Health Care in Cyberspace: Patients Lead a Revolution

By Ferguson, Tom | The Futurist, November-December 1997 | Go to article overview

Health Care in Cyberspace: Patients Lead a Revolution


Ferguson, Tom, The Futurist


Some patients are finding more help in cyberspace than in their own doctors' offices. A physician explains why and discusses exciting new directions for the future.

Patients - not doctors - are leading a revolution in health care by establishing self-help communities in cyberspace. These online networks - each devoted to a single health-related topic, from AIDS and anxiety to wheat intolerance and yeast infections - provide technical medical information, practical coping tips, emotional support, and online second opinions. And they encourage patients to play a highly responsible role in their own care.

These online support communities are available to anyone with a home computer and a modem. Most are free, and many include volunteer health professionals who are experts on the condition being discussed. Group members may communicate in one of several ways: via an electronic mailing list, on USENET newsgroups, on health forums on America Online and CompuServe, or via the message forums now springing up on many of the more than 25,000 health and medical sites currently available on the World Wide Web.

The veteran online self-helpers of today, who check in with their regular online communities several times a week, suggest the ways that millions of patients may use these resources in the not-too-distant future. They spend much of their time online exchanging experiences, opinions, information, and mutual support with others who share their special health concerns. And online self-helpers frequently create new mailing lists and Web sites.

Reinventing Health Care

The list of topics that serve as the focus for these communities does not correspond to the chapters of a medical textbook. Online consumers are reinventing health care in their own image. The groups you'll find online cover topics ranging from depression to gambling addiction, from bereavement to dieting for seniors. The names of the groups often sound more like social clubs than like the standard medical specialties. Some groups meet "live" in a virtual online "room." Others post their messages on a central forum, bulletin board, or newsgroup for others to read at their convenience.

Those in need of support often get a rapid and high-quality response in cyberspace. "Jack in Utah" turned to a death-and-dying support group on CompuServe after his son's accidental death. He poured out his heart, sharing his story and his grief - and received dozens of replies over the following 48 hours.

The group advised him to avoid alcohol and drugs, to continue therapy sessions even though they were quite painful, to seek help through his religious faith, and to make a pact with his wife to be extra kind to each other. Members of his group supplied strong empathy and understanding because they were all dealing with similar issues in their own lives.

When I presented Jack's experience at a recent medical conference for psychologists and psychiatrists, a group of senior therapists concluded that Jack had probably received better advice and support from the online group than he could have gotten from any health professional. Despite their training and concern, they felt that they would not have been able to help him in such an immediate, compassionate, and practical way.

The Brain Tumor Mailing List

People who first come to online communities to find help for themselves often stay on to help others after their own problems are resolved. Samantha Scolamiero was a college student in her early 20s when she was diagnosed with a massive brain tumor. She had a difficult time finding the information she needed to make good decisions about her care, so after her recovery she decided to create an online resource called BRAINTMR (The Brain Tumor Mailing List), using a computer at the Massachusetts Institute of Technology. She hoped that the list would serve as a way for people concerned with brain tumors to exchange information and experiences. …

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