Thursday, November 19, 2009


On Monday, November 16, NPR did a piece on what it terms called “e-patients”. According to the article, “61 percent of adults say they look online for health information. There's a term for them: e-patients.”

The article goes on to note that most e-patients go online to read about a health condition or a potential health condition. To be sure, there are a plethora of sites offering information on diseases and conditions (such as WebMD and HealthCentral). This approach has raised concerns over the possibility of patients self-diagnosing and misdiagnosing, due to incomplete information found online or a lack of expertise.

But there has been a new trend in the behaviors of e-patients. A Pew study notes that approximately 20% of those e-patients now go to social networking sites where they can talk to medical experts and other patients, says the Pew Internet and American Life Project.

“They are posting their first-person accounts of treatments and side effects from medications,” says Susannah Fox of the Pew Internet and American Life Project in the NPR story. “They are recording and posting those podcasts. They're tagging content. They are part of the conversation. And that, I think, is an indicator of where we could be going in terms of the future of participatory medicine.” She notes that internet sites have grown voraciously in the past several years, and that a “much deeper level of information” is available now.

The ALS community has clearly been deeply involved with this kind of social-media transformation, and much of it relies heavily upon these mechanisms of communication. Many PALS are familiar with Jamie Heywood’s site, Patients Like Me. The site is a for-profit entity designed to be a “treatment, symptom and outcome sharing community for patients with life-changing conditions.” The platform “enables patients the opportunity to share their personal stories and health information in a way that illuminates great ideas and new knowledge about their diseases.”

Heywood created Patients Like Me because he was trying to find out about research advances that might help his brother (a PALS, who later died of the disease), and the site eventually grew to encompass other diseases. Patients Like Me currently has about 50,000 members.

Building on concepts of sharing and open information, Heywood suggests, is what makes his site revolutionary. “The amazing shift is that we've pushed out this concept of sharing,” he said. “Which is to say: If you share information about your own experience with this disease, then we can facilitate the conversation that you want to have with the person in the world who is just like you — whether they live in Vancouver, Canada or Australia, or down the block.”

A resource like this is meant to enable patients to find someone else who “is on the same treatments, is dealing with the same side effects ... whatever variable matters to you at that moment. To find out whether your concerns are justified, they make sense, whether you're doing the right thing — that's the transformation,” Heywood says.

Prize4Life is not alone in recognizing the importance of such virtual stores of information. In fact, in a project to provide both researchers and patients with a one-stop shop for good information on ALS, Prize4Life recently created the ALSForum, in conjunction with the Alzheimer's Research Forum.

The same Pew study found that 39 percent of e-patients typically use another social media site such as Facebook or Twitter. For ALS patients, assistive technology is clearly a lifeline, and Facebook, Twitter, and Patients Like Me are channels through which patients can more easily interact with each other and with the world.

Prize4Life was, however, pleased to see the NPR piece note that patients say they trust their most traditional resource the most when it comes to the hard questions of disease, diagnosis and treatment: their own doctor.

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