Patients, Social Networking, and Moral Complexity

While returning to Boston from New York on Amtrak yesterday, I read a fascinating New York Times article about an internet startup - "PatientsLikeMe."

Like many other health innovations, PatientsLikeMe starts with a personal story. In 1998, Stephen Heywood, 29 years old, developed amyotrophic lateral sclerosis. His older brother, an MIT graduate, quit his job to work on a cure, initially founding the ALS Therapy Development Institute, a not-for-profit enterprise that "uses entrepreneurial spirit and techniques to aggressively seek out, develop, and deliver promising therapies to slow, arrest, and cure ALS."

PatientsLikeMe is a cross between social networking sites like MySpace and a medical startup. It invites patients with specific conditions (thus far ALS, HIV, Multiple Sclerosis, Parkinson's Disease, and, recently, "Mood" conditions) to share their experiences of symptoms and treatments. The distinctive feature of the site is software infrastructure that pools the patient reports and presents "findings" in easy to follow graphic form. The site includes brief stories from individual patients as well.

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.

Clinicians worth their salt also learn from patients. It never would have occurred to me to tell patients with schizophrenia who were experiencing auditory hallucinations and talking back to them that carrying a cell phone could help them look less "crazy" on the street, if one of my patients had not told me of the technique.

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. (As an example, see my October 4 posting about how the "Healthy Mothers, Healthy Babies" site endorsed fish consumption in pregnancy in the wake of a $60,000 donation from the National Fisheries Institute).

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.

The web situation is one of moral complexity, with multiple opportunities for benefits and harms, combined with tremendous uncertainties. But that is what medicine has always involved!