NCPA - National Center for Policy Analysis


December 12, 2008

What would happen if critically ill patients joined together, obtained their personal information and made it public?  Such a real-world experiment is under way at the Web-based social network PatientsLikeMe.  The 2-year-old venture has already signed up 23,000 participants in five chronic-illness categories -- amyotrophic lateral sclerosis (ALS), Parkinson's disease, HIV/AIDS, multiple sclerosis and mood disorders.  This new patients-as-partners model, also known as Health 2.0, is changing the nature of drug research and the practice of medicine, says Businessweek.

In fact, PatientsLikeMe -- which organizes patients by disease and shares their medical data, experiences with drug effects and other information -- and other startups could have a fundamentally impact on medicine, says Businessweek:

  • It is built on the belief that the wisdom of crowds of patients will bring insights, solace, and most of all, power, because, as it turns out, patients talking among themselves with complete transparency produce all kinds of unexpected results.
  • Drug side effects can be reported to regulators by the patients experiencing them, without waiting for the manufacturers to come forward.
  • Pharmaceutical companies can use social networks to recruit subjects quickly for clinical trials, speeding up the pace of research.
  • Patients can simply band together and run their own clinical trials, leaving drug companies and physicians out of the loop.

However, critics worry that bad information will flourish in such forums, and no matter how often participants say they don't care who knows of their illnesses, there is always the risk that they will be harmed when personal information is exposed.

Yet even when privacy violations occur, as they surely will, patients who have embraced Health 2.0 are unlikely to give up their freedom to network, says Businessweek.

Source: Catherine Arnst, "Health 2.0: Patients as Partners," Businessweek, December 15, 2008.

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