In a Forbes column, David Shaywitz -- adjunct scholar at the American Enterprise Institute and Forbes contributor -- writes that online communities can benefit patients by providing social support and advancing research.
Shaywitz describes several online patient communities, such as AskaPatient, HealtheTreatment, and PatientsLikeMe, which allow patients to post reviews of various treatments and discuss their conditions. He writes that patients "look for many things from an online community -- support, understanding, advice."
According to Shaywitz, "one fairly large swatch of white space is the uncaptured input from the millions of patients who contend with illness to the extent that they think about it when they are sick or symptomatic, but otherwise aren't inclined to join patient communities." He writes, "We need to find a better way to hear the voices of these patients as well."
Shaywitz acknowledges that some experts have expressed concern about the fact that many online patient communities earn money by selling the patient feedback information they collect to the health care industry.
However, he argues that selling patient data actually could help patients because it could advance research on their medical conditions. He writes that "if you have a difficult condition, you arguably should hope -- fervently -- that industry is trying to listen to your voice, trying to understand your problems, and yes, trying to use this information to make an effective product they can sell for a profit" (Shaywitz, Forbes, 2/7).