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Eric Boberg's presentation for July 10, 2000 NCVHS Hearings

Comments on the Personal Health Dimension
National Health Information Infrastructure

July 10, 2000

Eric W. Boberg, Ph.D.

CHESS Project Director
Center for Health Systems Research and Analysis
University of Wisconsin-Madison
Room 1122 WARF Building
610 Walnut Street
Madison, WI 53705
608/262-8758 (phone) 608/263-4523 (fax)

The National Health Information Infrastructure is an ambitious and visionary plan for utilizing the rapidly developing information technologies to improve our nation’s health and well-being. The Interim Report we are discussing today is an excellent first step in summarizing the issues, concerns, barriers, technologies and investments, necessary to realize this vision. I have been asked to provide comments and suggestions specifically on the Personal Health Dimension of the Report, although much as the Personal, Provider and Community Health Dimensions overlap, so will my comments have relevance to all three domains.

For the last 10 years, I have been privileged to be part of a team at the University of Wisconsin, led by Dr. David Gustafson, which has been developing and evaluating a patient-centered Interactive Health Communications system called CHESS (the Comprehensive Health Enhancement Support System). Much of what we’ve learned in this effort has direct relevance to the issues that will be faced in developing and implementing the National Health Information Infrastructure, and especially its Personal Health Dimension.

The barriers to erecting the National Health Information Infrastructure are enormous, and I would concur with the report authors that the technical barriers will be the least difficult to overcome. The vision proposed is by no means evolutionary. Indeed, it is somewhat more than revolutionary, since to achieve it will require multiple concurrent revolutions on the part of all those giving and receiving health care. Successful implementation of this system will require addressing barriers in care recipients, care providers, and in technology itself.

The first revolution needed is in the American public who would use this system. Key barriers to overcome in this domain include the following:

Privacy Concerns: Health information is one of the most personal of all types of information available, and the concerns that have to be overcome are both real and imagined. Clearly folks with HIV infection, or other diseases that put them at risk for losing employment, or other types of discrimination have real fears about confidentiality that need to be addressed. And, truth be told, most of us probably have something or other in our medical history we might not want everyone in the world to know. These very real concerns about safeguarding the privacy of this enormously complex data structure need to be addressed. But just as important, is the underlying fear of what kinds of security breaches MIGHT be possible, not simply what is possible. In order for this system to be accepted, the American public will have to BELIEVE that their health data is secure from prying eyes. These fears are especially prevalent in underserved populations who don’t really understand information technologies and how they work.

Raising Health Consciousness: Health consciousness in most Americans, when it exists at all, is literally skin deep. It generally extends only as far as we look and feel, and is more related to attractiveness or comfort than actual health. To be effective, the Personal Health Dimension would require most of us to demonstrate a significantly increased awareness of, and investment in, health on a day-to-day basis.

Denial: Most of us who are reasonably healthy have a tendency to avoid looking too deeply into our health issues on a regular basis. It raises too many issues about our own mortality. Even those faced with a serious health condition have a natural tendency towards denial as a coping mechanism. For the Personal Health Dimension as envisioned to be effective, people would have to confront that denial. While this may be healthy, it most assuredly won’t be easy, and strategies will have to be developed to minimize the opportunities for unhealthy denial, and provide incentives powerful enough to overcome this basic psychological defense mechanism.

Increasing Personal Responsibility: There is a strong tendency in many segments of our society, sometimes conscious, sometimes not, to avoid personal responsibility with regard to our health. Often, we want to eat junk food constantly, and then simply go to the doctor to be “fixed” when something goes wrong. This is something most all of us need to face. For example, I was recently diagnosed with tennis elbow. I happily went to the ionophoresis treatments, which were easy and painless, and dealt with the worst of the symptoms. But I have been remarkably non-compliant with the recommended stretching and strengthening exercises. On most days, it’s just easier to put up with the discomfort than take time out today to obtain a longer-term benefit. Related to this, many – though not all – of us often simply want to be told what to do when a problem arises. After all, doctors are the experts, not us. Shared decision-making is a relatively new phenomenon in our medical culture, and still not widely practiced. While the Personal Health Dimension can be a powerful tool in accomplishing increased personal health responsibility, the lack of such responsibility currently is a large barrier to the realization of the vision.

Cultural Diversity: Who do we design this system for? Upper middle class white, college-educated folks? A reasonable place to start, perhaps, but it better not be the place we finish. We are a nation of many different cultures, and each one of these cultures deals with health issues differently. Some don’t talk about health issues. Ever. Others are information seekers, or value alternative or complementary approaches, rather than Western medicine. If the National Health Information Infrastructure and its Personal Health Dimension are to be widely accepted, we must find a way within it to address this tremendous variety of health care beliefs and practices, otherwise the system will be useful only for the relatively small segment of the population for which it was designed.

Successful implementation of the Personal Health Dimension also requires a revolution on the part of health care providers. Key barriers to overcome in this domain include:

Changing Practice Patterns: Implementation of the National Health Information Infrastructure will require significant levels of behavior change in both individuals and institutions. Making these systemic changes can be extraordinarily difficult. Even small changes in practice patterns can be extremely difficult to introduce, given the time and money pressures faced by health care providers today. One surgeon who has worked with CHESS for years, helped to develop and review its content, and who believes deeply in it, almost NEVER remembers to refer patients to us. There is simply too much that has to be crammed into a short encounter. And while the end result of implementing this system may be desirable, the path to get there may be impossible to see, as practices attempting to move from advanced scheduling to “just-in-time” visits are experiencing. A well-thought-out and manageable “How to get from here to there” implementation strategy will be critical to acceptance of any new system.

“Doctor as God”: Fortunately, this syndrome, also know as the Marcus Welby syndrome, appears to be dying a well-earned death. The tendency on the part of many physicians to want to control the information that patients are given, and make decisions for them was never a healthy one. The activism of HIV patients in the ‘80’s, and the explosion of information available in the ‘90’s has – hopefully – dealt this mind-et a mortal blow. Still, it will take some time, perhaps even a generation, for it to go away completely.

Ownership of Health Information: Resolving this thorny issue will be central, not only to the Personal Health Dimension, but to the entire National Health Information Infrastructure. Most of us like to avoid this question altogether. Another excellent example of denial. As patients, we tend to think this information is ours. But providers often tend to think of it as theirs, and in a commercial marketplace, often justifiably balk at letting patients take “their” test results to another, perhaps competing provider. Thus, in a system of interlinked health information databases, we will need to address a lot of difficult questions about who owns what and who has access to what, and under what circumstances.

Another set of barriers might be broadly characterized as relating to technology, both development and implementation:

Digital Divide: This is not news to any of us in this room. One possible, perhaps even likely, outcome of the explosion of information technologies is an increase in the health, wealth and power of the “haves,” leaving the “have-nots” even further behind than they already are. In developing new technologies, it is natural to begin with the easiest case, which in this country will usually be something that will work for well-educated English-speaking people. There’s nothing wrong with that. It’s what we do next that should concern us. After we have a first-generation system, we have a choice: adapt that system for the “harder,” less advantaged populations, or take advantage of improving technologies to create a second-generation system with more bells and whistles. The merest glance at the Internet tells us which choice the vast majority of us make. The dearth of high-quality health-related sites for Hispanic-, African-, Asian-Americans and other minorities is an embarrassment to all of us working in this field. There are few enough sites that even translate health information into languages other than English. Health-related sites designed to be culturally appropriate for minority cultures in this country are virtually non-existent. Thus, we create a self-fulfilling scenario where the underserved do not use Information technologies because they are not culturally relevant, and we do not target those communities because they do not use what has already been created, and thus, there is no “market.”

Tailoring: Our nation’s diversity is not just reflected in the socio-economics of the so-called Digital Divide. We also see it in our tremendous variety of cultural backgrounds, learning and coping styles, etc. If we have learned anything from the public health campaigns of the last generation, it is that untailored, mass-market approaches produce minimum benefit. The more highly-tailored and personalized a program is, the more effective it is – and almost always the more costly. Thus, in designing the Personal Health Dimension, we should conclude that the easiest system to build, “one site fits all,” will be the least effective. If we want a system to be effective for large segments of the population, we must find a cost-effective means of tailoring the system to the cultural, educational, and socio-economic characteristics of each user. Yes, it will cost far more, but money spent on a system no one uses will be costlier still, in the long run.

Getting Started: Another barrier faced by many types of systems is the time involved for a user to get started and get comfortable with the system. I have personally tried a number of software programs designed to compile my health history, and in every case, I’ve bumped up against the wall of tracking down the data on vaccinations, family histories, etc. It’s not that I’m not interested, it just requires a lot of work, and in the hectic day-to-day chaos that is our lives, trying to figure out when by last tetanus vaccine was, from a doctor in a town I lived in three moves ago, is not a high priority. And while this is exactly what the Personal Health Dimension is meant to overcome, the initial set-up for most of us could well be time-consuming and difficult.

Technology Creep: One often-overlooked barrier in developing an innovation like this one is technology creep, although the term creep has clearly become a misnomer. In the 10 years we have bee working on CHESS, we have been through three separate operating systems, and more than half a dozen complete overhauls of the interface. Fundamentally, our system is not all that different than it was in 1992. But the system becomes almost a living thing that evolves in three different dimension simultaneously: services, information content, and underlying technology. All three need to be addressed and balanced to keep the system alive and well.

Now that I have probably depressed everyone in the room, I’d like to say that there are ways of overcoming all these barriers. It won’t be easy, and it almost certainly won’t occur overnight. But revolutions do occur. The concept of aseptic techniques in surgery took years to gain acceptance, although it looks to us in retrospect like a no-brainer. But it did win out over the skeptics. What acceptance of this system will require is a multi-pronged strategy, tailored to the needs of the stakeholders involved. Here are some thoughts and observations on reducing or removing these barriers, based on what we have learned from 10 years of implementing and disseminating CHESS.

Find Strong Leadership: I can’t overstate the importance of high-profile leadership. It is an overused analogy, but President Kennedy’s championship of the Apollo moon landings was the only thing that made that extraordinary technological achievement possible. Similar leadership, especially from the political establishment will be required to convince patients and providers to tolerate the enormous difficulties and costs that will be associated with implementing this system.

Create Demand: In many ways, this is a simple, if huge, marketing issue. Part of the strategy for “selling” this idea must be a means of creating a strong enough demand for the system. Some demand exists today, but it is probably not nearly enough. Like a good commercial venture, we must learn how to create the demand for this product, much as Nintendo has created an insatiable demand for better and better video games.

Utilize Diffusion of Innovation Theory: Everett Rogers’ book on Diffusion of Innovation should be at the bedside of everyone involved in the development and planning of this system. Much is known about how to successfully create and disseminate new systems like this, and there is no need to recreate the wheel. We do need, however, to be willing to learn lessons from the commercial marketplace on how to be successful.

Utilize Behavior Change Theory: Much has been learned in recent years from the behavior change work of Jim Prochaska and others. The proposed system will involve a LOT of behavior change on the part of both patients and providers, and the strategies for encouraging those behavior changes need to be developed in parallel with the system, indeed, they almost certainly will need to be an integral part of the system, not something tacked on at the end.

End Users Must Be Involved at ALL Stages of Development: If this system is going to be successful, the end users need to be heavily involved at all stages of development. In the beginning, we need to understand what THEY want and need in such a system, we need to develop prototypes that meet their needs as well as ours, and we need to test those prototypes all through the development process. Because no matter how good a system may look to us on paper, if it does not meet the needs of the end users, and it is not attractive and easy to use, it will merely gather cyber dust.

Respect Cultural Differences: The ultimate system that is developed MUST respect and respond to the cultural diversity of the American public. It is of minimal benefit to society to develop a system that meets only the needs of any particular subgroup, whether that is college educated white people, or poor inner city minorities. The system needs to appeal to a very wide audience.

Tailor Whenever Possible: Tailoring is both a barrier and an opportunity. Broad appeal will probably be possible only through extensive tailoring. The system that I use will almost certainly need to look significantly different from that used by a Cuban refugee or a Native American living on a reservation. Obviously, such a complex system will be much more costly than a “one-size-fits-all” model. But if we as a nation are not willing to make such an investment, we might as well not even get started, because we won’t be benefiting anyone except those who need help the least.

Create Incentives, Short-Term and Long-Term: At a much more basic level, all those we want to use this system must have strong incentives to do so. Not just living longer, which is too abstract a concept for many of us. But “why should I go to all this trouble now?” And again, just as we have tremendous cultural diversity, so will we need a wide variety of incentives, in order to effectively engage a diverse population. Another reason to keep the end users involved, because only they can tell us what the most effective, and cost-effective incentives will be.

Create a Dynamic System: Such a system as we are envisioning will be out of date by the time it hits the streets. Sad but true. The pace of technological advancement today far exceeds our abilities to harness it. Thus, the system we design must be dynamic and changeable, or it will be a dinosaur of immense proportions. It will, in most senses of the word, be a living entity, which requires much care and feeding. And when we create it, it will be very much an infant, that must be able to grow and develop over time.

In short, although the opportunities for failure in this project are virtually infinite, the formula for success is fairly straightforward. The system must be easy-to-use, dynamic, and responsive to the needs of a wide variety of users. To achieve this, we absolutely MUST, MUST, MUST involve all the stakeholders at every stage of development. A system designed by computer and medical records types will be dead on arrival. The conversation we must engage in requires the participation not only of the technical folks, but also sales and marketing folks, academics who have studied how people and innovations operate, and – and I cannot stress this enough – the end users. They must buy in to the concept, and its implementation. And the only way that can happen is to have them intimately involved in every facet of the project, from start to finish.