Lots of folks are joining social networks to chat about hobbies, to discuss shared work interests, or to express a love of favorite bands or movies. But as social media grows up, it’s finding new applications with broader social implications and the potential to create real change.
One such networking site is PatientsLikeMe. This free, member-driven site allows patients with life-altering illnesses such as MS, HIV, and depression (among others) to discuss their symptoms with other members, weigh the pros and cons of treatment options, chart their progress and simply connect with other folks in similar situations. But it also serves another important function: gathering data from the site’s contributors and using it to further research in particular areas.
Founded in 2004 by three MIT engineers, PatientsLikeMe is both a social networking site and a database that tracks and shares disease-related data with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. The site allows patients to communicate with each other while providing the people working on treatment and cures access to timely, real-world data.
Here’s an excerpt from one member’s bio, who lists herself as bi-polar:
I just discovered that I am Bipolar II– mostly thanks to this wonderful website and it’s fantastic members…I have come to realize both my fragility and my strength through the intensely humbling and challenging experiences this condition has presented. I suppose I choose to see it as an opportunity to learn more about myself and the human condition.
Most of us have been patients at some point in our lives and will invariably be patients again in the future. It will be interesting to see how the rise of collective intelligence shapes the experience of being a patient, which has historically been lonely and isolating. Social networking could help strip illness of its stigma, making it just another facet of the human experience while providing cures along the way.
2 responses so far ↓
1 James // Jul 24, 2008 at 10:43 am
When my younger daughter was first diagnosed with a rare, degenerative muscle disorder (Juvenile Dermatomyositis) many years ago, the network of patients who had already found the internet were extremely helpful and comforting. They’d coalesced around the website a Boston-area father had created to host a journal of his daughter’s experiences. At times it was more important to us than input from some of our doctors (and, in fact, helped us navigate a changing landscape of doctors over time).
2 Louis // Jul 24, 2008 at 4:07 pm
rhetorical question: what are the chances insurance companies will mine this sort of data (like prospective employers do already) to deny coverage for prospective subscribers?
it’s a wonderful idea–i just wonder it there’s any way to protect people who have already suffered so much from being harmed by our current US health care insurers.
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