How representative are PatientsLikeMe patients to the general population?

Mimi Yin over at The Common Data Project blog posed some interesting questions about data in our communities: Back in April, I wrote about the site PatientsLikeMe.com, which provides a wonderful new service that allows individual users to share the most intimate details of their medical conditions and treatments, which in turn creates a pool of invaluable information that is publicly available. However, I also wonder about how their data may be skewed because their users are limited to the pool of people who are comfortable sharing their HIV status and publicly charting their daily bowel movements. The question we have for PatientsLikeMe is: Who isn’t being represented in your data set? And how does that affect the relevance of your data to the average person who comes to your site looking for information? Who won’t find your data helpful because it’s not relevant to their personal situation? First of all, Mimi brings up outstanding questions.  Let’s take the overall philosophy first, openness.  PatientsLikeMe is built around the idea that patients can drive their own health outcomes through sharing their health information.  This is a movement away from privacy as a paradigm for health management.  That being the case, the …

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