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Parade should have asked e-patients

Aside from debunking a crummy column, this is a call to action for journalists. Today Parade featured a column that appears to be pure flackery. If the editors had done a reality check with a patient community they would have been much better informed, with little...

Two Research Papers Published on PatientsLikeMe

Two research papers were published this month on the Health 2.0 website, PatientsLikeMe. PatientsLikeMe is arguably the only “real” health social network online today, because it lets patients share actual data that matters with one another — their...

The Wisdom of Patients Report

The California HealthCare Foundation published a report the other day entitled The Wisdom of Patients: Health Care Meets Online Social Media (PDF) which is a nice overview of the current state of Health 2.0. The report is four chapters long: Social Networks Come to...

E-patients Unite To Document Problems with Generic Drug

For over 30 years at The People’s Pharmacy, we have been guided by a respect for people’s ability to make informed decisions about their health. We have always welcomed input from consumers, but we had viewed our website as an information dissemination...

NON-Practicing Patients

It took me a few days to digest what was troubling me with the New York Times Magazine article. The efficacy of the ACOR groups is based in part on the dual fact that patients and caregivers members of the online communities NEVER behave like they are replacing their...

“Succeeding in online health” lunch meeting

Today outside Boston I attended a “lunch-n-learn” session of the Massachusetts Technology Leadership Council, titled “Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites.” At first I thought it was going to be about creating...

Friends, Family & Post-surgical Outcomes

An article in this week’s Journal of the American College of Surgeons shows that “patients with larger social networks showed better outcomes than patients with small or nonexistent social networks.” Here is the abstract (note: the first time I...

More 2.0 Definitions

Susannah once again posted a series of cool/very useful links! And I know we should keep on providing definitions for all the “Health 2.0” applications we are talking about. So, out of pure laziness and because the LeFevers brothers have already done the...

Rate a Doctor?

For years Doc Tom urged us to facilitate patients’ publicly rating doctors as a way to accelerate e-pateints movement. Alan (DrGreene) was excited about this, even though he was a physician, but I was afraid it would open Pandora’s box. In the winter of...

E-patients With Chronic Conditions

Sometimes my research becomes a little too much for me to bear alone. Like when I find that people living with chronic disease and disability are among the least likely to have access to the internet, but who, once online, are among the most avid e-patients. Or when I...

International e-Patients

The internet breaks completely all geographical barriers. This is particularly important for those suffering from a rare condition and who do not have direct access to the few major cancer centers with in-house specialists for that condition. We have a developing...

Online Patient Groups

Laura Landro’s column in the Wall Street Journal features a series of profiles of online patient groups like MPDinfo.org and ACOR.org, among others. Now seems like the right time to post some data that I’ve been holding back, waiting for the right...

Patient-Driven Content at MedShelf.org

Derek Hansen, a fellow e-health researcher, wrote to me about his latest project and it fit so perfectly that I asked him to write it up for us — thanks, Derek! ——————- Online support groups have long been recognized as an...

The Voice of the Patient

This January 12, 2005 interview with Don Berwick, at the Health Affairs web site, underlies the importance of doing all we can to make the “voice of the patient” directly accessible-to the press, health policy planners, government officials, and medical...

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