Once patients were not aware that they could participate with their physician to better treat their health conditions. They were on their own in a maze of health decisions. Like a great many internet users today, when Jerry, Rick and Sandra went online, they wanted the latest health information. Consumer books and articles are out of date long before they get to the market. They each sought reliable, organized consumer health information so they could make good health choices.

One day, soon, they will have considerable help. The "Networked Health Consumer Conference held recently in Rancho Mirage, California, brought together developers of health information tools to offer a beacon of hope to all of us in the grips of a rapidly changing health care industry. Sponsored by the US Department of Health and Human Services and the Annenberg Health Center, the conference focused on health information that supports prevention, patient education and the management of health and disease. These prevention and wellness interventions especially target high maintenance health users, such as mentally ill, seniors, diabetic, HIV and cancer populations.

The opening session by Tom Ferguson, MD featured the empowered health consumer and his online domain, existing in very much a self-help community. Ferguson struck a chord with most other conference presenters whom, invariably, referenced his talk. This platform communicated a respect for consumer self-help information producers as they reach out to help each other on online message boards, mailing lists, self-help groups and information forums and services. In an online environment, they did not compete with the differing fare offered by professional counterparts.

The approximately four hundred conference participants represented health organizations, public health services, hospitals, and universities whom have plunged into consumer health programming. Their products are intended to help health care consumers manage their health with varying degrees of personalized, tailored services. These health information services and products can be differentiated by clinical and consumer use: -Clinical use. Medical information technology consists of medical self-care computer programs and interactive software that are intended to augment professional care.

Examples of medical self-care projects are home health workstations, medical decision support, diagnostic spreadsheets, and short-term therapy. -Community consumers. People have unanswered questions about their health and health information producers from health organizations, universities, and medical libraries bring their expertise to provide answers and support. They offer voluntary or professional online resources, computerized information, and phone services. In addition, integrated, packaged services have sprouted. These are multimedia online or cable television health villages, health malls, health worlds, or clinic waiting room health programming on television. Telecommunication giants AT&T, IBM and the online commercial service providers America On Line and CompuServe dominate the fully integrated services with multimedia entertainment. Time-Warner (1995) has packaged former Surgeon General C. Everett Koop's credibility in a manual with dozens of health videos available. Dr. Koop advises, "knowledge is the best prescription:". If someone is willing to pay, health information will reach us.

With all these health information possibilities on the drawing boards, who will remain players when the pie is divided? Health information sellers and integrated packaged services must target insurers, health organizations and managed care industries. These potential financiers are most motivated to reduce health care spending. Whether or not health information products succeed depend on a bottom line steeper than cost. It demands a huge bounty from the user. With these products, will your health improve?

Three unanswered questions remain.

• First, with all this information, how do we know what is good information. How will we teach people to evaluate the quality of information they find? Will we rather, confuse the public with volumes of undistilled information?

• Second, will online technologies change poor lifestyle habits when other media efforts have failed? We will still have yet to evaluate these technologies on a large scale to determine if they work for the intended populations.

• Finally, how will we implement the new health technologies? The Medical Library Association president, Carla Funk, contrasted the emphasis on costly entertainment value (employed by the AT&T, IBM and others). Instead, she reminds us that in spite of extensive entertainment packaging, "people become engaged when their health is on the line". Libraries offer no frills, rich data links to community groups and splendid health information online.

Gary Gunderson, Director of Operations, Interfaith Health Program, the Carter Center, focused on the sector that will not entirely be reached by expensive, high tech methods. Gunderson advised us to concentrate less on "data driven analysis" and more on moving sick, marginalized persons back into community. To do this, he says, "we must demonstrate someone cares".

Tell your friends who are not online, not to worry. Right now, in selected communities, voice mail message services are available to the homeless, modem connected message boards to Alzheimer's care givers, and self-care computer programs to HIV and breast cancer patients. Thousands of people are pilot testing health forums on interactive television. In the not too distant future, when technology becomes invisible through phone lines, self-care, support groups, and health information will be a huge industry.

On the way to the airport, one conference participant commented, "it was great to see where we are going, the cutting edge. For my community hospital setting, it's the future. How will this apply to the end user? The patient needs answers now to their health questions. With access to the Internet, Jerry Rick and Sandra and a cast of thousands are online, right now, to help guide you.

To find this website, please go to our Resources Department. From there, go the Consumer Websites and scroll down to "Self-help". There you'll see the '96 Conference Proceedings.

Resources:

Tom Ferguson, MD, Health Online, How to Find Health Information, Support Groups, and Self-help Communities in Cyberspace, Addison-Wesley Publishing Company, Reading, Massachusetts, (1996). Ferguson invites the reader on a personal tour to discover his fascination, with the online world.

The Illinois Self-help Coalition
Wright College
3400 N Austin Avenue
Chicago, Illinois, 60634.

5/28/98

Daryl Holtz Isenberg, PhD discovered self-help groups in 1973 when a family member had cancer. Isenberg received her doctorate in 1981 from Northwestern University, Evanston, Illinois. She was the Executive Director of the Evanston-based Self-help Center from 1985 -1995. Isenberg is founder and president of the Illinois Self-help Coalition. She can be reached by: Phone 312/481-8837, FAX 312/481-8903.