The Wall Street Journal today has an article entitled, The Growing Clout of Online Patient Groups by Laura Landro, that brings to light the power and reach of grassroots patient groups:

Online patient groups have become an increasingly powerful force for health-care consumers over the past decade, raising funds for research and offering patient information and support. Now, as the cumulative power of their memberships grows, these groups are becoming invaluable partners to researchers and physicians searching for cures.

Patient groups are stepping up their participation in medical and public-health research and entering far-reaching collaborative efforts with researchers, scientists and drug developers. They are raising funds and taking part in studies to evaluate the impact of online patient sites. They are even conducting their own studies on side effects of medications, and working with researchers to recruit clinical-trial participants, provide DNA samples and start tissue banks.

Although they have been around online for over 20 years, I think they’re becoming more well-known as companies and researchers turn to them for expertise and help. Informed consumers, e-patients, are a growing subset of patients who not only want to be partners and collaborators in their own health care, but often are their own best experts. They know their disease and the latest treatments more than the docs that treat them, and talk with other like-minded patients to exchange ideas, support, treatments, research findings, and more.

To spur more widespread collaboration, a group of experts in patients’ use of the Web just launched a new Web site and blog, e-patients.net, originally developed by Tom Ferguson, a physician who received funding from the Robert Wood Johnson Foundation and the Pew Charitable Trusts. Following Dr. Ferguson’s death last year after his own 15-year battle with multiple myeloma, his cohorts completed his study, “e-Patients: how they can help us heal health care,” which is available free on the site.

I’m a part of this group and encourage you to check out e-patients.net and follow the blogging effort we’re doing over there. We’re clearly on the edge of a whole new world in our health.

Dr. John Grohol is the CEO and founder of Psych Central. He is an author, researcher and expert in mental health online, and has been writing about online behavior, mental health and psychology issues -- as well as the intersection of technology and human behavior -- since 1992. Dr. Grohol sits on the editorial board of the journal Cyberpsychology, Behavior and Social Networking and is a founding board member and treasurer of the Society for Participatory Medicine.

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    Last reviewed: By John M. Grohol, Psy.D. on 13 Jun 2007
    Published on PsychCentral.com. All rights reserved.