Chronic Condition Web Site Raises Safety, Privacy Concerns

A Web site for patients with chronic conditions provides users with data on other patients' treatment regimens and experiences, but some physicians worry that the site will lead patients to self-medicate or self-treat, the New York Times Magazine reports.

The site, called PatientsLikeMe, has compiled data on more than 7,000 patients with diseases, such as Parkinson's, multiple sclerosis and AIDS, as well as mental health conditions. The site's members provide quantitative data about their experiences, symptoms and treatments, which then is compiled by the site's software and turned into graphs and charts.

Members can provide more specific details about certain drug or treatment issues in the site's forums. Similarly, members can update their mood status every hour on a scale from very bad to very good and see the resulting data mapped over time.


Physicians are concerned that patients might misinterpret the data on the site, find false hope or take unproven and risky treatments and dosages, the Times Magazine reports.

In addition, because PatientsLikeMe is an opt-in service and not a health care provider, data on the site are not protected by HIPAA medical privacy rules.

Joe Heyman, chair-elect of the American Medical Association's Board of Trustees, acknowledged the potential benefits of such a Web site but said there should be national regulations that cover companies like PatientsLikeMe that use such information.

The Web site's privacy policy warns users that sharing data carries risks. However, its "Openness Philosophy," prominently displayed on the site, states, "When you and thousands like you share your data, you open up the health care system ... We believe that the Internet can democratize patient data and accelerate research like never before" (Goetz, New York Times Magazine, 3/23).

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