1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Panel: "Legislative and Policy Issues"

Thursday, April 17, 1997
1:00-4:00 PM

Moderator: Kathleen Hall Jamieson, Ph.D., Director, Annenberg Public Policy Center, Philadelphia, PA

Dr. Paul Clayton, Ph.D., President-elect, American Medical Informatics Association, Professor and Chair, Department of Medical Informatics, Columbia University, New York, NY

Robert Gellman, J.D., Privacy and Information Policy Consultant, Washington, D.C.

Chip Yost, Legislative Director, Health, Office of Senator Robert Bennet, Washington, DC

Robert Harmon, M.D., National Medical Director for Preventive Services, United HealthCare Corporation, Oakton, VA

Margaret Gerteis, Ph.D., Director of Education and Communications, The Picker Institute, Boston, MA

Shannah Koss, Government Health Care Solutions Executive, IBM Corporation, Bethesda, MD

Joseph Henderson, M.D., Director, Interactive Media Laboratory, Dartmouth Medical School, Hanover, NH

Dr. Jamieson: We will finish this set of post-Partnerships Conference sessions by discussing the importance of information in our society. The Annenberg Public Policy Center is avidly involved with this issue and is working for those interested in it.

I will now introduce the first member of our panel, Dr. Paul Clayton, President of the American Medical Informatics Association.

Clayton: My remarks today will elaborate on a study dealing with the protection of electronic information. While conducting the study, we visited various sites at HMOs and other places. The entire document relating our procedures and findings is online at The National Academy Press.

We found that there are several threats to electronic information, the first ones being that some people may not have the resources to get data -- and security. The principle that we are talking about today is whether someone has access, though security systems, to confidential information, thus giving the opportunity to blackmail. This can happen electronically or by paper. The hacker is the other problem. The real hacker may just get information with nothing to be done with it, only ruin the integrity of the data. The malevolent hacker may act more destructively, trying to crash an entire system of files.

The biggest threat is the lack of policy, with the next biggest threat being difficulty balancing between those who use the system. In addition, security measures can be annoying. No one wants to do a 20-second log-in when they can make a simple phone call. In short, there is no absolute security. The real threat is the tremendous flow of information that results from the fact that a physician can pass information anywhere.

I have conflicting answers. In the pharmacy realm, the flow of information benefits managers. They met with us and reported that 80 percent of prescriptions are known in this country by the pharmacies. Psychiatrists' records may be confidential, but the pharmacy records are not. This of course leads to a breach of confidentiality promised by the higher levels. For instance, the medical information bureau is where the results of our tests go when we apply for insurance and so on. The accrediting organizations come in to play as well. No one is responsible for all of it, but there is a an interlocking chain of players.

The question of who is charged is raised. On the current policy there is a voluntary group: The Joint Committee on the Accreditation of Health Care Organizations. It is the most prestigious. The problems are that redress by an individual is difficult; penalties are not defined; there is little oversight for the interorganizational flow of information; and there are overall conflicting health policies.

There are no real policy answers to move us forward in this challenge. There are systemic threats as well as a lack of definition of fair information practices. Data are no longer controlled by a single organization, and economic incentives, insurance, marketing, employment, and other forms of unintended secondary use come into play. Technology permits the unobserved transfer of data.

This committee made several suggestions that we hope the Kassebaum-Kennedy group will consider with their bill. We would like to see some form of individual identification used. There needs to be access controls, providing that only the authorized persons can see the data. We need audit trails to follow the flow of information. We also need physical controls, such as security and disaster recovery. We need to protect the remote access points. We should encrypt the data with software as well. Some of our recommendations were to develop policies that would involve security plus confidentiality. Possibly a security officer and sanctions are needed. We need education for consumers and improved authorization forms, as well as patient access to edit logs.

To address the systemic problems, we have the National Committee on Vital and Health Statistics. We also have to implement consumer awareness about defining and adopting fair information practices. Again, a good, secure system calls for a universal identifier as well as a method of redress. In short, further research is necessary.

To conclude, you will never stop electronic medical records. This technology is too mobile, and paper isn't as well protected with the newer technologies for electronic information. Organizations do not feel the pressure, and we therefore need a more aggressive approach to confidentiality. The widespread flow of information is the greatest risk to the individual. Thank you very much.

Jamieson: I would now like to introduce Robert Gellman, head of the Confidentiality Subcommittee of the National Committee on Vital and Health Statistics.

Gellman: Thank you. I am going to talk about the work on the national statistics. I worked for a long time on Capitol Hill, and many things have failed up there. One move that has taken place is that in the Kennedy-Kassebaum Bill a provision was included stating that if Congress doesn't pass the privacy law by 1999, the Secretary of Health and Human Services (HHS) is authorized to write privacy guidelines.

The Subcommittee for Confidentiality had 6 days of hearings with computer users dealing with the medical information networks. We heard from researchers, insurers, law enforcement officers, and several other representatives. Based on these hearings, it can be said that everyone favors security legislation of one form or another. Having said that, most do support some form of legislation such as a uniform law that would attempt to deal with the confidentiality issue.

The second conclusion drawn from the hearings is that everyone prefers legislation to regulation. The problem that arises, however, is there is a tendency to want to handle things piecemeal. If you try to deal with this in pieces, it will not be treated in the best way. We need standardization as well.

Everyone says that confidentiality is a problem in the arena of medical care, and that it needs some legislation. Then everyone says we use medical records for social reasons and they can't be totally controlled. Everyone is right, but we still need confidentiality.

A few observations: Computerization has benefits for privacy, but people fear their records may be seen by hackers and such. Insiders are also a problem as they can use others' records. A lot of people use nonidentifiable records for research reasons. However, medical records today have identifiers on every page, and it is an enormous task to keep them confidential. With a computer you can do it in seconds. This will ultimately preserve the patient's privacy. Unfortunately, none of the bills do a very good job discussing the preservation of privacy.

If you saw the flow chart of health records, the truth is that they are no longer confidential. They are seen by hundreds of individuals, and they can have dozens or hundreds of individual records. Those people who are told that the information goes no further than the hospital have not been told the truth. Passing along of medical records is a consequence of third-party payments in our medical system. At the same time it is too expensive and too difficult to make the records private, yet accessible by the appropriate sources. In the Kennedy-Kassebaum Bill, the Attorney General has the power to access any record by subpoena, so again, there will never be any total privacy.

The Condit Bill is 90 pages long, but by the time we are through with the issue we will have a bill that is 150 pages long. The problems are that everyone is a good guy in this issue. Everyone needs something, and it is good versus good, not good versus evil. If we are to have third-party payments and affordable health care, we cannot accomplish all our goals without some give and take. We can only make progress with lots of hard work, which we have already been doing. The next step is the National Committee's progress, where we'll make suggestions to the Secretary in June. It will then be taken to Congress where all the decisions will be made. In Congress we have already been working on some of these same issues for the last two years. The bottom line is that the issue of patient records and confidentiality needs to be moved up on the priority list in Congress. Thank you.

Jamieson: I would now like to introduce Mr. Chip Yost, Legislative Assistant to Senator Robert Bennett.

Yost: I would like to say that I am fairly new to this area, and my colleagues before you may have had a lot longer period of involvement. Here is the proof that Congress does the best and worst work under pressure. We simply have not been all that successful in establishing and maintaining rationality on Capitol Hill because of the various groups involved.

What is important is that, as we craft the legislation, we are careful not to set this all in concrete. We may need to change it in 20 years, and that will not be an easy task. We also want the "plumbing" to work. We want the components of the system to work so that all continues to function while the other is working as well. I was very naive when Don Detmer, Senior Vice President at the University of Virginia, came to me when we thought we should get involved. We all agreed that we should work on this. What is most remarkable on the Hill is that these different groups say that they will support the legislation if we solve their problems. When we solve their problems, we get them coming back saying, "We still oppose it because it still may not solve all our problems. We will get back to you." This is the atmosphere we work in.

In closing, we are committed, and we think that ultimately we would prefer a little more guidance from the Hill. They will write the legislation. But the data requirement in the Kennedy-Kassebaum Bill was added on the floor by the Finance Committee, which has made this process very long with all the little twists and turns that occur. I think we all want to come to a resolution. We can all resolve this thing, but we all have to start in that process. Thank you.

Jamieson: We are now open to any questions. I will start by asking if there is some kind of hierarchy to define what is most important in confidentiality.

Gellman: The question, as I heard it, is whether some records are more sensitive than others -- whether psychiatry, AIDS records, and so on, are more important. The bottom line is that, if we define levels of importance, people could be subject to three or four different laws, depending on how many different problems they have. And again, what is sensitive to one person is not necessarily sensitive to others. We cannot operate a system that would assign different weights to different information.

Audience: Is there an idea of ownership of the records in the Committee?

Clayton: I like to say that no one owns the records; we are more like custodians. We don't own them outright, and so we couldn’t sell them, for instance. But we are taking care of them.

Gellman: The concept of ownership is very problematic. Someone could own a piece of paper as with the old way, but ownership is very unhelpful in this case.

Audience: I feel I own my record in California -- is that wrong now?

Gellman: It doesn't really matter. The right personnel have interest in information only -- not the record, itself.

Audience: Then what are the rights of the patients?

Clayton: We have been hearing that there is no real concept of ownership when it comes to patient records.

Yost: I think it is important that people have the right to see their records, which many don't. I use the example of my business transactions where I get a copy and the other guy gets a copy. We can go in circles trying to figure out how to set up a system where patients have this right and where their privacy is protected -- maintaining this balance is difficult.

Audience: I think it is very important to many citizens for their own protection.

Gellman: Your comment is a fair one. But in general, the bills that have been proposed will provide better protection for records than any other law in the country. Whether doctors own the information or not, they have the right to do what they want.

Jamieson: Instead of talking about ownership, let's use the terminology "protection of the information to be changed." We can talk about the Freedom of Information Act in conjunction with this idea.

Gellman: Every bill will give patients open access to their records, but there will always be exceptions.

Clayton: There are provisions in some cases where doctors can see something as detrimental because there may be information that if revealed could lead someone to commit suicide. Then again, what if someone refused to give a service provider permission to have their records in the computer? When we have systems that work only by computer, we may not be able to help them with the proper care.

Gellman: You can also always sue your doctors for your records under the malpractice law, but this suggestion is not recommended.

Audience: I believe that there is legislation in Massachusetts where authors say it is patient-driven and patient-centered. Can any of you speak on that?

Yost: I am not familiar with that bill.

Gellman: I am also unfamiliar with that bill, but I will offer a general comment. There are so many people who use an individual’s records without that person’s consent. And no matter what the State laws say, federal persons such as the Attorney General will still have that power. There are too many other higher levels. It is hard for patients to protect their own interest here. It is hard for the people to understand their rights and sign the proper forms in all conditions. People waive their rights all the time without really understanding their situation. They might do this, for instance, if they are in pain and desperately want relief.

Clayton: People simply don't have the right representation, so they must be more aware.

Yost: I might add that in part this is a function of our health care system -- the customer in many cases being the insurance company, HMO, or employer -- as they are the ones paying. In many cases, patients may end up signing a form without the opportunity to learn the meaning of what they are signing, as they are not the customer.

Jamieson: Do you see a differential in the amount of patient confidentiality that will be used?

Yost: There may be some times when confidentiality may be more of a problem. I don't want to say HMOs are not careful with information, but many times information floats around different offices and is sent to the wrong place.

Audience: Bob, you articulated some date that the Kennedy-Kassebaum Bill lays out, that kicks the responsibility for developing privacy guidelines back to HHS. What happens during the 2-year timetable in terms of all the institutional knowledge, and does the Bill state when all the gathered information must come together to be utilized to set up legislation?

Gellman: The Committee would love to help, but there is no formal process in this area. If there were some expertise to help draft the legislation, we would love to implement it, but that wouldn't solve the political problem here.

Yost: To overcome the political problems is the most important priority.

Audience: I am curious to know whether any help could be derived from studying the information systems of the Department of Defense (DoD) and the Veterans Administration (VA) Hospital. Would studying their systems of privacy be a help?

Gellman: DoD gives difficult issues. The employees have a lot of specific records, and the authorities do have a lot of rights to individual's information. The VA has some administrative problems in terms of how the information flows. There is a specific part in the Condit Bill addressing this and how to take care of it.

Clayton: Health Care Financing Administration has the most records in the world, but the intraorganization environment is where no one is in control. When the information is going from here to there, no one is in charge.

Yost: I got a phone call from a reporter in Utah who said I was violating his First Amendment rights by not disclosing to him the Senator's medical records.

Audience: Some of these issues are on some kind of international scale. Are there any plans for international implementation?

Gellman: That is a good question. There is an international control, but we don't know what the different countries want to do themselves and what they want to do with us in this matter. It is going to be very difficult for any of us to address. Some of these things will not be able to be addressed.

Audience: It's my understanding that the law forces are interested in preserving unfettered access. Is this likely to be a significant legislative factor?

Gellman: It's a very difficult problem. They need to be able to get access to records and prosecute criminals -- what are the procedures before they get records? Any procedures or requirements you impose will increase costs. How do you balance off these different interests?

Yost: It's always interesting to talk to the FBI. They believe they should be exempt because they have a good cause. What should they go through to get the records? They shouldn't be able to just walk up and get medical records.

Jamieson: Thanks to our first panel. I would like to introduce the members of our second panel. Robert Harmon will be our first speaker.

Harmon: I would like to shift the focus from information about the consumer to information for the consumer. I would like to congratulate HHS on the new healthfinder™ web site.

I'm going to talk about what kind of information is going to consumers these days, and then I will discuss some quality approaches. I'm bringing the perspective of U.S. Healthcare. We were formed by a merger of Metlife and other groups. I'm located in the Washington, DC area. I was formerly in the Government. We are concerned with preventive medicine and demand management. We encourage people to improve their health through self-care. Our company uses many different platforms. They utilize pamphlets, telephone, video, television, and the Internet.

I've got a series of slides for you. They are about trends in the health care industry. In a recent survey, we found 58 percent of HMOs have telephone help lines. This is a rapidly growing area of consumer health information, and employers are offering it. Now, about newsletters on health: 93 percent have them in the HMO sector, and 45 percent of employers do. Self-care books are also used as educational tools. There has been a large increase in the use of self-help books. Dr. Koop has his own book out. Then, there are audiotape health messages and Internet services.

This is our own Internet product. A member can connect and find out a lot about the programs. This is where an individual can sign up with a password and find linkages reviewed by a panel, search the library, and utilize the system’s interactive capability with a nurse or counselor. We have two plans of our own that have bought this product. And our Internet address is http://www.OptumCare.com.

Here's a definition for Consumer Quality Index (CQI). It's a systematic approach -- the measurement, evaluation, and improvement in the quality of all products and services through disciplined inquiry and teamwork. I believe strongly in business units. I'm pleased to report that there is a focus on quality. Customers and buyers are into it, and DoD is very interested in the quality agenda.

The objectives of the CQI program are the highest quality of demand management services and level of satisfaction for our client, special studies, and identification of deficiencies.

These are the essential CQI program elements: program descriptions, committees or teams, clinical standards, audit tools, and an annual report.

Are there standards out there? They are lacking at this time. The National Committee on Quality Assurance standards are addressed by telephone counseling, quality management, credentialing, members' rights, and preventative health services. Through them we can get feedback on such questions as, "How are we doing on promoting flu shots and so forth?"

The areas with standards include credentialing, telephone systems, silent monitoring of calls, client records, and tracking of complaints.

Here is a sample of quality standards. We answered phones with an average response rate of 21 seconds; the quality of our nursing record was 100 percent; call satisfaction was 95 percent, and medical appropriateness was 100 percent. What has improved? Our telephone service, use of guidelines, completion of computer screens, policies and procedures, customer reports, and training. And our goal is optimal customer service and satisfaction.

Jamieson: What are you doing to specifically minimize access to records?

Harmon: We have a general information line open to the public, and we have passwords in place that must be used to gain access to a person’s home page.

Jamieson: Has the system ever been violated?

Harmon: No, not that we know of.

Jamieson: How do you know if it's been breached?

Harmon: Our vendor takes care of that.

Jamieson: Our next panelist is Margaret Gerteis.

Gerteis: I too am concerned about the rights of consumers and patients. I have been investigating this for 10 years. This is a quick mission statement for Picker Institute: to promote health care quality assessment and improvement strategies that address patients' needs and concerns, as patients define them. And, as we should know, you may think you know what patients care about, but you're likely to be wrong.

These data came from work some colleagues did. A few years ago, we were in charge of a patient survey and were interested in getting feedback . In the process of developing questions, these colleagues had to winnow it down, and we convened groups of patients and physicians to rank qualities of a good doctor. Physicians ranked as a number one priority that the doctor should be thorough. Patients ranked one that the doctor should be skillful. Most of these qualities were agreed upon by both sides as being what they wanted in the top 10. Now, let's see where they disagreed.

Included in the top 20 for patients (but not for doctors) were the following: Doctors should explain risks, diseases, and medications in language that could be understood -- and an important diagnosis should make sense.

Physicians’ choices for the top 20 (but not on the patients' top 20) were the following: that a chart should be there, that the doctor not embarrass the patient, that staff are polite, and that information is private.

Patients wanted information, and doctors tended to emphasize amenities -- things like hotness of food, convenience of parking, etc. Both agreed about skill level and competence level. We tended to find similar findings with nurses and other health care people.

Patients care about information. They want information that will help them pick providers or plans. People want to know that somebody is overseeing the availability and quality of this information. When you ask patients, they would like to try to get a uniform set of standards.

People with chronic illnesses have very different concerns. They want to know about member services. We found that the level of understanding of what services are covered is abysmal. In trying to get Medicare coverage, consumers had trouble getting through. They want to know what's covered and what is not covered. People's concerns change when they get sick.

Here are some concerns that have come up during our research. We set up focus groups across the country, and we have been working with clients over the years, and we pulled data together.

The first concern was how the system works or fails. People do not believe that there is a health care system that works on their behalf. They don't see components working together in a coordinated way, and they don't have information on basic coverage. Thirty to 37 percent don't get the information they need to go home from the hospital. Negotiating the system is difficult.

The second area of concern is information about clinical decision making. Today, I think people question more. Twenty percent of office patients and 36 percent of hospital patients got involved in decisions about their care. I will share this quote: "I didn't know before that you could refuse!" That comes from an elderly Jamaican woman. She was part of an advanced directives group and became very animated when talking about medical care. I want to show you a brief excerpt from a tape with various patients talking about their experiences with physicians.

[A tape is played with a number of people talking about questions they raised when they went to talk to the doctor, and about problems they had run into when they had tried to form a dialogue about health care with various physicians.]

Audience: Hello, my name is Keith Hewitt, I had two questions, the first about holistic medicine. You are not a holistic provider. By talking to so many people, there's no wonder there's a breakdown in communication. As a health client, if you try to read the literature that comes with a health plan, it's very difficult to break it down, even if you read it five times. Is there an effort to simplify the language in health care brochures?

Harmon: There's a big effort to make it simplified. More and more plans are going to direct access without primary care. There is an effort to explain in understandable language and put it on the Internet so people can read it there. Usually, questions come up in the home, and in the privacy of the home, a family can call the nurse with a very good set of resources. She is backed up by a reference shelf and online sources. We will look information up and call people back. Audience: It will be interesting to see what the trends will be -- how both sides develop respect.

Gerteis: You see it more widely now. In courses at medical school, they have sessions on communication. When you go into practice, you don't reinforce many of those basic skills. Specialization and fragmentation come up time and time again. A man talks about going to a number of doctors, and the doctor asks him to repeat the story even though the man brought along a chart.

Audience: When you have a panel of information, a person has family and friends and advocates. Can the system handle advocates and the person's helper? In some cases, individuals are unable to speak for themselves.

Gerteis: We do advise patients to get help. When we talked to a young man with AIDS on the video, he told us that his significant other was always welcome in the doctor's office.

Harmon: Most self-help books talk about what to do on the doctor's visit. You have to make the most out of your 15 minutes.

Audience: Can the system support such a strategy of managed care?

Harmon: That limited time can be used in the best way. There are wonderful sources out there like healthfinder™ and different media sources. I called out of the examining rooms, and they're not equipped to handle a lot of those phone calls. Calls can be screened first.

Audience: How can you get patients' needs into structure and tracking.

Harmon: Some patients are keeping their own records on asthma and such. There are online records, where patients can keep their own flow chart.

Jamieson: Now, I'd like to welcome our final group of panelists for this afternoon. The first speaker is Shannah Koss, and the subject is regulation.

Koss: Today, there are certain regulations that already apply to the type of system we are talking about developing, which will contain records that the regulatory scanner are appropriate for. I'm going to try to present the industry review. I plan to provide a customer/industry view of why the addition of regulation of consumer health information systems would do more harm than good. We heard the Vice President's remarks at the conference. We're looking for accurate, timely, relevant, unbiased information. Does this exist today?

In improving the system, do you want automated or unautomated capabilities? Is decision support software different from health care information? Not much. The same information could be ferreted out if you are diligent and have lots of time. In today's health care environment, the individual is expected to be informed. We are at risk if we think one person is giving us all the information we need.

Which regulations do apply? Labeling requirements for drugs or devices are regulated by the Food and Drug Administration. Advertising for prescriptions is considered an extension of the label, and other advertising is judged on the basis of its being truthful and not misleading. Civil liability law is also present (that applies to either products or procedures), as are restrictions on medical practice without a license.

Do we touch on the regulatory standard appropriate for decision support? I would say no. Information and the practice of medicine are not held to this standard, and because safety and effectiveness are generally driven in a very formal, narrow research context. Many interpersonal sources are sought because of the inadequacies of the current system, such as self-help groups, and support groups. Consumers are the ultimate decision makers regarding their care and seek community input on a broad set of factors related to this care.

Placing consumers as decision makers raises the question of what is the evidence of risk? We haven't heard what evidence there is of risk.

I think information technology brings new power to the consumer. Navigational tools can make a person feel comfortable and can be tailored to the individual, with greater accuracy than any one provider can give.

So what is IBM doing? It sees information technology as an enabler -- we're not in the health care information business. Our consumer health care offering is for sponsorship organizations (managed care or employee).

Turn to Allina and see what they've used, including the Healthwise handbook, nurse info-line, health risk survey, provider directory, benefit plan information, and classes and seminars.

What are the unintended effects of regulation? If the Government takes a heavy approach in this area, companies will not invest in the long-term research level. That would be one of the greatest losses. It would be very paternalistic and would deny information, and it would restrict one of the cost-effective approaches to care. It also fails to recognize alternative information resources for today or tomorrow.

With diseases like AIDS, information is most critical to the patient. Consumers can help drive medical development, and market forces can address quality and often do -- as is seen with products like consumer reports, guidelines, and healthfinder™.

Jamieson: Our final speaker is Dr. Joseph Henderson.

Henderson: I'd like to focus on the situation where regulation is heavy and look at what might be coming. To define it in terms of web sites is limiting in my opinion. I am going to focus on areas where there are significant concerns on the impact of the quality of life of a person who might be carrying a baby, or any individual. If my 7-year-old has an appendicitis, or if I have breast cancer, the decision of what choices to make and where to get the information to influence me is a serious decision.

The delivery of information and education is via media, and by media I mean interactive access to information, ideas, or experiences. Now that's experience, not just information.

Regulation if enacted must be applied at all levels of program development. Let me characterize the "regulees." They are a diverse, motley group. They range from one person to a multiparty system. They are motivated by passion or money. They do their communicating with text or they are developing more complex forms of media. They may be very knowledgeable or not. They may have lots of time or not. They may have the will to create informed sites or not.

We now have a mature art to create moving, communicating experiences. We can provide interactive learning that is the best that media can offer to help patients understand complex concepts. On the other hand, these powerful media tools can be used to coerce, confuse, or promote propaganda. Other industries have interest in this. Health care is no stranger to this. Network capacity will create a programming vacuum. Great care must be taken to make sure information provided to decision makers is as unbiased and objective as possible. Development must include some evidence that what is imparted is doing no harm, and is actually doing some good. Even when circumstances are optimal, problems remain.

Scientific, rigorous evaluation is expensive and time consuming, sometimes exceeding costs and the time limit of the system itself. If funded as part of a commercial venture, it may end up a flawed product. This would be true even if the product were outstanding. One must strike a balance between quality and the practical constraints of this domain. Proposals to ensure excellence must carefully consider these and other realities. This requires a development environment.

A panel on interactive media and communications is trying to make some sense of this environment. Here are some thoughts I have with regard to that.

I assert that in the great majority of cases it is unwise to view evaluation of interactive health communication media as a scientific process. There are in most cases no hard points, mostly feelings and opinions. There are other methods adapted by researchers that have been developed. The randomized control trial is not appropriate. In some cases it is very difficult -- it may ask, for example, did you get the mammogram, versus what was the quality of mammogram? That's a much harder question.

Regulation would require clear criteria, must have clear results, and would have a means of assuring accuracy of content. In setting up guidelines, there is the question of what criteria we would establish for what type of care -- are we talking about Western medicine, holistic medicine, or what?

In the end, the answer is not to regulate. There is a role in policy in ensuring that well-intentioned providers have tools to work with -- a set of practical guidelines for developers. Developers would greatly benefit from applied research in the form of procedures of software tools, application of funding, and other development. It will yield generally useful knowledge. Simultaneously we must think of ways to apply those systems to the future.

Jamieson: So is anyone in the audience for regulation?

Audience: I was prepared for some argument, but I agree with both speakers. What I find very difficult is that there's really no difference between what you are describing and what you have today. When I go to the bookstores, I see "Drinking Man's Diet" and "Our Bodies, Ourselves." The people who want to regulate in certain unnamed areas do not differentiate between software and literature. Why apply different standards to web pages than you do to books?

Henderson: In my opinion, there is a big difference from the consumer's point of view. The difference is the book is completely open, and you can see everything in it. The computer program is not open in all areas, and not clear for users and, sometimes, for engineers. It's a very different technology and a very different way of presenting information. In a book, it's clear if it's well done, even though you may disagree over ideas. The difference between reading someone's opinion in a book, and opening up a web page with experiences, pie charts, and everything else, is tremendous. There is more bandwidth. It is so much bigger than a book. The impact of images and such are more unknown.

The other aspect that isn't in a book is the ability to tailor information the way that you can on the Net. Now we have to gather data from clinicians, patients, and other sources, and if we miss some key in development, then program information could be flawed. The designer could make mistakes.

Koss: I think consumers are very skeptical. It's very similar to TV, video, and such. One important distinction is there are a lot of books that are basically opinion, basically inaccurate. And that information will touch somebody, or will influence somebody.

Jamieson: I don't think it's fair to compare a bad book with a bad piece of software. I think it's better if you compare a good book with a good piece of software. The interactive medium can let me access at any level if done well. In a book, that information is collated in a certain way. Unless you are an academic and can do that, you have to depend on someone to do it for you. You have to know how to use the glossary. The interactive environment can give you a glossary and can help you define words.

Audience: In the interactive world, it becomes very difficult for people to see what is advertising and what is not.

Audience: It doesn't really matter as long as the producer is held liable. So I don't know how you want to get in the way of regulating that. It's hard to tell who's liable on the Internet.

Koss: Persons are held liable if they cause injury, not if they throw out bad information. There are areas where there is and should be regulation.

Jamieson: It's Similar to the issue of freedom of speech. What do you do about bad speech -- you don't ban it, you put up good speech. It's the same with the Internet. You have good sources of information out there. They've had this debate before each time something new comes out. Let people have access to a broad spectrum.

Henderson: The problem is that there used to be a buffer of time. Now I've got links and hyper access. It happens so fast, with no buffer, no time to reflect.

Audience: It lends itself to a very straightforward quality theme. The better health information sites over time will find it to their advantage to have some sort of approval. Is that the direction we're going in?

Koss: That will naturally evolve. There will be entities that will evolve like healthfinder™.

Jamieson: There will be bases of information and places that you go to, and the information providers will be careful with their links. Institutional places of access will show up.

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