[This Transcript is Unedited]
Loews Hotel at L'Enfant Plaza
Washington, D.C.
TABLE OF CONTENTS
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.
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.
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.
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.
MS. BRUENING: Yes.
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.
MS. BRUENING: Yes.
DR. LUMPKIN: Is that the kind of thing you are talking about?
MS. BRUENING: Yes.
DR. LUMPKIN: Okay.
Questions from the committee?
Dan.
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. LUMPKIN: Mary Jo.
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.
Richard.
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.
MS. BRUENING: Good.
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.
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. LUMPKIN: Mary Jo.
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 t