Social media and kidney transplants

by George Taniwaki

An interesting story in Tech. Rev. May 2010 describes how a social media site called PatientsLikeMe can be used to quickly run clinical trials at low-cost. PLM is a free site where patients can record their daily health status, find other patients with similar conditions, and share ideas. Knowing that you are not alone and getting support from others like yourself are very powerful forces when dealing with complex and serious medical conditions.

On the flip side, PatientsLikeMe’s operating costs are paid for by healthcare companies that get access to anonymized patient data and permission-based access to the members. Clinicians can recruit volunteers, run clinical trials with them, and compare the outcomes between those that volunteered and those that did not. The results will not meet the standards for a double-blind study, but the ability to compare the attributes of participants and nonparticipants to control for bias is something that is very difficult to do in a typical study. One result reported in 2008 using PatientsLikeMe data showed that generic lithium was not effective at treating amyotrophic lateral sclerosis (ALS). The results appear to refute the conclusions of a study that had been published in Proceed Nat. Acad. Sci. Feb 2008. The PLM data is compelling, but there is a whole list of caveats that need to be considered.

Effect of lithium on ALS. Image from PatientsLikeMe

Researchers can also present their results to the community as well as engage with members to consider fruitful areas for future research.

Like most healthcare websites, PatientsLikeMe has a privacy policy. But what makes PatientsLikeMe different, is it has an openness philosophy. Part of it reads,

“Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.”

PatientsLikeMe currently has communities devoted to a range of common diseases including ALS, epilepsy, HIV/AIDS, multiple sclerosis, and Parkinson’s disease. It also has communities for several rare diseases I am unfamiliar with, like progressive supranuclear palsy. In March, PatientsLikeMe joined with Novartis to announce a community for organ transplant patients. I just joined the organ transplant community, registering as a community member rather than as a patient (there isn’t an option to join as a live organ donor). There are already 1,429 members in the community. I plan to track the site and will report any interesting findings in future blog posts.