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.
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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."
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