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  Doctom's FAQ:
What is Consumer Health Informatics?

Q. I've been hearing a lot about 'consumer health informatics' recently and have heard that it was you who first defined the field. How did this term originate? And how should it be used?

A. As far as I can tell--and I'd welcome input from others on this--I came up with the term Consumer Health Informatics in 1993, when my colleagues by Don Kemper, Bill Hettler, and I organized a conference which brought together some of the early pioneers who were developing IT systems designed to be used by health consumers. That conference, "Consumer Health Informatics: Bringing the Patient into the Loop," took place on July 16-18, 1993, in Stevens Point, Wisconsin. It was sponsored by Healthwise, Inc., and the National Wellness Association.

Participants included David Gustafson and other members of the CHESS team from the University of Wisconsin, Warner Slack, of Harvard's Center for Clinical Computing, Richard Rockefeller from the Health Commons Institute, members of Kaiser Permanente's interactive Technologies group, the health honchos of AOL and CompuServe, representatives of AHCPR and the Office of Disease Prevention and Health Promotion, entrepreneurs from several of the early for-profit CHI companies and other assorted developers, academics, providers, do-gooders, and policy wonks. Patricia Brennan was unable to come, but contributed a paper to the proceedings. As far as I know, the first appearance of the term in print was in the conference brochure and proceedings

Q. Didn't you also do a session on consumer health informatics at the 1993 Annual meeting of the American Medical Informatics Association?

A. On October 31, 1993, Warner Slack and I presented a half-day tutorial entitled "Consumer Health Informatics: Bringing the Patient into the Loop" at the AMIA annual meeting in Washington DC. Charles Safran, who was organizing the AMIA meeting that year, made a special point of inviting presentations on IT tools for patients. As far as I know, the first use of the term in AMIA records was the announcement of that tutorial and the first AMIA publication on CHI was the manual Dr. Slack and I prepared for that session.

Q. Did that AMIA manual include a definition of the field?

A. It included a summary of the Wisconsin meeting that began as follows: "A new generation of medical computing systems will serve the patient, not just the doctor. At a recent meeting, a panel of consumer health informatics experts predicted that these new systems will become an important part of our current effort to reinvent health care, turning patients into providers and providing customized health information at the touch of a button." It also included the following definition: "Consumer Health Informatics (CHI) is the study, development, and implementation of computer and telecommunications applications and interfaces designed to be used by health consumers."

Q. Why do we need a separate term for systems designed to be used by patients? Isn't this just a part of medical informatics?

A. One of the most interesting things about consumer health informatics is the way it holds a mirror up to our usual patterns of medical practice. Understanding CHI as, at least to some extent, a different discipline, can help us recognize and understand some of our own assumptions about the nature of medical care. Developers with a strong bias for what we might call the "health professional-as-active-responsible-and-in-control vs. the-patient-as-passive-not-to-be-trusted-and-out-of-the-information-loop" approach have a hard time truly envisioning healthcare from the end user's point of view. Yet it turns out that in order to develop effective CHI systems, this is exactly what one needs to be able to do.

Q. But don't some developers use "consumer health informatics" in a very different way?

A. Many of the efforts which have been labeled CHI are actually IT tools for health professionals which happen to have consumer interfaces. But attempts to build high-tech systems which embody professionally-centered models (e.g., physician-centered patient education, or automated attempts to achieve compliance with doctor's orders) may lead us down expensive and unproductive blind alleys.

Q. What are the developers of such systems missing?

A. The fact that the roles of both providers and patients are changing as healthcare moves online. Millions of sophisticated online consumers are already conducting self-directed and self-evaluated information searches. And in addition to the C-to-I (consumer to information) aspects of CHI, there are already a number of impressive and important C-to-C (consumer-to-consumer), C-to-P (consumer-to-provider) and C-to-S (consumer-to-software) domains, each demonstrating fascinating and unpredicted dynamics. Empowerment-based tools for end-users already exist, and there is much we can learn from studying them. Systems which do not fully support the empowered consumer typically experience the dreaded 'end-user failure'--consumers do not like them and will not use them.

Q. So what term *should* be used for IT-based professional interventions with consumer interfaces?

A. The best and the brightest of the new Net-savvy patients are already managing their own care to an extent that would have been unthinkable five years ago. It might thus be more helpful to classify systems which are primarily designed to empower or extend providers under the appropriate public health or clinical care sections of medical informatics, and to reserve the term consumer health informatics for systems which seek to empower the end-user as capable and autonomous (or at the very least, potentially capable and autonomous) healthcare players in their own right.


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