December 10, 2009 | 7
Swallow the doctor’s diagnosis whole, or spend weeks plowing through the primary research literature at a medical library—at the risk of alienating your physician. Those were two of the primary choices available to lay people diagnosed 20 years ago with a serious disease. Today, motivated patients can use the Internet to dive well beyond WebMD, by joining online support groups and research-mining communities that often know more detail about etiology and treatment nuances than just about any medical specialist.
Countless well-educated patients and even some doctors and medical researchers have now embraced this approach to health care, part of a burgeoning movement called participatory medicine, but questions remain about the efficacy of this tactic and its push for stronger collaborations among patients and their doctors and other health care professionals.
The Journal of Participatory Medicine, a free online, open-access publication launched October 21 by the Society of Participatory Medicine at the Connected Health Symposium in Boston, aims to bring some science to bear on these questions, while also fortifying the field’s base and amassing relevant information and evidence.
Managing Editor Sarah Greene, who helped launch and build out The New York Times‘s Health section online and various digital start-ups, said the new journal aims to "stimulate and publish research that shows that outcomes are improved when patients take responsibility for their health and are involved in the decision-making process. The research might point the other way—we don’t know. But we think there’s a lot of anecdotal evidence that health care could be transformed when patients take responsibility for their health and are more central and really try to understand and even do their own research."
Only a handful of articles evaluating participatory medicine have been published, Greene said, adding: "We think that is one reason that some physicians don’t really buy into it. They’re not taught in medical school to think of patients that way. There’s a lot of patrician-oriented attitudes that are frightening to patients and makes them afraid to ask questions."
At least one physician, George Lundberg, editor of JAMA the Journal of the American Medical Association from 1982 to 1999, wrote in the Journal of Participatory Medicine‘s launch issue that he thinks those attitudes will change by "enhancing physician and patient self-awareness and cultural understanding that will blunt biases and improve communication."
Lundberg obviously favors participatory medicine, which is growing in relevance as members of Congress currently work toward passage of a health care reform bill. Even with passage, true medical reform will only come with more patient involvement with their physicians, including open sharing of their medical records, Lundberg wrote. With open medical records and other databases cataloguing treatments and symptoms, patients can, for instance, make more informed decisions and help in avoiding treatment errors.
Gilles Frydman, a member of the journal’s editorial board who was pulled into participatory medicine because of life-threatening complications his wife had during pregnancy and also later when she was diagnosed with breast cancer, coined the term participatory medicine and wrote the Wikipedia entry for it. He was also part of an earlier group founded by physician and consumer-focused medical writer Tom Ferguson, who started Medical Self Care magazine and long pushed, nearly single-handedly, for the "e-patient"—empowered, equipped, engaged, enabled.
Ferguson and his colleagues started a white paper on the concept (pdf). After his death from multiple myeloma in 2006, the participants regrouped and brought in Wired magazine’s founding executive editor Kevin Kelly to brainstorm how to spread the message. The journal was the answer, they decided.
Other luminaries involved include Alan Greene, credited as the first doctor to have a Web site, who is the journal’s deputy editor. (He is no relation to Sarah Greene.) The group also enlisted a patient advocate, Jessie Gruman, founder of the Center for Advancing Health, and physician Charlie Smith of the University of Arkansas for Medical Sciences to serve as co-editors.
Frydman’s enthusiasm for participatory medicine comes in part from founding the Association of Online Cancer Resources in 1995, which now distributes six million emails monthly to dozens of communities of people discussing all kinds of cancers and associated conditions. Considered the father of online patient communities, he now spends a lot of his time tracking Twitter trends and building a site that aggregates the large-scale social patterns for analysis.
The journal, like ACOR, was not created as a political statement, Frydman says. "I hope for the same with journal. Now we are much smarter. We have 15 years of experience. We can see historical trends. This is no longer the story of a small grass roots movement. It is having a really big impact," he remarks. "At this point we have to understand what we do, what is good and what is not good."
Journal board member Dave deBronkart, a kidney cancer survivor since 2007 who has taken on the moniker "e-patient Dave" and dedicated his post-cancer life to spreading the participatory medicine message, is highly visible online, like Frydman. As co-chair of the Society of Participatory Medicine, deBronkart testifies at federal and other policy hearings on the topic and generally tries to spread the e-patient meme. He’s also a regular poster to Twitter and to the Society for Participatory Medicine’s e-patients.net blog.
"People asked JFK how he become a war hero. He said, ‘It’s easy. They sank my boat.’ How did I become an e-patient? Well…," deBronkart says.
One of deBronkart’s messages is that people talk at health industry meetings about patients as if they are not in the room. "’Patient’ is not a third-person word," he says.
Still today, many people suffer from rare diseases, and "no one is hearing from them," Frydman says. "They are still in their silos. There is no reason for the public at large to hear anything about what they are doing, but it’s a large movement when you put together all those groups and they have already demonstrated in past 20 years that you can really transform the health care system if you give more power to the patients."
Submissions are now coming in for the journal’s second issue, set to bundle out, for MedLine indexing purposes, in the first quarter of 2010, Greene says, although articles will be peer-reviewed and published online as they come in.
Eventually, Greene aims to post user-generated content, along with conventional journal papers. Multimedia platforms on the journal site will enable users to upload videos, tutorials and educational information on effective approaches to participatory medicine, patient narratives, and other types of patient, physician and health care professional contributions.