Patient social networks are a new niche in the social network world. Like most social networks, this new phenomenon, called Health 2.0, grew from the need to connect to a fellow sufferer, to reach out daily to find out what treatments work, and what do not, what symptoms to expect and what medicines to take or not take. Especially to a person suffering from a rare or obscure disease, such a network could mean a lifeline. And in a world where up to now, your knowledge of what was happening to your own body was restricted to what your doctor deigned to tell you, these networks are giving the patients some control over their treatments, as well as giving them access to a community they can strongly relate to.
Some patient networks like PatientsLikeMe (membership growing at 35% per month) tackle a variety of chronic diseases like ALS, Parkinson’s etc. Others are confined to certain specific diseases – DiabeticConnect is for people with diabetes and Disaboom is a site for the disabled.
As has been the case with earlier successful social networks, this too is seeing the beginning of the shift of power, from the all-powerful Medical Establishment to the sufferers of the disease. Drug side effects can be reported to the regulators by patients who are experiencing them, without waiting for the manufacturers to come forward. Pharma companies can use these social networks to quickly recruit subjects for clinical trials, thus speeding up research. Patients can simply band together and run their own clinical trials, leaving drug companies and doctors out of the loop.
Of course, these networks are still in their infancy, but they are growing fast – PatientsLIkeMe expects their membership to reach 1 million by 2012. I think this is another wonderful example of how the Web is changing so many lives and creating communities in ways that we could never have imagined.