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.
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One Comment to
“The Power of the People: Patient Groups”
Thank you for the heads-up on e-patients.net. I will definitely check this out.
I think peer support and patient groups are important tools in learning and managing many issues (medical and otherwise).
I would caution people to not rely solely on peer support and patients groups, though. Those of us with only personal first-hand knowledge (rather than medical training) can have a fairly narrow view of any given mental disorder.
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Last reviewed: By John M. Grohol, Psy.D. on 13 Jun 2007
