The aim - "providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease" - is important. Patients gather information from other patients anyway, and a networking site potentially that lets them extend their opportunity for learning, as from the 1801 ALS patients who are part of the "community," offers a lot.But an article in today's New York Times by Natasha Singer suggests that the concerns I voiced may be coming true.
But it doesn't require Karl Marx to see the risk in a business model that invites partnering with industry. Word of mouth is potent advertising. It will be nothing short of miraculous if drug and device companies do not seek to influence the statistics, just as they influence CME activities...
Many physicians fear "disintermediation" - the process by which patients circumvent the "middleman" role, gather their own information, and develop their own plans for treatment. This is wrong. The emerging web ventures are like medications, with varying constellations of potential benefits, harms, true claims, and baloney. Physicians can provide a distinctive service as knowledgeable, honest brokers - encouraging patients to use PatientsLikeMe and other new ventures, but educating them about risks, side effects, and false claims.
If you're interested in the Jekyll and Hyde potential of social networking sites like PatientsLikeMe, I suggest that you start by looking at a YouTube video of co-founder Jamie Haywood. It shows the site's exciting potential to produce rapid summaries and analyses of pooled reports from large groups of patients who voluntarily participate. Then go to the PatientsLikeMe website, and click on "information for industry partners."
I'm not a startup expert, but to me it looks like a brilliant business model. I'm comfortable with the use of real time patient reports as a source of information for responsible medical groups and health plans. But the use of the same material by drug companies to hone direct-to-consumer advertising and other commercial goals is creepy. And with regard to privacy, I wasn't reassured by this statement: "Other members, and sometimes Partners (pursuant to written agreements designed to limit the use and disclosure of your personally identifiable information), will be able to view your Profile Data."
PatientsLikeMe and other entrepreneurial ventures that harness web technologies and social networking can transform health care. But there's a substantial risk of cooptation by industry and corruption by the money that can be made.
This isn't a reason for trying to slow down the entrepreneurial energies, but only naive fools would give blanket trust to the ethical integrity of the new ventures.