts in recognizing that the use of health data extends beyond public health and medical care. A challenge for all of us is how to use the data in a way that creates value. People will use health data if they see how it benefits them and improves the health of their communities.

However, many vulnerable populations may not have access to health data; therefore, the definition of health disparities may need to be expanded to include lack of access to health data. As the vision for health data evolves, ASTHO encourages you to consider ways to increase access to health data to all populations.

Links to the private sector: It cannot be emphasized enough that the public sector must work in concert with the private sector in the health care data arena. Public health relies on many private sources for data, such as immunization registries and hospital discharge data. Data standardization enhances the comparability of data and allows the public sector to better communicate with its private sector counterparts.

ASTHO promotes the development of data standards and is represented at the various standard data organizations. Clearly, data standards serve as a bridge between private and public health data. We commend you for inviting the private sector to the table to be active participants in this visioning process.

In summary, I would like to thank you for inviting ASTHO to share its comments and if there are any questions that you have, I would be more than pleased to answer them.

Thank you.

DR. LUMPKIN: Thank you.

Anjum Hajat.

MS. HAJAT: Hi. My name is Anjum Hajat. Very good with the pronunciation. Nobody ever gets it right.

I am from NACCHO, which is, as many of you know, the National Association of County and City Health Officials. We represent or attempt to represent local public health in the nation. Of course, it is a very difficult task considering the tremendous diversity.

Sorry I didn't have any real formal handouts or anything, but I can definitely provide that if you all are interested or need that. I just was sort of approaching this a little more informally.

So, I wanted to start off with a few points of emphasis and agreement that we found to really ring true in the eyes of local public health that we found in these reports. First, clearly, the issue of smaller geographic levels of data is -- or clearly it is very important for local health departments. They find it very challenging to do effective community assessment and program evaluations without sufficient data that they are sort of always in need of.

Subpopulation data, again, very important for locals, as they see and work with these populations on a daily basis and sometimes a bit frustrating not to have the data to back up some of the things that they are seeing and thinking. Generally, data at the county level works for most health departments. Of course, some counties prefer subcounty data. Many New England health departments do things on township level, city levels. So, finding a unit of analysis, I think, that works is a little bit of a challenge, but something that we can do just by sort of collaborating, too, with locals and seeking what is important for them.

The information technology gulf that was discussed in the vision paper is very clearly a problem in local health departments. We have everything from the very sophisticated urban departments with great information technology systems and well-trained people to manage them and then we have these rural counties that have maybe one computer. Nobody knows how to turn it on, you know. So, this is something that we really need to focus on and the Health Alert Network money is definitely helping us to reach the goal of bringing local health departments to the table and providing them with necessary information technology infrastructure, but that needs to, I think, keep up at the funding levels and cannot be sort of stressed how important that really is.

On those issues of privacy and confidentiality are clearly very important for this vision, but I think it is something that might need to be reinforced, some of the pivotal issues need to be reinforced at the local levels. Sometimes something that I don't think they are always thinking about or primarily concerned with because there is not so much of these issues of ownership, so you don't know that it is at the local level.

In terms of an important trend that is going on, I think that some of this data we need to sort of start monitoring is this whole issue of, you know, historically local health departments have provided direct services and clinical care. However, these days with the advent of managed care and the increasing cost of health care, they are really moving away from the provision of clinical services to more of an assurance role in providing more population-based services.

I think it is important for us to understand how this trend is going to impact the health of our communities. I am not sure we have the data right now to really fully assess that or understand it and it is something that I think we need to sort of keep in mind as to how these larger trends will affect the communities' health.

So, various things that we were thinking about in terms of concrete steps we can take to sort of enrich the vision, obviously, standards are essential. The NEDSS initiative, the National Electronic Disease Surveillance System, is one that I think is going to be very telling in the future as a good example of how a state can sort of meet their own needs but yet the requirements and demands for standardization are just essential in order for the project to be effective and to actually be implementable.

So, I think there will be definitely lessons to learn from this initiative in regards to standardization, but, importantly, often times we see that federal level standards or state level standards are created and then not necessarily communicated very effectively or efficiently to locals. So, this is an area where I think we can easily remedy that situation.

For example, this has been occurring a little bit with the HIPAA standards. Locals are -- they know that it is important. They know it is going to affect them. They are not sure how. I think they have been a little bit confused about what they should be doing to be more active. I think one of the problems clearly is they haven't really been involved, which is definitely something they need to be a little more proactive to get there at the table.

Another thing that we were thinking about in terms of -- that is important for the vision is a better marketing of public health and within that, highlighting the importance of health statistics. This is something that NACCHO is currently actually involved with. There is a collaboration of organizations that is involved with sort of marketing public health in an effective way.

This is something I think they can really bring a broad group of interested parties together on some of these really important issues. In terms of federal support for local and state initiatives, I think both technical assistance and continued funding would be very beneficial as I talked about the training of the workforce, not only in the information technology realm but in other areas as well.

Another big problem we have at the local level are offering incentives for skilled workforce members to stay in rural and underserved areas. You know, they will come for a year or two and then they will leave because there is just no incentive really for them to stay there. So, this is maybe something we could work together with our federal partners to improve.

Then, lastly, I just think a lot of it will hinge on efficient and effective collaboration and communication with the federal states and local partners. That is something that we need to start urging local members to start thinking about, the bigger picture in terms of health statistics in this vision. I think it is something they will be very interested in participating in. It is just a matter of sort of getting them to begin the process of participation.

But those were all in terms of the comments that I had and we did appreciate really having this opportunity to present our remarks to you all. Thanks.

DR. LUMPKIN: Thank you.

We have now taken on North Carolina -- I mean, North Dakota. We will try to take on North Carolina. Delton has moved on. We can't do that anymore.

It is good to see you and I understand you are in a new job because I read ahead in your first paragraph. Welcome.

DR. ATKINSON: Thank you. Let me express my appreciation for this opportunity to speak to the National Committee. This is, indeed, somewhat strange for me in the sense that I am the new executive director of the National Association of Public Health Statistics and Information Systems, but formerly been the division director of the Division of Information Technology at the National Center for Health Statistics.

I use this word "new" very literally. This is my third day on the job.


It is about enough time to be able to figure out two things. One is how to get into the office without causing the alarm to go off. The security guards are very happy about that fact. The other one is to know exactly where the bathroom is.

DR. LUMPKIN: Now, we won't let you be that humble, those of us who know you.


Now, despite all of that, I would like to provide some comments to you today that hopefully reflects some sentiments of the association. At your July meeting in Chicago, Al Zangri, who is president of the association, did speak to you about what the association does and some of its thoughts about the interim report on the health statistics vision for the 21st Century, as well as the health information infrastructure.

I won't repeat those comments that he provided, but rather to focus my comments on once we have this vision, once we agree to it, how shall we go about implementing it, what should be our next steps, what should be some of those considerations that we should look at.

Now, let me preface my comments with a premise of mine and that is when you look at any successful organization, it has to have an agreed-upon vision, one that every component understands where it is going and they also agree with it. To me, that is no different when you look at our health statistics system and as well as the health information infrastructure.

We have to have some sense of nationally where is it that we are going with this. Now, the 21st Century health statistics system and report, as well as the report on the health information infrastructure, both open with a very common theme that seems to prevail. That is health information in the future must aid decision-making. As you have heard today, we have talked about individual decision-making. We have talked about decision-making from the standpoint of programs. We have talked about decision-making from the standpoint of organizations, but the key is that health information must aid decision-making. Yet, if you look at our shallow approaches to data collection, analysis and dissemination, having a sound, reliable, relevant information for decision-making is difficult because we don't really plan our data systems many times in that way to be comprehensive.

Changing our data culture to one envisioned in the 21st Century vision will require what I believe is broad collaboration and partnership at the federal, state and local levels, as well as between both the public and the private sectors. In fact, it was refreshing to see this recognition as one of the ten principles in the vision statement that you propose. This is something that NAPHSIS wholeheartedly believes and supports and something that was stated to this committee at the Chicago meeting.

Now, how do we translate this vision into reality? Where do we go from here? We can easily talk about partnership and collaboration, but making it happen is another issue. In operationalizing this vision, we suggest that there be a collaborative committee or workgroup or whatever one wants to call it, that is charged with developing recommendations to achieve the vision of the 21st Century health statistics system, as well as the health information infrastructure.

This committee could be comprised of federal, state and local agencies and associations, such as ASTHO and CSTE and AMCHP and NAACHO and NAPHSIS and probably others. Now, while I can't speak on behalf of the other organizations, I would say that we -- NAPHSIS is strongly in favor of such a partnership and is willing to be a very active participant in that process.

Now, such a collaborative group would at a minimum need to address at least five distinct but very crucial areas and I say "at least" because there are probably others that will come up. The first of these is building the infrastructure capacity to meet the 21st Century vision, especially at the state and local level. For this vision to be meaningful, data must be available at the lowest possible geopolitical levels and saying that data is local is very, very true in our nation because that is where services are being delivered.

The ability of states and localities to have the information that they need for decision-making is paramount and some type of structure will be necessary. What they are, what they do, how well they are funded are really issues that we need to wrestle with in terms of the future.

Now, one such infrastructure entity that i want to just kind of bring up as an example, that probably necessitates a closer look when we are talking about this implementation is our state centers for health statistics. Now, as you look across this nation, while not all of them are very active, while not all of them are effective in all of the states across the nation.

The new vision really presents some opportunity for us to maybe reinvigorate the state center concept, not as a holder and owner of our data, but in a sense is a true virtual center,w here the goal is much like the vision, is to insure that health information for decision-making is available at our state and local levels.

Now, note that I used the word "health information" rather than "health statistics" center. A virtual center would vary from one state to the next, based on the states' needs and the political dynamics of that state. A center could house some, most, all or none of the health data depending on that state's culture and decision-making, how to chooses to do it.

Further, it could be a single agency or it could be one distributed throughout the state health department, but linked operationally through a central coordinating data body, who is there to set data standards and policies that are really guiding the statistical activities that are occurring within that state.

What characterize these centers would be their catalytic function of assuring that the information is collected, linked if necessary, analyzed and disseminated and I am going to talk a little bit more about this whole issue of dissemination, to meet the true decision-making needs at the state and local level.

Now, the second of these five themes that I think this coordinating group must deal with is enhancing the workforce capacity to collect process and disseminate health information for decision-making. Specifically, how do we train, how do we motivate, how do we help our statistical workforce to be able to think in these terms, to be able to produce information in ways in which our populace can understand it?

I think the other panel talked a great deal about that particular issue of how we tailor our information such that the average consumer -- and they are different consumers out there, but how do we train our statistical workforce to deliver information in that manner?

The third is prioritization of data needs and data sets. It is extremely difficult in this day and time to try to capture all data to measure all aspects of health because we really don't have the budget to be able to make that happen. What are the ways in which we can better use the data and master the collection and the transformation of these data into information needs to drive our future actions?

What are the data that we truly need and how do we prioritize these? What data should we stop collecting because its utility has long disappeared or we have completely forgotten why we started collecting it in the first place?

These are some of the things that this coordinating group and working group needs to wrestle with.

The fourth -- and it has been talked about before -- is data standards, including the collection, transmission and the dissemination of our health information. Our ability to compare and contrast data across multiple areas, data sets is heavily dependent on being comparability of definitions, of formats, of terms and so forth.

We have a forum that already exists, which is dealing with some of the standards issues in the X12 for administrative data, the HL7 for non-administrative data and, obviously, we recommend that we avoid the tendency of trying to create our own standards, but rather to try to work within the framework of that process.

In fact, we believe that public health should and must be a stronger voice in the participation in these standard-setting bodies.

Fifth is funding partnership and notice I used the word not just "funding," but "funding partnership." States and localities, as we look across the country, are already putting significant funding and other resources into health information activity. Federal help is needed and it will be needed in the future to enhance this particular process. But what specifically should be this funding partnership between federal and state and for what amounts, obviously, is an area of much further debate and discussions and what are the ways in which we can maximize that.

I was at a meeting the other day where we were talking about maybe in some situations we don't always distribute the small amount of monies that we have to individual states, but maybe use them in a collective way to take advantage of technology and use it collectively to help the overall good of our health statistics system in this nation.

Finally -- and I do want to kind of reiterate what was talked about in the panel right before us -- is this issue of having a sound marketing strategy for our vision and for our operational plan. I truly believe that public health statistics is a well-kept secret. We have a tremendous amount and I would dare to say endless stories to tell about the health of our citizens.

We absolutely do not do a very good job of telling that story. How do we better educate the populace about what data are, indeed, available, how they may use it to make decisions in the future is a goal which we need to have a tremendous amount of discussion, strategizing and recommendations that come forward.

Now, in closing, I again would like to say that I am very much appreciative of this opportunity to just to talk a little bit about some of our thoughts and I want to reiterate the words of our president, Al Zangri, as well as mine, that we strongly support this visioning process and we are strongly willing to be active participants in what we think has to be the next step and that next step has to be a collaborative effort to help define the specific steps that we are going to take to try to put this vision into place.

I hope some of these comments will help in some of that thinking.

DR. LUMPKIN: Thank you.


DR. FRIEDMAN: I have a question particularly directed towards Alana and my old friend and colleague, Delton, which is, you know, this morning in the earlier panels, we heard a great deal about the need to bridge the digital divide among consumers, the need to essentially segment consumers into -- and be aware of the differences among them, about differing levels of technological literacy. Then, Delton, you were talking about the need for marketing strategy for health statistics.

And it seems to me that one of the consumer groups that is very small, but also very important are the state health offices themselves, who I would -- well, who I know are at differing levels of technological literacy and differing levels of interest in terms of the interest in health information, health statistics, et cetera, et cetera.

I am wondering if you have ideas about how we can bring them along -- them -- and I realize it is a very varied them -- and involve them -- get them to be more active participants in the process.

DR. KNUDSON-BURESH: Well, first, I would like to just comment that I think as people become more and more accountable -- you can go before your state legislature as a state health official. You have to demonstrate value and data is the foundation to be able to demonstrate that value. I know that we have through the Robert Wood Johnson Foundation, a program that we train state health officials on orientation and provide them with links to different kinds of resources and pretty much give them an overview of what things are available.

But I think what we also have to keep in mind is that state health officers turn over. The life span of a state health officer is about 24 months tops. So, these are not a group that we are going to have -- well, not tops, but this is our -- average is about 24. Luckily, some have longer tenure and that gives a lot more continuity but I think maybe the group that from a senior health official level, that might be better audiences or be supportive audiences would be our senior deputies because over time they are more continuous in their roles and they also often have more operationalization type duties.

So, I think extending information and helping to train that group is very helpful, but it is difficult because state health officers have so many different things on their radar screen, that to put data on the radar screen, you really have to make it relevant to what they do day to day.

DR. LUMPKIN: Yes. We wouldn't find state health officials involved with this level stuff anyway.

DR. KNUDSON-BURESH: Would you agree?

DR. ATKINSON: As to -- and to follow up with that, I think that from the standpoint of a health statistics community, especially at the state level, that one of the things that they have to do is understand what are the priorities of that state health officer and the deputy and to look at what is it that I can do as the health statistics person to provide the information that that state officer is needed.

An example: Let's say that the state health officer is going to be -- is very interested in asthma in children and has stated that as one of his priorities. Well, one of the things that as a health statistics official that I should be doing and going back to my staff and say we need to be doing some special research on asthma in children so that we are linking what some of the things that we are doing, some of the studies that we are doing to what that state health officer has expressed as his particular interest.

I think it goes both ways, the training, being able to work with both the deputy and the state health officer, but also clearly understanding what their priorities are and trying to see what are the ways in which we can produce the data and that may help or may assist that state health officer in trying to meet some of the goals that he has expressed.

DR. LUMPKIN: One of the questions I have for all three of you, because the issue has sort of come up, has to do with what Delton said, for this vision to be meaningful, data must be available at the lowest possible geopolitical level.

We have got a fair bit of experience in Illinois in providing data at the local level through a process that we call I-PLAN, Illinois Project for Local Assessment of Need. What we find is that when we print out reports at the local level, we get what is called euphemistically is a Star Report. It is called a Star Report because every time that there is data that is not significant, the cell sizes are too small or we don't have a denominator data because we are so far from the senso(?) year, we hate to make population estimates.

We put asterisks when the system prints out. So, in many jurisdictions, they try to print out data and unless it is very gross summaries, they are just going to get an asterisk, which is not going to be very useful.

So, to what extent -- and you can either answer today or maybe come back later, but to what extent do we need to set a research agenda so that if the goal -- and I believe that it is a very important goal of making data available at the local level, that we actually have the science whereby the information that the information that is derived from that through analysis is meaningful or useful and even available because it is not just enough to have the data.

We have got counties in Illinois with populations of 9,000 and talking about health statistics at the county level becomes a very difficult concept. So, the question is is to what extent do our -- do we need to have a research agenda be able to make this meaningful?

DR. ATKINSON: I think that we do need to have a very strong research agenda that is looking at small area of statistics and to me that is something that should be as applied to something like the National Center for Health Statistics, this should be work that has been done within some of our universities in terms of how we can be able to do that, but it is a critical, critical need that exists out there. And we don't know how to go beyond the asterisks and the stars as you mentioned, but, yet, that community is very interested in data.

Sometimes even in areas where you can produce county specific information, people are very interested in sub-counties. So, we have even had that as an issue to come up.

MS. HAJAT: We definitely concur with that. I think that it should be a priority in terms of creating or setting research agenda to better understand this kind of small area estimation. We came across this problem repeatedly. I want to mention the Community Health Standards Indicators Reports, which many of you may have seen. Those are the county level reports that we produced jointly with HRSA. And it is very frustrating for small counties again. My whole report is just asterisks. There was very little we could do about that.

I do need it needs to be a priority and something I think that Nature has advocated for quite some time.

DR. KNUDSON-BURESH: Just to note for states, there are some states that come up as asterisks, too. Coming from North Dakota, I can concur that it is really difficult to try and get data and get a report that is full of stars because you are trying to make decisions and if you are basing your decisions based on the data and they are all stars, you are back to ground zero.

I am just going to give you one anecdotal experience I had. When I worked for the state health office in North Dakota, I was asked to present data on the state and I presented that data and at the conclusion of my presentation, the chairperson of our health council looked at me and said, well, the data is fine, but I think we all need to make decisions based on our common sense.

Unfortunately, I think that is what tends to happen when we have reports that are full of asterisks. People just resort to using common sense. I think there are some scientific methodologies that could be developed to help us overcome some of those issues.

DR. LUMPKIN: On a related point, I think we have been talking mostly about health statistics, those that are generated by collecting data on health events within a community. We also generate health statistics through the process of surveys and going out to get the data. Again, this is a question that I think could be answered at a later time in more detail. If we were to make a recommendation that all surveys be done in such a way that the data would be meaningful at certain geopolitical jurisdictional levels, what would be the incremental cost to do that, again, looking at whether or not it would be available every year or every third year or something along those lines, whereby, for instance, the NHANES or any of these surveys, which are done on a national level, but could have some state oversampling on some sort of cycle so that they are actually a state specific data?

Do you have any thoughts about that? If you think that that is important, it would be useful for us to kind of have an idea of the ball park that we are talking about for that kind of changes.

DR. ATKINSON: That is an interesting question and I am trying to kind of sit here and think through it because I think they -- I think that some of the surveys, like NHANES and some of the others that we do at the national level, that we do need to increase the sample size to be able to do.

If we are going forward with a set of recommendations, the question becomes how much of that you do at the national level, of whether you try to provide a mechanism such that states are able to maybe take something where the bulk of the work is done and be able to adapt it for their situations, such that they can add monies to it to be able to do a more detailed, state specific survey.

I think when the sample -- California has come up with a health survey that they are doing and I think some other states are beginning to talk about that, but that is something where I think it will be a very interesting summit to have in terms of that particular relationship. I do think that the sample size of some of those surveys that are done at the National Center needs to be increased, but I think we also need to look at how do we facilitate some things happening at the state level as well.

So, I think you need both of those.

DR. LUMPKIN: Similar to the Behavioral Risk Factor Survey and approach. I think there is a Midwest state that does that at the county level.


MR. HUNTER: This is something we are always asked at the National Center for Health Statistics. I think that the typical answer to your question when talking about surveys like NHANES and the Health Interview Survey and others is you don't even want to know the -- the answer kind of comes into the range of irrelevant because it is so large you would have to -- you would have to increase the sample size of the HIS, you know, 20 or 30 times to get -- to take care of all of the asterisks.

So, I think we have probably tended not to answer that question very directly. I think when talking in more vision terms, we answer the question that way because it just has not been realistic to get increases of a hundred or $200 million in programs that are only now a hundred million dollars or so.

I think, you know, in carrying the next level of the vision discussion, it may be worth looking at examples where California has a Health Interview Survey that is similar to the National Health Interview Survey. It probably costs as much as the National Health Interview Survey just for California because it needs -- it has excruciating levels of detail at the county level and there is a real sort of menu of choices one has to make about sample size and whether a telephone is adequate for the types of things one wants to know and maybe in most cases, there probably is, whether modeling or estimation is appropriate.

I think we probably haven't played that through as far as we could because almost any of those solutions have been so much more -- has been thought to be realistic, but those have been in very practical discussions, not in the context of the vision.

The California thing -- I think Wisconsin has had a Health Interview Survey. There are examples out there that have been adequate. Massachusetts certainly has had experience with this. There are states that have done things that were quite sufficient for the state's purpose that give us some hints on what might be -- something like HANES is so expensive per person that you really wouldn't -- it probably wouldn't be appropriate or necessary to do it in the full level of detail, but there are sort of intermediate models of HANES that one can think about doing --

DR. ATKINSON: And I think the other thing that this sort of brings out is that if we can figure out a way in which to facilitate the best practices that are happening and especially with respect to small area statistics that are happening across this nation and to be able to spread that sort of like as the previous group was talking about in terms of why you do technology.

If there are some best practices, which are cost efficient and that has shown to be able to produce the results that counties and localities need, if we can figure out a way to facilitate some of that, I think would be something worth talking about and recommending in this process.

DR. KNUDSON-BURESH: I was just going to add from the states' perspective, I think, too, we really need to consider it is very cost prohibitive for states to do things and unfortunately sometimes states decide to embark on their own and then they try and compare their findings with a national survey and that really causes a lot of internal problems because you have to try and reconcile why you came up with different findings.

So, I think maybe part of our charge -- and I am saying "our" as a collective -- is that we need to better educate some of our people, our policy makers, as well as some of the people who work in health data to illustrate what the differences are in data, you know, the different kinds of interviews.

I will give you one example and that is with the CPS data. If any of you have ever used that data, looking at health insurance coverage, if you are looking at a very small state, the variability is unbelievable. It is very difficult to have to explain that maybe because the sample size was too small. You know, it is a national survey and people are trying to use it at a state level to make comparisons and, likewise, you know, you just take that down a step when you are trying to use a state survey and bring it to the county level.

I would support that states would like the flexibility to be able to make some decisions about having county level data available, at least an option in the states only to invest or maybe partner with the federal partners to invest in that HIPAA survey, I think it would be very, very useful.

DR. LUMPKIN: Other questions?

[There was no response.]

I would like to thank the panelists for joining us this morning, into the afternoon.

At this point, we are going to take a lunch break. We will be back at 1:30 Eastern Standard Time.

[Whereupon, at 12:30 p.m., the meeting was recessed, to reconvene at 1:38 p.m., the same afternoon, Thursday, January 11, 2001.]

A F T E R N O O N S E S S I O N [1:38 p.m.]

DR. LUMPKIN: Welcome. I hope everyone here had an opportunity to get some lunch.

Agenda Item: Panel 3: Stakeholders for Health Information

DR. BURKE: I see that my title is Pew Environmental Health Commission. I just want to set the record straight. That funding ended December 31st. I am an associate professor at Johns Hopkins School of Public Health. So, don't ask me for money. I don't work for Pew and I never did, although it has been very interesting working with the support of the Pew Charitable Trust. You really pay some attention to the public health infrastructure.

I am here today to -- well, from a number of different perspectives. One as a researcher in environmental health, who has been very involved with the practice community, particularly on the state and local level, trying to address a lot of the national environmental health issues.

I also come to you as a former deputy commissioner of health from the State of New Jersey, where you can't practice public health without being very, very immersed in environmental health issues and concerns.

One that comes to you as one of the principal investigators for the Pew Environmental Health Commission, which is just -- Dr. Lumpkin was a member of that commission and just now winding up their business and has prepared a transition report to the, as you will see, this new administration -- there was some uncertainty there for awhile, but it is to the new administration -- we knew they were going to have a new administration.

The commission took a hard look at the way this nation evaluates, really performs the core functions of public health as it is related to environmental health and a very, very big part of this is basic information about incidents and trends in disease. The part of the project that I was involved in really was renamed by the commission to be the "Tracking Project."

Those of us in public health know that surveillance is -- public health surveillance is absolutely essential as a core function of public health and in environmental health, we lack even the basic tools to begin to understand the impacts of environmental exposures on public health.

I say this as someone who has spent ten years as a regulator in the environmental agency in New Jersey, someone who worked as a deputy commissioner of health and someone who has been out for ten years and researching better ways to understand the links between environmental health, the environment and health.

I brought some handouts today and had a slide show prepared and I don't need to bring you through the whole thing. That is really background information. But I would like to outline the process that we went through and underscore -- before I get to the end, I will give you one conclusion.

We in public health are very disconnected from the practice of environmental protection in this country and it really shows. Because of that, on environmental protection policies do not adequately consider public health endpoints and we don't know if we are doing the right thing because we don't have the public health metrics that are essential to tracking progress and demonstrating effective prevention strategies.

So, I would be glad to discuss specifics on that, but let me tell you a little bit about the process that we have been through. The process is very much shaped by my experience as a public health official and I have to tell you I chair the advisory board to the director of the Center for Environmental Health and as chair of that, I serve on the Directors Advisory Board at CDC. Environmental health is very often a stepchild of the broader public health agencies in this country.

That is no surprise, with the rise of the Environmental Protection Agency and the shift toward a regulatory command and control approach. We on the federal level have been detached from that process. However, on the state and local level, the practice of environmental health is probably the most vexing, underfunded, demanding aspect of the day-to-day operations of the county health officials and in many regards a state health official, particularly in industrialized states, where there are major issues emerging and where we have to balance sometimes the tremendous costs and demands of implementing environmental protection with a sample of health practice.

So, the commission set about its work to try and understand what is out there, particularly regarding environmental health tracking. What do we know about sources of exposure, about actual exposure levels and about health endpoints, disease endpoints that we should be concerned about in environmental health? Working with all the states through the Council of State and Territorial Epidemiologists, all of the relevant agencies, we spent a good part of two years trying to understand our national infrastructure and a picture emerged that really shows that on the public health side of things, we really haven't through the infrastructure plugged in the necessary information that public health professionals need for environmental health.

I will give you an example. I, for a number of years, was very involved with the city of Philadelphia and concerns in the city about the impact of the environment on the health of a broad part of south and southwest Philadelphia. If you have driven up 95 into Philadelphia Airport and see the major refinery complex there, not unlike the refinery complexes that we have in many other places in the world, including Texas and New Jersey, public health officials and the citizens were very concerned that there were high levels of exposure there that were reflected in high mortality rates and high illness rates that they knew from the very cursory surveillance that they did, which was really limited to total mortality in these areas. They asked Hopkins to come up and help sot through what we could learn about exposure, about connections to health, so that they could better craft a prevention strategy. Well, the amount of information that we have on appropriate health endpoints and what were the citizens concerned about -- obviously, we have been obsessed with the cancer environment link in this country for about 20 years and that is important. We now have a pretty good national program led by SEER, the expansion of SEER and the funding of state cancer registries to get a handle on cancer.

But cancer is a very blunt instrument in terms of understanding the impact of the environment on health, as is total mortality. So, you go to a community like that and you sit down with the health professionals and you realize the limited tools in the arsenal to understand the public health impacts.

This is just one specific case example where people were concerned about asthma and people were concerned about neurological endpoints, reproductive endpoints, endocrine endpoints that clearly there is information emerging from toxicology in other research fields that we support through NIH. We haven't made the translation to environmental health.

We have -- we are light years ahead in understanding emissions into the environment. So, through national environmental strategies, such as the National Right to Know components of the Superfund legislation, communities now have access to information on initiatives, but the public health side of that falls down. The public health side of understanding exposure falls down.

So, as we began this systematic review, we found throughout the country, state epidemiologists are stymied in addressing issues, whether it be from the DOE sites and concerns about contamination there, military sites, industrial sites or just plain everyday early environmental health issues of density and housing. There are many, many more examples.

I served on the National Academy Mercury Panel to try and look at risks of mercury exposure to the population, neurodevelopmental effects, and found we know virtually nothing about the exposure to the highest risk groups in this country. So, I come to you today to talk about making a connection and as you go forward in thinking about the information infrastructure, what needs to be there, I would hope that the partnership with the other agencies in occupational health, environmental health is there, that we build upon the fledgling initiatives of NHANES, the National Exposure Report Card and at CDC at NCEH, to understand population exposures from environmental exposures.

We build this into the system and we recognize the need really to not just have a federal barometer for certain key indicators of health, but to really better serve the core functions of public health out there where public health is practiced at the state level, at the local level, to give our state epidemiologists the tools in environmental health that we need.

What do we mean by this? Well, transmission report kind of outlines our tracking of chronic diseases on the state and local level as dismal. There is no support there. It is not that the desire hasn't been there -- I speak from personal experience -- to do that, but the connections with the health care community -- the connections to tap in the data resources that we have just aren't there.

Nor are the intellectual guidance, the technical guidance, I think, that state officials, local officials need to understand what the appropriate endpoints might be, what kind of technology can be used. So, as we all observe the growth of the Internet and the tremendous access to information about products and things like that, you get a glimpse of the possibilities, but we haven't tapped the beginnings of those possibilities in environmental health.

So, that is what the background information is about. We have, obviously, put together a strategy to do that. We feel there are very important health endpoints that we can begin to tap into through pilot programs, to build a national network of the environmental health tracking. There is very valuable partnerships with other agencies that we can develop and we can really begin to advance the way that we practice environmental health.

To conclude, I just want to mention kind of on a political note that this is a very interesting time, obviously, to try and understand what is happening in environmental health. Just on a personal note, when I was deputy commissioner of health in New Jersey, Christy Whitman was a member of the Board of Public Utilities that no one ever knew and now everyone is calling me up to see if I knew her and what she might think of environmental protection.

Obviously, there are changes going on right now and in this whole process that I think we are going to live through in the next four years, at least of devolution of the role of the states, of the role of locals in regulatory change, to be done well and to consider public health is going to need the information resources, like this, so that we have educated decision-making.

There are a number of huge regulatory decisions in environmental health that will really depend upon building that infrastructure. So, whether it be an ongoing and emerging issue, like West Nile spraying that we see on the East Coast where there is absolutely no regard for the impacts of the spraying, but pretty good track of the infection, we need to broaden our horizons.

By doing that, you have to bring in the locals. You have got to include the states and you have to support what they are doing there and make sure that as you are the architects of this system, that there is opportunities for those connections.

That is all I will say.

DR. LUMPKIN: Thank you.

Richard Nugent.

DR. NUGENT: I want to thank Dr. Lumpkin and Dr. Friedman for the opportunity to mention the MCH concerns and interest in this area and to your committees for the extensive work that you are doing in putting this huge project together, these several projects.

I would like to include in my remarks four areas; first, to mention the stakeholders that I represent and to describe how they perceive their needs for data and information. Then, to describe the commitments that already exist within this group towards developing your data and information resources.

And, finally, to give you a little comment on the State of Arkansas, not because it is all that unusual, but rather because it is fairly usual, as kind of an example of what is happening in many other states on the ground. The groups of stakeholders that one could point to in the MCH world, first of all, the Association of Maternal and Child Health Programs, who asked me to come and present today, which as you all know is a Washington-based advocacy group who are -- they improve the health of women and children and adolescents and families. That is their new language.

It follows the Title V legislation of the Social Security Act, which is to assure the health of all mothers and children in the country. This group brings together not only national leaders in maternal and child health, but the whole state and a lot of local infrastructure in terms of agency efforts to deal with the maternal and child health area, in addition, academic involvements, teachers and academic programs around the country.

The AMCHP works very closely with our federal partners, most closely with the Maternal and Child Health Bureau in DHHS and HRSA. The MCH Bureau supports AMCHP to some degree in terms of it developing its national meetings and so forth and they meet regularly. Then other federal partners, like the folks at CDC, who have an interest in mothers and children. There are wide varieties of activities that are pursued together.

Next, public health services and state and local health departments and that is my role. I am the Title V medical director in Arkansas and have recently been reassigned as the physician for a region. The health department is decentralizing from the state level to the regional level. So, we have kicked into place five new planning processes, which are health wide and community oriented.

Finally, a wide variety of advocacy groups with specific interests, such as March of Dimes, Birth Defects, Family Voices, a wide variety of groups that you relate to at AMCHP in a number of ways.

I would like to talk first of all about how these groups proceed in a general way, their needs for data and data use. First of all, we really need to raise our sites to include all of the relevant issues that have to do with mothers and children and by viewing all of the data sources that we have and all the information that we have, it tends to keep our view broad.

We want to characterize and quantify health problems that relate to mothers and children. We want to involve individuals, institutions and governments at all levels in the process of assisting and improving the health of mothers and children.

We want to find successful solutions to their health problems and they are all in the context of conserving limited health care resources. To be a little more specific about the needs and maybe this is more in the perspective of the state MCH health person, the Government Performance and Results Act, GPRA, requires all MCH funded programs to be marshalling their data and measuring health status among mothers and children and measuring their progress towards goals and objectives in that area.

Of course, any organized planning effort begins with that assessment of the available data. The data itself, in terms of our needs, it must be timely and two years ago isn't good enough. Accuracy goes without saying. but more and more, it needs to be disaggregated by small geographic areas and by subpopulations so that we can understand better the needs of our more specific groups within maternal and child health.

I am sure a lot of these comments are probably appropriate to many other aspects of health care information. We need to draw our data from a variety of sources, vital records, provider management information systems, population surveys, consumer surveys and data from bill-paying mechanisms. It takes all of these to put together a data system that you can use to clearly assess programmatic interventions and health systems interventions at the state or the community level.

You must marshal the data for -- and present it to support community diagnosis and needs assessment processes, consensus building and priorities, developing measurable objectives and measuring progress. The data must be provided in the context of technical information about the data itself. What was the source from which the data came? What was the purpose for the data set that put it in place to begin with and how does that impact on your ability to use that data in your analysis?

What is the linking process of putting one of these data sets together? What are the implications in the way you link or the use of the data? What analytical issues arise and are pertinent in any particular area; for example, perinatal epidemiology or population epidemiology, infectious disease? There are many different particulars of analysis that act on your ability to draw inferences from.

They will be made available to do broad things, like needs assessments and surveillance and follow-up. But they need to be approachable for somebody with a specific question and a specific problem that he can dive into that data and bring back information, which is relevant to the particular need.

I would like to talk a little now about the commitments of the MCH works in developing and using the data resources that it has. I will mention primarily two. The NCH Bureau is using Title V funding through what it calls its SPRANS(?) Project, Special Project of Regional and National Significance, more and more to provide resources to states to develop their own building use capacities. That has been a tremendous help to us.

In addition, there are training grants for professional training, which emphasizes the importance of data use and then if we look to another of our sister agencies, the communicable disease centers in Atlanta, there has been a great deal of active participation from CDC in the development of MCH senior epidemiologists in the provision and support of national meetings where people with these skills and interests from the states to come and meet and develop their professional capabilities.

Then coming to Arkansas, just an example of how a commitment is growing to the use of data broadly in health care planning. Our state has initiated something that it calls home town health improvement. This is a health-wide community-based organization and planning process, which will eventually be rolled out to every county in the state, where we get the stakeholders together and present them with a certain broad set of data, ask for their special interests, try to provide the data necessary to those planning and priority and getting communities to own the problems in their own systems and to take responsibility for the development of the health care systems.

Then in addition to that, the decentralization to the regional level is intended to bring decision-making about resources closer to the community level in terms of state organizations.

In order to do all this, one of the chief underlying issues and development is that a partnership and certainly the partnership is behind this tremendous effort that you are all involved in -- no one can do it by himself and so we are constantly looking for ways to partner with those people who have similar interests and resources to contribute to it.

So, I thank you again for the opportunity to present things and the MCH world certainly wishes you god speed in completing your processes.

DR. LUMPKIN: Thank you.


MR. BIRD: Good afternoon and thank you for this opportunity to offer the perspective of the American Public Health Association. The American Public Health Association is the largest association of public health workers in the world, 50,000 members, and we certainly are happy to be here with you this afternoon.

I want to just, first of all, thank you for the time and the effort you have put into this because I can appreciate the amount of work that something like this requires. In fact, you are doing such a good job, I think that you need to be recommended to handle the election reform processes and procedures that need to be implemented, given our most recent fiasco with the national presidential election.

I think you have done such a great job, that should be the next thing you should attempt.

DR. LUMPKIN: I think I would like to have a recount on that.

MR. BIRD: We will have to consult with the Supreme Court, I guess.

I want to offer -- I was going to mention in terms of a couple of points that we, in fact, have developed and then I am just going to summarize at closing a couple of significant points, I think, that need to be reiterated. Some of this was mentioned earlier this morning by the earlier panelists.

That is that the potential impact of the proposed national health information infrastructure in the field of public health is very significant. In fact, there is hardly any aspect of the public health infrastructure that would not be impacted. However, this is a highly desirable outcome since the field of public health has been too willing to accept the traditional approaches of the handling of data and as a result has failed to take advantage of the new technologies that have recently emerged.

There are many applications that would significantly improve the performance of public health systems and the professionals that staff them. Among those include the following: Improving the ability to identify disease patterns and trends on the national, state and local levels and thereby permitting public health systems to intervene and safeguard the involved populations, developing reliable systems for accurately assessing the health status of a community and effectively defining the factors that are responsible for maximizing this health status, enhancing the public health system's ability to assure that its programs and its resources are used in the most appropriate manner, permitting evaluation of public health programs and activities with a view towards improving them, providing a firm base of data for the development of effective health policy and legislation, assisting the processes of forming public and health professionals -- of informing the public and health professionals about major public health issues in the most effective known mechanisms for addressing them.

Improving communications between federal, state and local public health systems on common issues and concerns and becoming an essential part of the public health infrastructure in the event of a bioterrorist act or any other public health emergency, as well as providing data for conducting public health research. These and other potential public health applications could serve to literally revolutionize the provision of public health services. However, before we can endorse them with enthusiasm, there are a number of things that need to be demonstrated and I will go into them.

The NHII can be structured and coordinated so that it will deliver on its promises in the long term, that NHII would be so reliable that users can confidently expect it to deliver data when required and in the appropriate format and the appropriate level of confidential data collected in the NHII and be maintained at all times; that it also be user friendly for all legitimate users of its data and that the implementation will be conducted in such a way that it builds on emerging trends in the use of health-related data rather than requiring social and culture revolutions to assure its intended use and that it be evaluated on a regular basis to determine if it is meeting all of its intended objectives.

In closing, there will be a national advisory -- we recommend that there should be a national advisory board representative of all the major user groups that will guide its future course of development.

In addition to that, as I mentioned, in the earlier discussion it was noted that there appeared to be some difficulty in identifying those populations that were considered disparate and in that, in fact, that this effort not leave them further behind than they already are. In that regard, I think two significant populations that clearly need to be given serious consideration or rural populations and American Indian and Alaska Native and indigenous populations, as well as Native Hawaiians, not to mention many of the territories that the United States Government has domain over.

Also, I think it needs to be -- we need to look at the fact that in relation to earlier comments this morning, the private sector seems to have no problem in identifying particularly the -- in the areas of tobacco and alcohol marketing and promotion, those folks seem to have a pretty good handle in identifying who their customers are.

We, I think, need to also begin to have a better understanding, which ties back into being more culturally aware, more culturally sensitive to those populations. If, in fact, business can identify who their customer is out there in the world, I think we also have a responsibility to know our customers and to know to approach it with a different frame of mind because those populations, in fact, are our customers and we have an obligation and a responsibility to see that what we do is relevant and appropriate to them.

The other points I might mention are the need for a common language for the exchange of medical information. I think it is extremely important that we be all using the same language in order to better communicate and enhance the delivery of patient care to populations.

The other population I might mention in this -- I don't know how much consideration has been given to this -- is recognizing and acknowledging the role, although the populations are small, with the increasing throughout this country with American Indian and Alaska Native populations and their increasing role in assuming responsibility for health care to their populations and to their people. There comes into play the issue of tribal government and sovereignty and the need for state governments and other entities, federal, state entities to begin to recognize that and see tribal governments and tribal health programs and departments and somebody that we need to collaborate with, rather than look at them in unfortunately, I think, which is much the case in many places, as competition or in an antagonistic way.

Indian people in this country are citizens. Indian people do pay taxes. Anybody who wants to audit my taxes and see how much I have been paying, I would be happy to provide that to you all. But the fact of the matter is that it is a population that often times is not ignored in the provision of services and clearly more often than not, they are included when proposals go forth to the Federal Government. The population is included, but somehow that never -- more often than not, that usually does not translate into services for those communities and those populations.

Hence, we begin to see -- we see that the nature of this is disparity in those communities. If, in fact, we are going to turn that around as was mentioned by the previous speaker, we really need to begin to collaborate. We need to look at each other as partners and look at collaborative methods, rather than competition, if, in fact, we are really going to improve the health of all of the people of this country.

I might mention also that as you may or may not be aware of the American Public Health Association and the Department of Health and Human Services, just this last year launched a ten year initiative to address the issue and to move towards the elimination of disparities in this country and we look to you and to your support and we look to U.S. collaborators and partners in this effort to, in fact, address one of the more significant issues in this country that has very -- that is very important if, in fact, we are to continue to consider ourselves to be a democratic and civilized society.

I thank you for the time and let's look forward to a good year.

DR. LUMPKIN: Thank you.

Questions? I will start off with Mr. Nugent and the APHA.

Earlier today, you heard me ask this question. Who should pay for it and who should do it, in setting up the National Health Information Infrastructure? Is this the role for government or public/private partnerships or the private sector? How do you see us move forward with this implementation?

MR. BIRD: Well, the way I look at it is it is an investment in the well-being of all of the citizens of this country and in that sense, I think it a responsibility that I would hope that all parties would be supportive of. We are talking right now on a national level about the importance of a strong defense and that was part of the discussion in this last -- the election, most recent election, was having a strong defense. Well, my own personal thoughts on that are the fact that the real strength of this country, the real strength of the nation is the strength of the people and that if we don't invest in people and we don't invest in infrastructures that promote the health and well-being of our people, that, first and foremost, is the most significant thing that we can do as a nation to strengthen this country.

Of course, in terms of public health, I think that public health is the real basis of a healthy people and a healthy nation and a strong nation. Laura Garrett in her most recent book on global health, sites a number of instances in terms of what has happened in what was the Soviet Union in the demise of their public health infrastructure and the negative consequences that has had on that country in a number of areas.

I think there are lessons to be learned and I would hope that people would become -- I think it is our responsibility to make people aware of what is going on and the potential negative consequences of not investing in public health and not investing in the people in this country. All of us are stakeholders in this and, therefore, have the obligation and responsibility.

DR. LUMPKIN: The maternal and child health systems, particularly with WIC and other programs, have sort of led the way in developing integrated information systems related to service delivery, as well as being able to monitor. Do you see ways that we can take those kind of experiences, which have tended to be along the lines of take our system and use it, into a new environment that is web-enabled and e-health and all these other terms that have been coming into being and going out of being -- how do you see that role of delivery of MCH services being closely integrated into, you know, health care services, as well as involving technology within the nation?

DR. NUGENT: I think in terms of making -- using the data and making it available, again, in the context of Arkansas on information technology and information systems in the use of the lab is really becoming just an integral part of everything that the health department does. It is

-- every local health unit is on line now. We are now moving our databases from files into the web page so that each local -- each community can have access to its information. We are trying to do this in a way that is responsible and protects the confidentiality where that is necessary.

It deals with things like putting a number in the cell where your number is too small. But then along with making the data available through that system, trying to develop a capacity to train people in the community on how to delve into that data and learn what they want to learn is really a two-pronged -- the data systems and the Internet is not enough. There is just so much to do to build that process and to make it effective at the community level.

DR. BURKE: If I might just comment on who would pay for this and how do you make it happen. One thing that we did learn through the Pew work is that the resources at the state and local level for this are extremely limited. I implore you not to expect that in competition with any other programs, that this can happen without a strong federal guidance and strong partnerships with the users in the private sector. We don't have the resources out there in the public health infrastructure to make this happen from the bottom up. It needs some help from the top down.

DR. DEERING: I have a couple of follow-up questions. The first would be to Tom -- and I am sorry I haven't read the whole report. I have just read a couple of the summaries. Clearly, what you have outlined there is a wonderful small subset of the areas that we are looking at.

You learned that in the NHII concept what of the primary emphases is on the linkages between not only the public health, the community sector, but the clinical and personal sector. I am wondering whether you can tell me whether your report seems to be -- it is directed toward public health professionals. Is it exclusively directed to public health professionals?

Are there things in the report that would help us see your thinking about how the network that you have sketched would fit into, say, clinical linkages and might fit in also with public oriented information flows or have you just focused pretty tightly on the public health community?

DR. BURKE: That is a great question. We focused on restoring, reinvigorating the public health infrastructure, but throughout the report and other reports and the transition report from the commission, clearly, this has to be done through partnerships. Although there has been an awful lot of talk about the potential for those partnerships between the clinical community, the care providing community and public health, as we have set about our research and went out there, those linkages really haven't happened as effectively as possible. It is still very, very difficult to get surveillance information from the providers in a way that is usable on a community scale or a state scale.

So, I think the incentives are there and the report does address that, but I would have to say I went into this project thinking that, boy, the benefits are clear and this is a natural partnership. There are lots of impediments there, starting with confidentiality and going beyond that, that right now the appropriate incentives aren't there for those partnerships to really happen. I would hope they would take off and clearly we tried to target that, although I would have to say one of the shortcomings is we haven't had really good models to show that works for environmental health.

DR. DEERING: Are there places in the report where these barriers are articulated, where you talk about the potential for the multidirectional information flows and address the impediments?


DR. DEERING: Would you maybe afterward just tell me where to -- I am not sure that --

DR. BURKE: Okay. I will give you the thick version.

DR. DEERING: Oh, good. That would be fine. Good. Thank you. The more detail we have the better.

DR. BURKE: And the way that we think we should begin is to build upon the way we have overcome them in the more traditional sense of infectious communicable disease and move forward from there into the chronic diseases and then to exposures.

DR. DEERING: We are aware of the stovepipes within any given sector and we certainly don't want to just expand the stovepipe sector wide.

I have a follow-up question for Michael also. I am hoping maybe to get a copy of your comments afterward. I know it will be on the tape, but it would help me to get it in writing.

You talked, I believe, among the points that APHA would hope to see, a national advisory board to guide the future course of the NHII. A couple of questions -- well, a statement and then a question about that. That particular component and maybe one or more others of the elements that you raised there does suggest the NHII as an "it" and I don't mean i-t, but I mean as something that exists. And we keep saying, no, it is not an it. It is a virgula(?) distributed decentralized de facto, you know, whatever, which may be a cop out on our part, but it is also a reality-based statement.

So, my follow-up question would be, number one, did APHA see or interpret the NHII as an it? Secondly, whether or not you did, would you elaborate a little bit or did you do any talking about the nature of this advisory board, because whether or not it is an it, there could still be pros and cons to some sort of an ongoing process to talk about the it or the non-it.

So, I am just wondering if APHA actually looked at that at all?

MR. BIRD: As an it, yes. To go back to some comments I heard this morning was that there needed to be some sort of an implementation -- what I heard was people asking for some sort of an implementation process, which it seems to me would require an it and that there be targeted sort of populations and a process laid out so that you have some sense of is it working or who should we first attempt this with and in a sense as a pilot working with various populations.

If there is going to be some sort of feedback, well, then that has to go back to somebody to modify the approach or say this is working or this is not going to work or we need to do something different.

There is one point I want to just also touch on that I neglected to mention and that was in terms of much of the language that deals with the rights of individuals and the protection of individuals and I guess drawing on my own experience in communities and coming from Indian communities is that what about the rights of groups in terms of the protection of their information, in terms of the protection of if something happens, what is to protect a community or a population from being labeled or -- case in point and this may not hold that much water, but in terms of when the hantavirus outbreak in New Mexico and Arizona, the fact of the matter is people really didn't have a clue what was causing it early on.

You begin to get people saying, well, it was sort of because it happened, I think, first in Indian communities and people reacting in a very fearful way in terms of not -- people cancelling their travel plans, people not wanting to go into the area because -- and it is sort of, I think -- initially, if I am not mistaken, sort of took on the connotation of something that was happening out there with Indian people and I guess in terms of -- I think we need to be concerned about the labeling and the potential that could happen if something were to -- an outbreak of something were to occur and/or the misuse of that information or in a variety of ways.

It seems to me that what we all want -- we want to maximize the upside and minimize the downside on those things. There are going to be things that are going to come up, unexpected things that will happen in this process and who, in fact, is going to be able to address that?

DR. LUMPKIN: I would like to thank the panel. It has been very thought provoking. We appreciate you coming to spend some time with us.

At this point, we are going to have some public comment. We will have a few minutes for -- if Dr. Jones is here?

Agenda Item: Public Comment

DR. JONES: Does anybody need the alternative format?

DR. LUMPKIN: Did we get a diskette version of that? We would like that so we can put it on the web site.

DR. JONES: I am with the National Rehabilitation Hospital Center for Health and Disability Research and I would like to talk with you today from the perspective as a member of the disability community and also as a person who is actively involved as a health care researcher in disability and health research.

First of all, I would like to speak in terms of people with disabilities and one thing I wanted to point out, since we are looking at a vision for the future, is that many data collection methods are not accessible to people with disability, especially since some of the big national surveys have gone to the CAPI(?), you know, the computer-assisted personal interview. I haven't heard yet that any of those computers have adaptive software on them. Usually in that case, you are not going to get as accurate data from a proxy as you would from the actual person.

Also, I think in terms of the privacy that many people with disabilities will not fill out health care information on the web especially, if they have access to the web, because they have a fear that that information may be used to make decisions about them without them. So, that is, I think, something that needs to e addressed. People need to be assured that the information really is confidential and no one is going to use that information against them because the ADA, notwithstanding, attitudes about disabilities haven't changed all that much. There is still a lot of discrimination out there.

People with disabilities understanding that we will not give as freely of information that might be very valuable in terms of improving their quality of life, as well as informing health care researchers.

Also, consumer information needs to be available on the web about provider offices accessibility. This is something that health plans could gain as they are implementing web sites. They have to do that assessment anyway for Medicaid, if they have Medicaid members. Since they have to do it, it would be a good thing to do to put it on there so that the person with disabilities wouldn't have to call the whole provider handbook to find out who is accessible and who is not.

Also, I think that in terms of health care information, we need to know more about the person environment fit. The web is not always a disability friendly environment, not all web sites are accessible. It is getting better, but still a lot of them aren't.

Also, the environment in terms of health care services or the provision of health care services is not always consumer friendly and we need to know where some of those problems are so that interventions can be made. In terms of as a health care researcher, we need to -- first of all, some of the documentation and various things, tools of research, need to be accessible for people with disabilities. We need to be -- of the ones being studied, not the ones doing the study and you don't want to sacrifice a tree to print something out if the format on the screen is not accessible.

We need health care information on prevention and access to health promotion programs. We need to know how people with disabilities feel about health promotion, how they see it as affecting them in their lifestyle, affecting them physically. We need more information that way. As researchers we do.

We also need a method for tracking secondary conditions because that is one place that we are going to have a chance to do something about health care costs and to improve the quality of life of people with disabilities. A Disability Framingham would be really good if somebody could fund that, to track secondary conditions, to track health promotion and that sort of thing.

Also, we need more data on alternative care as more and more people are using alternative care as it gains some favor within the medical community. We need to know more about how people with disabilities are using alternative care. The literature would support that they are using it maybe even more than people without disabilities and in some cases this can be very beneficial but it could also be very detrimental.

I think my five minutes is probably up. Thank you very much for the chance to share this.

DR. LUMPKIN: Thank you.

Dr. Weinberg.

DR. WEINBERG: Thank you. First, my name is Armin Weinberg. I am the co-founder of the Intercultural Cancer Council. I am going to read oral testimony on behalf of Dr. Gilbert Friedell, who unfortunately is in recovery and was unable to attend today's session. So, if you will let me first read his statement, I would then like to make a couple of personal comments and would be happy to answer any questions if you have any.

Thank you for the opportunity to provide comments on behalf of the Intercultural Cancer Council concerning data issues related to cancer. In particular, my comments will focus on the collection and analysis of cancer information from racial/ethnic minority and medically underserved populations.

Recently, improvements in cancer incidence, mortality and survival have been reported for the U.S. population as a whole, but as an Institute of Medicine report entitled, "The Unequal Burden of Cancer," made clear in January of 1999, some populations, notably minorities and the medically underserved, have not seen these improvements. The report pointed out that the cancer database in the country does not adequately reflect the burden of disease borne by these populations and called for enhancement of our systems of cancer data collection and analysis.

The report noted that the NCI's Surveillance, Epidemiology and End Results, better known as SEER, program provides high quality data from the populations which it covers, giving us an approximation of national cancer incidence and survival rates. However, the report pointed to examples of minority and medically underserved populations not covered by SEER, including both white and minority populations of low socioeconomic status.

The report, therefore, recommended that SEER be significantly enhanced, including expanding its program coverage to include those minority and medically underserved populations, which SEER is currently lacking.

The report also recommended enhancement of the Centers for Disease Control and Prevention, National Program of Cancer Registries, not only to add to a national cancer database, but to provide states and local areas with the database necessary for the development and implementation of effective cancer control programs.

In an effort to provide further response to the IOM report in September of 1999, with the support and participation of the National Cancer Institute, Centers for Disease Control and the American Cancer Society, the Intercultural Cancer Council convened the first of two data working groups to discuss improving data sets concerning cancer in ethnic minorities and the medically underserved.

Participants also included the National Center for Health Statistics and the North American Association of Central Cancer Registries. Working group members represented several minority and medically underserved populations, both white and non-white, and prepared responses to the five detailed questions focused on data needs needed to provide a true picture of the cancer problems confronting these populations and the data collection barriers, which need to be addressed.

There is, by the way, written testimony which goes into a little more detail.

The working group made 13 recommendations for improving cancer data collection and analysis for these populations. These, as well, are detailed in the written testimony. They include the collection of socioeconomic status information on individual cancer patients, the development of methods to overcome data collection communication barriers, collection of nativity data, the involvement of the community in data collection and in the development of culturally appropriate cancer control materials and survey instruments and training epidemiologists and related professionals from minority and medically underserved communities.

The second data working group convened by the ICC in November of 1999 discussed the current status of data collection from minorities and the medically underserved, as well as the recommendations from the September meeting. The group included a few participants from the first meeting but members were drawn largely from those organizations collecting and analyzing cancer data.

In breakout sessions, this group developed several proposal actions in response to recommendations numbered 1, 2, 7, 11 and 12 from the September meeting. Perhaps the most important from the standpoint of this committee are the action items concerning the need to collect SES information concerning individual cancer patients before these patient data are aggregated for analysis. Again, details are provided in the written testimony.

There are several actions recommended by the November working group, as well as the detailed reports of each of the two working group meetings will shortly be available on an NCI web site. Information an also be obtained from the Intercultural Cancer Council.

Finally, it should be noted that in addition to the need for addressing basic cancer data needs for assessing incidence, mortality and survival in minority and medically underserved communities, populations, good data research needed to develop strategies for dealing with the evident inequalities in cancer care made apparent in the April 1999 report of the National Cancer Policy Board.

The recent further report of the board, "Enhancing Data Systems to Improve the Quality of Cancer Care," provides additional comments and advice about this issue. It would seem particularly advisable in this context to consider the recommendations of the two working groups convened by the ICC in order to assure inclusion of cancer data from minorities and the medically underserved in a national health database.

That is the end of the written presentation.

I would like to make a response. I guess you asked a question about cost. I don't know if you will ask me that. So, maybe I can just comment. I do think that there is a significant cost to not providing an infrastructure that would have some sort of national perspective. What is done at a local level, many of the things that were discussed in these meetings that we held, clearly shows the need for data that can be used in local programming and allocation of resources, as well as education. So, I think there is a second, flip side to the cost question, which is if you don't provide that kind of infrastructure at the national level, that has sort of state and local implications. You have cost of missed opportunities and missed programming.

I will stop there.

DR. LUMPKIN: Thank you.

We have time for a few questions. Let me just first say that while I agree with you on the issue of cost, what I have found is that when you are dealing with a legislative body, be it Congress or state legislature and they have before them a cost issue, they don't see the cost out in the community. So, if you have any data or anything that would help us quantify the cost of not doing that, that would be very useful.

DR. WEINBERG: Okay. I think we might be able to help you on that. I can say, for example, in the State of Texas, where I am from -- I am from actually Bailey College of Medicine --

DR. LUMPKIN: Everybody coming into D.C. is from Texas lately.

DR. WEINBERG: But, you know, with the SEER database -- and I assume all of you are familiar with the SEER database -- one of the things in talking to our legislature and our medical leaders in the department of health, for example, it makes a very interesting statement is that in the SEER database, of course, Texas does not have a single resident because we have no site that participates as part of SEER. Therefore, when we look at this wonderful, very rich, very capable data set that we see as tracking successes and issues in cancer, there aren't any Texans.

So, we have pockets. We know we have pockets, population pockets that are clearly not necessarily -- that are presented, which could if we don't have an infrastructure, cause us to miss important findings. Likewise, there no Appalachian pork in the SEER database and we do know from Dr. Friedell's work that there are different rates of cancer, which are being seen in those populations that he has been studying, that go contrary, if you will, to the winning the war on cancer, which looks like we are having decreases in cancer rates.

It is not the same as certain populations in the eastern Kentucky experience.

DR. LUMPKIN: Thank you very much for coming and participating.

We have one additional panel that will convene at 3:15. My intent would be to take that panel until 4 o'clock and then adjourn. So, at this point if we wanted to have some committee discussion, we can do that and then take a break.

Agenda Item: Committee Discussion

Do we have workgroup discussions or 21st Century, I think they intend to develop an outline and start interactively fleshing out that outline?

DR. FRIEDMAN: Based upon the meeting that we had in December, I have tried to see if -- put that in a highly, highly provisional form to paper and then I am going to basically send it back and forth a couple of times to Rob and Ed and Gib and then at a second stage, we are going to send it more widely to other members of the committee and to other people from NCHS, who are involved.

Hopefully, by the November meeting, we will have something, which is a first draft that we will feel comfortable -- a rough first draft outline that we will feel comfortable sharing and getting feedback on.

DR. DEERING: For those who may have missed the December 19th meeting, I just wanted to repeat the general thrust of the decisions made there with regard to the NHII approach, which is that we would proceed on a short term basis to redraft, draft, another short report, conceivably even shorter than the current report, that we would hope to get an approval process in June, at the June full committee meeting, for presentation to the Secretary at that point.

Among the other things that this short report would be, besides trying to sort of make a statement that we are coming and these are the broad issues, my understanding was that it will be identifying more specifically the components of the areas that are going to be looked at in depth. My staff and I are hoping to be able to have something useful for discussion in February. How far and how complete it will be, I don't know, but it will be something on which we will need and appreciate input and that can keep us moving forward on that timetable and incorporating in any other elements that need to be incorporated into it.

We are happy that Susan Kaman(?) may be available, too, to help work with us on that.


DR. ZUBELDIA: It is a change of topic, but one of the things that has been threaded throughout the hearings that we have had on the NHII is the difficulty of conceptualizing or visualizing what this is, other than an it. If it is not an it, how do we express that clearly? How do we express is it if it is not an it?

I have been trying to figure out what is it and maybe what this could be expressed at is a set of communication standards or message standards that would allow the interchange of messages that we need between different parties, so people don't think that there is a database somewhere or there is a natural telecom infrastructure underlying it.

Is there some way of establishing the connections in a standard way that standard information can be sent back and forth? That would give a different model than the global database. I don't know if that is a way to do it or not, but I think we need to provide a way in a report, whatever report we have, that this is not a giant database in the sky and we need to -- we need to say somewhat what is it.


DR. FRIEDMAN: Kepa, I agree with you about the difficulty in conveying what the it is and is not and, in fact, we are having some of the same difficulties, just in terms of health statistics. We are using the word, as Ed Hunter has pointed out, in a multitude -- we are using those two words in a multitude of different ways at the same time. I do think in terms of the NHII, we have a definition and one of the things we could do that we haven't done yet is try to flesh out a little bit each word or phrase in that definition by way of examples.

I have not committed the definition to memory. I am sure Mary Jo has, but --


-- and standards, policies and it may be that trying to -- words around each of those phrases by way of explanation might help. I mean, I am -- while I think that the communication standards are an essential part of that -- not all of it -- yes, exactly.

DR. LUMPKIN: And actually, Tom, there are a couple of things that we need to look at. One is that we should keep the scenarios. One is, I, last week, was contacted by a reporter from The Wall Street Journal, who was just doing some background discussion probably -- I see a couple of other people shaking their heads like they have been contacted also, but she really commented on the clarity of the scenarios and how it really helped her understand that. I think that that is a very important role.

I think within the context of trying to describe what it is, I like Dan's suggestion of trying to enhance our definition, but as i was listening to the discussion today, I really was struck by the fact that what we are talking about is not just enabling technology to transform health care, but we are actually talking about transforming health care to put the person in the middle and not in the sense that we think about health care being about treating one person at a time, but it is really looking at how does epidemiology and the things that we discover in disease surveillance, the care of an individual or the decisions that that individual has to make.

So, in many ways, what the NHII does is to use currently existing and soon to be developed technology to allow an individual to be at the center and in control of their health and health care.

DR. DEERING: I wanted to add that I think it was Dan and/or Jeff or the two of you together, who talked also about taking a longitudinal life events approach, looking at determinants of health models. Jeff did e-mail me some more of his thoughts on that. One of the proposals had been to either try to come up with another additional scenario or to thread throughout a short report or to use as a linking factor, shall we say, a more longitudinal story that takes

-- say it can be a person-based scenario, but it involves the -- it depicts the interplay with the data with the public health entities and actors and with the clinical encounters. So that, you know, more real life orientation, you see the interrelationships and the benefits.

The strong thing that came out and I was wondering about the scenarios -- I was just asking myself this morning, as clear as they are, the other thread that comes through is talking about the benefits and the scenarios talk about the what. People are supposed to be able to discern the benefits and I was going to say we might at least take one look at the scenarios to see whether there is an opportunity within the scenarios to just tweak them ever so slightly so that the concept of benefits is more direct and more emphatic.

MS. GREENBERG: I was struck by someone -- I think it was the gentleman from the consumer group, was talking about burden and how diverse these people are and people's lives and this is a theme and people have fewer minutes for lunch, today notwithstanding, less time for -- you know, for everything and that in a sense in reading some of these scenarios, it was like -- almost got the sense that, you know, who is going to have time for all this, but there are ways, when you talk about benefits in which they have really -- this can save you time. I mean, you can spend hours trying to, you know, find your kids' immunizations or whatever, I mean, when things are so disorganized and not available, you know -- something to that aspect as a benefit of actually saving people -- helping them to be more directed, I mean, more targeted in what they are doing.

They also get overwhelmed at the thought of all the Internet sites and we have talked about that. Obviously, you want not just this plethora of information but the infrastructure that we are talking about, the vision that we are talking about really has to also have efficiencies in it.

DR. DEERING: If we succeed in changing the title away from the National Health Information Infrastructure to Better Information for Better Health and we cease to talk as often about the NHII, then it may be less difficult for people to see that this is not a creation to be planned, implemented, measured with nice tight boundaries.

I mean, that was, I think, one of my concerns about the APHA's approach is that it sounded like they thought this was a federal project. Certainly a partnership project, but a very discrete, specific project with very well mapped out parameters and you were going to put it into effect and you were going to measure it in and track it and evaluate it.

I think as I understand our approach, there is room for aspects of the pilot project development of measuring, of oversight, of taking the calls regularly, et cetera, but this is certainly not to be a federal initiative with such well-defined parameters.

DR. LUMPKIN: And I think certainly as we describe it, HIPAA is a good example, I think, of that process because as much as people talk about the administrative transaction standards, those aren't really federal rules. I mean, they are federal rules, but they are not federal transaction standards. Those standards were developed by standard development organizations.

Much of what we do, some of it will be done by government and certainly that we have heard that people want them to play a role, but other parts of it have to be played by various private sector groups. It is just like the -- you know, once you develop the interchange in the data standards, things like smart refrigerators become possible, but we don't see that the role of the Federal Government is to develop or make those smart refrigerators.

MS. GREENBERG: They know if you weigh too much, they won't open if you try to get into them?

DR. LUMPKIN: No. I think they are called web fan or cue pods(?) when the milk is gone or something like that. You know, the dates -- you have to open it up. You smell --

[Multiple discussions.]

But, you know, those kind of things, where we actually look at what is trying to create the environment where this better information can be used for better health. So, I think that that is the kind of pieces that we need to pull together.

DR. FRIEDMAN: Can I mention one more thing, going back to our 21st Century --

DR. LUMPKIN: Oh, no, you had your opportunity -- no, go ahead.

DR. FRIEDMAN: In addition to a first draft, high level outline of a final report, the other thing that we should really return to at the February meeting is the process that we are going to use, not so much for developing the report itself, but for developing the subsection of the report that essentially deals with recommendations and a plan, et cetera, et cetera.

We heard some comments this morning from Delton Atkinson and Alana Knudson-Buresh about that. We have had

-- we have had discussions about that in December at our joint meeting of the NHII. Ed Sondik has provided some suggestions about it and I think we really need to take the opportunity to think that through a little bit more and, hopefully, make some decisions about what kind of steps we want to take to get feedback and to have more an interactive process.

DR. LUMPKIN: Let's take --

DR. SHORTLIFFE: As you know, I am new on the committee and, therefore, I speak with a little bit of ignorance about the details of what has gone before, et cetera.

DR. LUMPKIN: Clarity.

DR. SHORTLIFFE: Probably clarity.

But I find myself reacting to something that Mary Jo just said. Although what you are describing here is not a federal project, there is a federal project that it can be -- that it could influence and ought to influence and that is the NGI research agenda, the Next Generation Internet research agenda. Understanding that connection, how health care can be a driver for the way in which the Internet evolves, what the research agenda is that the Internet research community has identified.

I think one of our -- one of health care's unfortunate lacks up until now is that we haven't had as much impact on the way the Internet has evolved, as we might have, and it shows in certain decisions that have been made over time, just because the health care needs have not really been on the radar screen.

So, part -- and I don't know to what extent this point is reflected in this document, but I think pointing out the importance of the health care community being visible to those who, in fact, are doing the research that will define the Internet five, ten, twenty years from you and be participants, really, not just sort of rabble rousers, but really part of that process in much the same way that the defense community has been up until now and energy has been and NASA, which has been a major driver of the Internet up until now. I think the health care community could be much more involved in pressing that research agenda.

You know, we talked about the importance of authentication, really feeling comfortable about security concerns and, quite frankly, the needs of e-commerce when it comes to security and authentication are just simpler than ours. We, therefore, ought to be pushing the security of the research agenda of the Internet of the near term.

I would like to somehow see that reflected in the messages that we are conveying.

DR. DEERING: Because you were talking about the health care community being visible and present, I certainly know that that is one of the powerful messages in networking health. On the other hand, you were talking about the NGI, which is a government initiative, a participatory government initiative, as well.

So, I think what would be -- what we will be trying to do and it would be helpful to hear from you is how when we talk about what the Federal Government does and how we talk about what it does both directly, what it does indirectly and then what it does just purely in partnership or even has no role at all. So, for example, to bringing health care -- the health care community into the NGI, is that a responsibility for the Federal Government or is that -- and how do we do it exactly and --

DR. SHORTLIFFE: I think there is an HHS role in being much more participatory than they have been in Internet --

DR. DEERING: So, it is HHS, not just the

private --

DR. SHORTLIFFE: Well, it is HHS -- yes, it is HHS and the research agencies, in my opinion, but I think looking to the ways in which NIH, not just NLM, HRQ, et cetera, can all be basically aware that this is a biomedical research topic, the Internet of the future. Biomedical research is not just the Human Genome Project, although it is certainly that as well, but it is -- the Department of Defense has recognized for a long time that research in communications and computing and infrastructure is their business because it serves the purposes of their mission and, therefore, they support pretty basic research. That is why we have an Internet today. They supported package switching in 1960s, with a very long term -- and they had no idea where it would lead, of course, in the 1960s.

But I think we need to realize that that kind of basic investment in information technology and communications and the Internet and its evolution is really an important thing for the health care research community and for those who think strategically about the role of information and support of health care, including in HHS, you know, should be much more visibly involved with and that may be one of the points we can make exclusive.

DR. LUMPKIN: So, that would be both, you know, basic as well as applications.

DR. SHORTLIFFE: That is sort of my point. I think there have been some very nice demonstration projects of what, you know, high speed networking can do today. So, I am really saying that in addition to those kinds of -- you know, right now, I think the NGI budget has about $5 million in it for the National Library of Medicine, for example, and those -- which is five out of a 120 million, 110 million, something like that, and of that 5 million, the vast majority is actually being expended on medically oriented demonstrations, what you can do with higher end networking; telemedicine over Internet two speeds, for example, that kind of thing.

But there is not health care related investment in the NGI underlying research activities and it seems to me there is a role for that as well. That is the point I was trying to make.


DR. ZUBELDIA: We have been talking a lot about the role of government and the role of the public health system, but if this is to happen, we will also need to have some way of how it will happen in the caregiver dimension, in the personal dimension. In the caregiver dimension, I think involved in the vendors, even the vendors are delaying or now working feverish under HIPAA and governing those vendors in the process, I think it is going to be very important because at the end, otherwise I would have to do something, applied software, create new packages, do something.

In the personal dimension, some sort of consumer type of vendor or consumer type of developer, Microsoft or somebody like that, that would create this personal health appliance. I saw you earlier exchanging between the two of you some infrared communication between your palm pilots. That is something that today --

DR. LUMPKIN: I am sorry. That was private.

DR. ZUBELDIA: You don't think about it, but it just works. That is a consumer type of appliance. That could be your personal health appliance that you carry with you and -- you infrared your records that you want to send. That sort of appliance for the consumer needs to be developed. I don't think it is too early to bring in those that will participate in creating the technical infrastructure for the health care professionals and for the consumers, so they see what new markets we are creating for them and they jump in.


MR. HUNTER: I guess only in a transition would we switch from talking about what is it to talking about what it is. I think there is some -- in listening to the back and forth on whether there is an it or not an it and what you are call the next report, I guess I have some discomfort about moving to a title as broad in the framework, as broad as to not include things like infrastructure and other things that really focus it on what the steps are that -- one of the thoughts I was having was you can differentiate the it of what it is that needs to be done, and the logically coherent it is the set of steps and plans and policies and standards and architectures and so forth from what the it would be that you were trying to get after, which is not a single, monolithic implementation, you know, a system, per se.

I think you want there to be an it in the report. The it is what needs to be done. Using words like -- I know the point is not to wordsmith, but what the it is is the set of things that need to enable where it is we want to go. I wouldn't abandon the it as being focused on the types of things that are being talked about and being so sort of avoiding the trap of their being a -- there is an it in there, but it is not a product.

DR. SHORTLIFFE: I had another reaction to this proposed title and I know it wasn't intended, but it could be interpreted this way. That is a kind of one way view of the infrastructure as a delivery mechanism for information, the title that you were proposing. It is the vibrant 2A nature of the Internet or the infrastructure that we are discussing, which is -- many of the things we want to take advantage of course, many of the public health ones really are delivery of information back in the government.

I am thinking about things like, you know, HCFA submissions of bills and, you know, starting to really do electronic funds transfer on the Internet and all these kinds of things, which are somehow or another not quite just information for health care or at least might not be conjured up by that title. So, you might want to bear that in mind in coming up with a title for the report.

DR. LUMPKIN: Well, we do have a -- since you are new, I have to tell you we do have a rule on the workgroup that is if you knock down one title, you have to --


DR. DEERING: Is there better writing through chemistry --

DR. SHORTLIFFE: I certainly understood the motivation. Then I was trying to think might it be too limiting.

DR. LUMPKIN: I think that is a good point.

I think we have got a plan. Are our presenters here because we kind of talked through a good chunk of our potential break. Maybe we can go to our final panel.

Is Dr. Crigger here yet? Okay. She has been here all day. If you would come forward.

We will start off with Amitai Etzioni.

Agenda Item: Panel 3: Stakeholders for Health Information

MR. ETZIONI: Thank you very much. I greatly appreciate the opportunity. I think about the subject a great deal and it is important for many purposes and I think that in the report I read, it was a very excellent report. It really covers much of what needs covering, in my judgment, and as I will try to illustrate in a moment, I think, follows the correct philosophy. I will then very, very briefly, because of time limits, I want to just mention two or three points, which may deserve a little extra attention.

Recognizing that privacy is applied and that it needs to be balanced, public health is a crucial discussion, we start with the assumption that a hundred percent of the turf belongs to privacy and anybody who has any other considerations, the burden of proof is on them and it does not require any concessions. So, the starting point for saying that proof on claims is public health, which is important, as privacy is important, they are both important. Now we see what we can do, if we can serve both and how we can avoid conflicts or depersonalizing and so worth. That is from my viewpoint the right way to think.

Second, the new policy rules, which have been issued by the Clinton Administration, changed from the draft to the final resolution in one crucial unfortunate manner, which you do not follow, maybe because -- and that is the assumption that the burden will be on each individual. I think to give protections which are institutionalized and backed up by the government and not largely, assuming that each individual will understand all the valuable information that will be used, we have to say "yes," "no," "maybe" of information about them.

The reasons are two. One is there are many studies I am sure you are familiar with. When it comes to health care, people do not understand what they have been asked and they are too easily misled and easily confused. It is not the same as buying a can of beans in the supermarket, when you are asked about bypass or information about bypass.

So, that is one reason they need institutionalized protection. Second, the main danger here is coming from the private sector, not from the government in this United States these days. Therefore, it is the government that --

especially as you are not supposed to delegate to the computer. So, that is why I celebrate -- basically, the -- which comes across in your report is that you are sensitive to the fact that you need other protection and not simply rely on individuals to do so.

Now, as to my points, one they are different and two, I am happy to see that you expand the report a bit. I know that is not always extremely welcome, especially when you already did such hard work. I differ with your notion of not yielding to public safety. That is a very strong statement you have in there. Just imagine for a moment we recently had a nurse in California, who confessed in 1998, that he killed about 30 or something patients and we could not arrest him because confession is not sufficient evidence. They had to go and look at the files and they had to exhume 20 bodies.

Ladies and gentlemen, if you can exhume a body and look at the body, you could not look at the file, it seems to me a little strong. So, I think there must be some -- we can argue which ones -- public safety considerations will take place -- how to define them is also -- and that is a tough one, but public safety is not a legitimate concern. It seems to me too strong by light year.

An easier to resolve issue is -- I serve as a staff director for a commission investigating nursing homes. It is a very, very sad duty. The abuse out there, I am sorry, I don't think any of you can imagine what it is like unless you are out there on the investigative lines.

So, anything you -- I am sorry -- I don't mean to say anything -- I think should go a long way to accommodate authorities that investigate fraud and abuse in Medicare and otherwise. Most of this can be done as depersonalized data and such, but then you come to the point that you have evidence that there is Medicaid -- now you have to go to criminal proceeding and then you have to go into the file. I don't see why the Fourth Amendment would stop here. The Fourth Amendment says that there would be no unreasonable search and seizure. Therefore, on the fact of it, it recognizes that there is evidence and I hope you are not going to fly in the face of the Fourth Amendment.

Now, the other point, I am very concerned about the capacity to combine and depersonalize data with all personal data. It is a very tricky wicket because we are obviously good -- privacy and research is to get -- but the minute you do that, you come to the dilemma. Either you lose the key and then you can never combine this data with everything we collected before. Obviously, it is not practical to take all the data we have and convert it to the same codes and such, or you keep the key somewhere and then the privacy advocates correctly are concerned about people getting hold of the key and, therefore, the whole decoding will be useless.

Now, we recommended a certain treatment to that and you have some of that there, but it deserves an extra minute, that you would create a limited number, six, regional not for profits, very important, centers, who will be funded and supervised by a committee and they will be entrusted with those keys. There might be other solutions, but if you could have one national central bank or something -- and now is it necessary, but if you have too many, then, again, it violates the basic principles.

So, I think a small number supervised should be able to combine old data with new data. The data should not be at those centers because otherwise, again, you have a database, which can be easily penetrated, but the researcher was combined a de-identified database with a not identified -- they should be able to bring it to that center and they will do the combining and then return it to them.

That is one solution. The other one I am not technically competent to judge, but I am told that there is something called one way mashes(?). So, those of you who knows what that is, there are technical ways, which allow you to put data into a computer. It will be identified one way, but it cannot go back but it can combine from any one system. You have to bring in somebody else if you want to follow down that line.

Finally, the things I hope you will consider adding -- and actually there are two small ones. One is the law of technology. The story, which makes the rounds out there, is that privacy is dead and get used to it. That is a quote from the Microsystems. And many books, about six books, including from my colleague, Jeff Rosen, which talk about the death of privacy.

In effect, I frankly see it as a tug of war between the new attack mechanism and the defense mechanism and as often happens in their history of war, one of them takes precedent over the other for awhile. Among the most impressive defense tools is encryption and, of course, high powered encryption makes this more private than they ever were before. I mean, they are locked in a cabinet or we have -- messages cannot be read.

Therefore, you should discuss this as -- we are going to have in very short order, in fact, we already have, encryption -- so, the point is that by transmitting data, complete privacy -- it is also very often our best friend -- and many other such mechanisms, which allows to protect privacy better.

The last point is I think one should discuss the

-- investment systems affect this issue. Let's just talk about for a moment if -- for each procedure for capitation because in California much is capitated, you just review it by 98 percent or more, information -- even if you don't want to come out -- if you move to capitation, that would be a long stretch -- have a very big effect on this issue.

My wife is a physician. My son is a physician. I am surrounded with them. Every single procedure -- if my wife does five tests for a patient, she has to file five different pieces of paper and they all go God knows where. You know, they go to the insurer. Who knows? If their patient is capitated -- so, whatever we think about this system, all I am saying is when we discuss these issues, we should acknowledge at least that it is not done in some kind of vacuum there on a capitalistic system with all its strengths and its weaknesses.

Thank you for your patience.

DR. LUMPKIN: Thank you.

Dr. Crigger.

DR. CRIGGER: Thank you.

I have been invited by Dr. Deering to change slightly the focus of my testimony. So, if you will bear with me, this is not quite as well organized as it might have been. I am going to depart from the copy of the text that you received just a bit ago to speak rather more about codes of ethics for the health Internet.

Let me begin. I want to say that codes of ethics identify the moral values at stake in a domain of activity and articulate broad principles of conduct that serve and express those values.

One of those salient values, obviously, is privacy, so I am going to use that as kind of a test case, the illustration. Please understand that my remarks, while they are targeted primarily to privacy, I hope illustrate the kind of thinking that should go on about other salient issues and values with regard to the health Internet.

Having said that then, I would like to look at privacy in two ways very briefly; as a cultural value and then I want to draw attention to a dimension of the privacy question that seems to me often overlooked. Both speak, in fact, to the matter of creating conditions for trust in the collection and use of health information, which I take to be one of the really central concerns.

Americans today have a seemingly contradictory stance towards privacy. On one hand, we are deeply and sincerely concerned that others may seek and obtain personal information about us; the more intimate the information, the stronger a desire to protect it.

On the other hand, we are also curiously profligate about revealing information ourselves. We casually share our private conversations with whoever may be in earshot when we use our cellular phones in public places or even broadcast the most intimate moments of our lives to strangers on the World Wide Web. The former may evidence simple inattention, the latter surely represents a conscious, though one might argue poorly considered, decision to make ourselves known.

Both stances seem to me ultimately rooted in the Western conception of the self as autonomous agent. We see ourselves and our lives to be importantly projects of self-creation, never entirely unfettered, to be sure, but ideally crafted, wilfully and independently in significant measure.

One aspect of that project of self-creation is referred in different forms for much of the day, is to have meaningful control over how we are known in the world. We wish to be able to determine how we present ourselves in different contexts, which facets of ourselves we reveal and which withhold. This is not to suggest that this conception of the self is universally shared in a strong form in contemporary American culture. And I use "American culture" quite advisedly. Nor is it to suggest that our projects of self-creation ought never to be constrained in any way or that our choices about sharing information are always worthy ones simply because they are ours.

Discerning just what constraints our life in community may rightly impose, under just what conditions, is an ongoing challenge, both philosophically and practically. As this committee's interim reports and the Institute of Medicine's recent report, "Protecting Data Privacy," make clear, for example, there are important individual and public health reasons to allow access to and use of even potentially identifiable health information and even against individual preference in the matter.

Neither do I mean to suggest that our presentations of self are always innocent. We may, of course, be misdirecting others' attention to our strengths, rather than our weaknesses or we may outright mislead them. My point, rather, is that some such conceptions of self and of the work of a life underlie privacy as a value in our society. Some such conceptions inform our concerns that privacy not be abridged thoughtlessly or inappropriately, that information about us not be collected or revealed without at least our knowledge and in some cases our consent.

We have heard much today about choice and right and much about the harms that may befall us when the confidentiality of personal health information is breached: embarrassment, stigmatization, discrimination in employment or insurance. Such breaches violate the underlying notion of what it is to be a self in different ways. Stigmatization and discrimination, in particular, contravene the conception of the self as an autonomous moral agent in focusing on aspects of our lives taken out of context.

The part is made to stand for the whole; I am reduced to the datum of age, gender, place of residence, height, weight, health condition. This is very much of a piece, I think, with the kind of reductive objectification vigorously opposed by the disability community.

Rather less, however, has been said about the further prospect of exploitation, even when we are not materially harmed. The use of personal health information for marketing purposes, especially when such information is exchanged without the individual's knowledge or consent, reduces the self still further, to a commodity. Significant personal details become no more than a flag identifying me as a potential source of enrichment for one or more others.

Such affronts to dignity are recognized and condemned by the European Group on Ethics in Science and New Technologies, which asserted, and I quote, "Personal health data form part of the personality of the individual and must not be treated as mere objects of commercial transaction." In comparison, of course, the privacy and confidentiality provisions of HIPAA essentially allow ready access for marketing purposes, as I read it at least. Individuals may opt out of receiving further communication only after they have been contacted in the first place.

Harmonizing HIPAA with the European privacy directive and creating safe harbors, honoring the safe harbor principles that FTC has been developing is going to be a real challenge, I think. Fortunately, I am not a lawyer.

This thing is the sort of account we might give of why privacy matters and I hope it serves my goal of turning our attention to the sort of philosophical and ethical considerations that undergird our more often legal and political conversations about privacy.

Let me turn then to a second theme that I wanted to touch on quickly, which is what I see being a missing piece of the privacy puzzle. Much of our conversation has focused for good reason on developing technological means to minimize breaches. But consider the following scenario:

A resident and an attending physician wait for a hospital elevator in mid-morning. They take the opportunity of a few moments together to talk about an 84 year old woman admitted the previous afternoon. Their brief conversation continues as they enter the elevator and touches on the patient's diagnosis, pneumonia, the fact that she was admitted from Valley View Nursing Home, the one that had all those problems last year; that she seems not to understand that she has been hospitalized and that she resists treatment. She insists that Audrey, probably one of the nursing home staff, bring her the pink pills. In response to the attending's question, the resident notes that Mrs. Halberstrom seems to have no family in the area. He is not sure she has family at all. She has been on Medicaid for years.

The elevator reaches the resident's floor and he makes his way out through the crowd of two orderlies, a nurse and three visitors. Not even the most sophisticated encryption protocols or user verification systems or audit trails could have protected Mrs. Halberstrom's privacy. Absent a robust culture of respect for privacy, technology itself cannot fully protect the confidentiality of an individual's medical information. So, too, absent a robust culture of respect for privacy, rules, regulations and sanctions cannot truly safeguard an individual from that first, even unthought-about exposure.

To remind us of this is neither to disparage nor to discount our well taken concern to create the best technological and regulatory safeguards we can for personal health information. That includes anticipating how new technologies may generate new kinds of information and new ways in which that information and privacy can be imperiled. It is, rather, to call attention again to the human dimension of the challenge of protecting privacy and to underscore the need to nurture habits of thought and practice that will complement our technological solutions and our legal solutions and better assure that their potential to protect privacy is appropriately realized.

In essence, it is a call to attend to the ways in which we might cultivate the faculty of discernment among all who handle personal health information. As the IOM noted in a somewhat different context in addressing the role of institutional review boards in good privacy practices for health services research, and I quote, "regulations and guidelines are important to provide norms, but they must still be implemented with the judgment and practical experience of individuals..." The IOM went on to stress the importance of education in this process.

Indeed, the Centers for Disease Control in the report they issued in 1995, "Integrating Public Health Information and Surveillance Systems also emphasized information and, in fact, did so as strongly as they emphasized technological privacy protections.

Certainly, engaging agencies and professional organizations in renewed and ongoing efforts to educate members about privacy concerns through formal programs is an appropriate activity. It is always encouraging workplace training. I would, however, hope to see such programs address more than just regulations and organization-specific policies and practices. Ideally, protecting privacy should be an ingrained habit of thought, not simply a technical application of rules or protocols.

This is where I think codes of ethics can come and help play a role. As I have mentioned, codes of ethics, of which there are many among the professional organizations and others involved in generating and managing health information essentially underscore and articulate the moral values of a community that creates the -- that recognizes them. They are reflections of the morally permissible standards of conduct that members of a group make binding on themselves.

Despite the fact that, unlike regulations, they are voluntary, codes of ethics do fulfill valuable functions. They help to create an environment in which ethical behavior, that is, conduct that conforms to and expresses the core values of the group, is the expected norm, not the exception. They provide a means by which a profession or group collectively acknowledges its responsibilities, not only to fellow members but also to those whom the profession serves.

Codes demonstrate the group's commitment to ethics and, of course, they offer moral guidance. Codes of ethics do not for the most part offer decision algorithms. Rather, the moral guidance they provide is to remind us of what ethical considerations we must take into account in deciding how to act.

No code is ever fully self-explanatory. To provide broad moral guidance, a code is necessarily written in general terms that can apply to the many different situations in which individuals will have questions about what the ethical course of action is. At the same time they help foster discernment, that is, they call on those who subscribe to them to exercise that very discernment in the process of specifying and interpreting the code in concrete situations.

I want to say that you all, I am sure, are aware that there are a number of codes of ethics that have been created in the last couple of years, especially in the last year for the health Internet. I hope you have all received a handout that outlines a couple of them, the major ones being the HON code, Health on the Net Foundation, the e-Health Code of Ethics, High Ethics, the American Medical Association's Guidelines for Medical and Health Information Sites on the Internet.

This looks like a fragmented community and to a certain extent it is. I think, however, there is much greater uniformity in collaboration than meets the eye. The overarching goals shared by all of these codes is to create a trustworthy environment for those who use the Internet for health-related purposes. All stress among the core values the obligation to respect the privacy of individuals and to preserve the confidentiality of the information that individuals provide and all recognize that privacy is not the only value at stake, but that synergy among fundamental values ultimately creates conditions for trust.

I think if you look -- I can direct your attention to the table that describes content areas, focus and audience and goals of the codes, you can see the ways in which they do, in fact, overlap in significant measure. I am going to talk mostly for the e-health code as a foundation and I should be clear here, I serve as project editor for the e-health code, along with Tom Murray from the Hastings Center.

We were, in essence, consulting participants to the process and I am still involved with the e-health code and with the ways in which the e-Health Ethics Summit and members of that steering group continue to interact with members of the High Ethics group to address the concerns that are out there in the public about this apparent fragmentation of codes.

I should say also that Dr. Deering participated in the e-Health Ethics Summit and there is considerable overlap among the personnel developing these various codes. Members of High Ethics were also members of e-Health and members of the AMA and HON, as well. So that this seeming, if you will, competitive ethics that is going on is rather less competitive and you might be concerned.

I want to just briefly, briefly sketch out the kinds of issues that were identified by the e-Health Ethics Summit as being fundamental values at stake on the health Internet. By "health Internet," we include not only informational web sites to which consumers can go and download to see specific information or whatever, but also all the information technology use there is supported by the Internet; data transfers back and forth for billing purposes, for public health purposes, everything that transpires across the Internet in terms of health.

The e-Health Ethics Summit found candor the open disclosure of the purposes, sponsors and content of the site to be very important. It is fundamental to trust. So, too, is honesty in presentation of one's self and honesty in the presentation or representation of products if it happens to be a commercial site selling products or services.

Quality. That is a word we have heard a lot and concern that has been expressed. Quality, data, integrity, what are the sources of information. How can I trust this site. Privacy. Obviously. We have also talked -- all of the codes in some measure talk about e-commerce, which I think covers essentially the responsible partner in relationships that organizations develop as they collaborate in sites.

Content providers for web sites that take their content from outsiders, insisting that each entity participate in the development or management or contribution of content to a web site. Subscribe to the code. Subscribe to the same set of values and best practices, assuring that users can trust the environment they go into.

In the final version of the code that was articulated as principle of responsible partnering. We also addressed on-line health care. That is the actual provision of individual specific personalized medical care advice over the web. Whether that is an e-consultation with a physician about a particular set of symptoms or health concerns, whether it is telemedicine, that the fundamental ethics and values of the medical profession itself apply here.

You might see this effort, all of these efforts to create codes as being efforts to integrate the various other profession specific codes of ethics that already govern the participants; business ethics, the AMA's code of ethics, computer programmers' codes of ethics, other IT codes of ethics. What the e-health and these other codes do is essentially bring them together into an overarching framework that is germane to all of these specific tasks and activities, all of the players involved and then tries to make it intelligible to end users, who don't happen to be members of one of the professional communities.

It seems each participant in the health Internet has potentially that individual end user. You may go on line as a physician looking for clinical information from the Cochrane Collaboration or you may go on line as a parent looking for information for your child. The codes have to be intelligible to and protect, serve the interests of all stakeholders simultaneously. It is a huge task. Implementing the codes is an even larger task. This is where all of these groups right now are struggling with issues of collaboration of how we support.

Do we have a seal program? Should there be some universal body, some non-profit code keepers, who will vet sites, who will do what you mentioned this morning, HON doesn't do, doesn't go and check up on sites and make sure they are actually following the code. That is an enormous undertaking.

It is also in many ways contrary to the very democratic, creative, open ethos of the Internet itself. Preferred solutions will find ways to use the resources of the Internet and to be self-policing, but to still have the codes be meaningful in some ways in the sense that each individual, each entity subscribes to them, honors them, upholds them in the different specific ways that are germane to their particular activities.

That is one of the differences I think you will find if you look at the codes is that the e-health code, for example, was drafted to be universal, to apply to sites worldwide, to be as general in defining the overarching moral framework as possible. The high ethics code is more targeted to the activities and environments of the for-profit dot com commercial providers, the Dr. Koops, the Dr. Spocks and the particular kinds of concerns about business transactions and partnering that occur in that environment.

The AMA guidelines are very much more specific still. They look at the kinds of expectations, the AMA as a professional medical organization and as a medical publisher will hold sites affiliated it, too, so that it gets down to the level of such specificity as telling you where you can and can't place banner ads on the site. The e-health code was not intended to deal with that. The e-health code was intended to provide the kind of articulation of value that ought then to inform each of these.

Think of them as exercises in specifying and interpreting what those broad principles, what a principle of candor means in a particular context.

I think, perhaps, I have already taken more of your time than I intended. I should stop there and be happy to answer any questions, except let me say that the process of these codes of ethics is in themselves one of the best ways we have of helping to assure that privacy and other values are honored. Technology won't do it. People have to do it and people surrounded by and in a culture that is aware of these values is one of the best ways we can start.

Thank you.

DR. LUMPKIN: Questions??

DR. FRIEDMAN: I have a question for Professor Etzioni.

It seems to me that the arguments that you have made both today and in your book on the laws of privacy are ones that certainly most of us in public health are generally speaking very sympathetic to and it also seems that this argument seemed to be more except the popular -- some of the European countries and in Canada than in the U.S.

My question is are there ways in which you think that we could move the discussion in this country so that rather than -- to move the discussion so that what you described as a more balanced point of view would be more readily accepted and more reflected upon in the popular media than they are today?

MR. ETZIONI: The public may not be as far from this balance than Carter Burns' viewpoint as some of the advocates, which is often the situation. One of the best ways you can see this empirically is when you ask the public do you think your privacy is in danger and so on and so on, 85 percent say "yes," but then you ask them any tradeoff questions, so, are you willing to 25 cents to protect it better or -- most of them go above. This suggests that if you -- then you say how much are you willing to pay for it. I think the public is aware that it is a more complicated picture, but if you want to go in the public arena, you face some very strong advocates.

I want to explain that. I went to a meeting that the Department of Commerce had on privacy and on one side of the table was practically all the United States GNP, I mean, General Motors and Kellogg and Disney and on the other side were Mark Hottenberg(?) and two other privacy advocates. How could this be held up by these four foundation kids and it suddenly hit me. The New York Times. Because the next day will say, you know, these advocates say, you know, that theory is there. You have a problem. I don't see any problem out there in the eyes of the public.

There is a situation, which I don't think you face, which is changes. When the private sector for profit-making reasons makes allies, then the political map changes radically. So, the reason we do not allow public authorities to read encryption is not only because -- objected to it. In the last restrictions, the highest power encryption to terrorists and to anybody else in the world who wants it, the even before fundraising for a presidential candidate in Silicon Valley, you can specifically trace the impact when you conformed a major part of the lobbies. To the extent that you do not reform profit-making directly, I think you are not in a -- in the public mind and I don't know how to get around those advocates.

The European -- we agree with is much more -- our privacy codes or suggested regulations say the privacy -- it is an inalienable right and it can be negotiated. It can be compromised. It can be contracted away. You can't ask your labor union or anybody else to speak for you.

Every time I go to Europe and I go to a meeting, I ask people in the audience if anybody is ever asked by anybody if -- I strongly suspect, but I have no more evidence -- it will not be the first time in the history of laws, that laws are passed to please -- let me just add one sentence about using self-regulation in the private sector mechanisms to reinforce -- if you empirically study -- mechanisms, for instance, the industry promised in 1996 not to approach children 12 years or younger without consent of their parents. There is a commitment there.

DR. SHORTLIFFE: I had a question about the extent to which using universal adoption, adherence to codes of ethics and all the publicity in the world about that, would really have an impact on the typical individual's concerns about whether or not their data were likely to be inviolate. I mean, I totally support the notion that we need to be educating -- I actually think quite a few institutions are taking seriously these recommendations and are trying to influence the culture within the organization about talking on elevators. You even see signs in elevators in many hospitals now reminding you not to chit chat about patients and the like.

I think that in spite of that and even with the adoption of some of these codes and a cultural shift, that there will always be that nagging concern that an individual has that, well, you know, most people may follow a code, but there may be somebody who is going to put it all over the National Inquirer, you know.

I think consciousness raising is healthy. I am not sure it is going to help us to get around the issue of the need to somehow or another reassure people that their data really are safe.

DR. CRIGGER: Oh, absolutely not. I quite agree with you. It is one piece of the larger puzzle. It is the kind of piece that can support other efforts and create these environments of trust. Will they ever be perfect? No. Do we need regulation in addition to self-regulation? Absolutely.

You are quite right about the power of money itself to corrupt or to subvert some other values. I do think that we are the worse off without the kind of consciousness raising, without making it an individual responsibility as members of communities. What do we owe one another in terms of protecting each other in ways and in places that regulation can't reach?

Part of what regulation can do is set a floor below which we can't fall. Part of what codes of ethics can do as the complement is to set an aspirational target for where we want to go. You are right. The implementation, the seal programs trustee, how to make those meaningful and yet not at the same time stifling -- I don't want to be a great advocate for the Internet. I am deeply troubled in many ways.

Part of what the Hastings Center does is try to look at all sides of arguments and honor the perceptions that come out on all sides and not find anyone perfect, frankly. But, again, I do think we would be the poorer without this kind of aspirational code.

MR. ETZIONI: May I add a sentence to that?

I very much agree that -- can make a contribution if -- simply taking care of part of the problem that we -- also will need education or support of the regulatory steps you want to take because they weren't taken in a vacuum either. That is what, in effect, you talked about a moment ago.

DR. LUMPKIN: I would like to thank you both for coming. We have, I think, had a very interesting day of discussion around the issues of privacy and some of the directions. This will be the -- as of this point, depending upon where we go -- the last hearing for the NHII and then we will continue to do work on the 21st Century vision, but it is also the last hearing in this cycle for that.

So, I would like to thank all the ones who -- people who participated on the panel and members and we will see you all in February, mostly all of you.

[Whereupon, at 4:00 p.m., the meeting was concluded.]