1997 Partnerships for Networked Consumer Health Information Conference

Summaries of Plenary Sessions and Breakout Sessions

Luncheon: Health Information, Support Groups and Self-Help Communities in Cyberspace

Wednesday, April 16, 1997
12:00 - 1:15 PM

Moderator: Tom Ferguson, MD, Senior Associate, The Center for Clinical Computing, Harvard School of Medicine

Statement of the Subject

Consumer health informatics can be divided into two sectors: Community-based Consumer Health Informatics Resources, services available to anyone with a computer and a modem; and Clinically-based Consumer Health Informatics Resources, systems provided to a limited population of patients or clients, usually by an HMO or other health care provider organization.

Key Issues

Online communities now exist for virtually every medical concern, from breast cancer and chronic fatigue syndrome to being the parents of a child with Downs syndrome. There is much to be learned from them. Within these online communities, self-helpers share information and advice about good and bad doctors, good and bad medical centers, and about current clinical trials for their shared problem. They give each other advice on how to get the most from their doctors, and how to persevere with a difficult medical or family situation.

The conversations self-helpers conduct within these communities constitute a new and important medium which may be more effective in providing the information and connections they need than any other medium developed to date, including pamphlets, books, articles multimedia CDs, videotapes, databases, and most Web pages. Within these groups, a great deal of technical medical information is exchanged. But there is a second level too: practical skills and management techniques. There is a third layer as well: participation in these online communities helps ease feelings of isolation and discouragement. Indeed, it often seems that, as one deeply depressed self-helped once posted, "No matter how bad it gets, there's always time to help someone."

Online self-helpers are nudging us in the direction of a whole new role for the online medical professional. Clinicians who work with these online groups learn to wear a different hat. Their appropriate role, as the self-helpers often like to say, is "On tap, not on top." They serve these groups as coaches, as teachers of self-management skills, and by answering technical questions. The health professionals who become deeply involved in this realm typically go through a process of rethinking their assumptions. It's quite a shock the first time you have a patient who knows more than you do about his problem, but you soon get used to it and come to appreciate it.

Self-helpers have a rather low opinion of many of the online resources which health professionals get most excited about. They will often dismiss reference to such linear text, professionally-generated materials as "shovelware.". They are often uncomfortable with some of the basic medical language which professionals take for granted—words like "patient" and "compliance" and "victim" and "doctor's orders." The professionally-centered world view these words imply rub many online self-helpers the wrong way.

Roles, Responsibilities, and Underlying Concepts

The shift from Industrial Age Medicine to Information Age Health Care will involve something more than just taking our current patient education pamphlets and putting them up on the Internet. Thinking that we could simply substitute one medium for another without deep structural changes is like thinking that the shift from rail to air transportation would simply mean landing all those 747's in Grand Central Station.

If our old map of health care was the familiar pyramid divided into primary, secondary, and tertiary care, the new map of Information Age health may well be that same triangle flipped upside down, with the broad base at the top and the narrow point at the bottom, divided horizontally into the six layers of information age health care running from top to bottom as follows:

• (1) individual self-care;
• (2) friends and family;
• (3) self-help/community networks;
• (4) health professionals as facilitators and coaches;
• (5) health professionals as partners; and
• (6) health professionals as authorities.

We will have arrived at true Information Age Health Care when we all take it for granted that the primary practitioner in our health care system is the informed, empowered online layperson, and that the main role for health professionals will be as coaches, teachers, supporters, and cheerleaders for system wide, computer-supported high-quality, low-cost self-managed care.

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