Using social media to find medical treatments and support

Posted on July 29, 2010 by Jeffrey Newman

People with life altering diseases have a pressing need for information on the newest treatments and studies, including clinical studies which might stem the progress of their disorder. One website called “Patients Like Me” (www.patientslikeme.com) allows people with major diseases like ALS, HIV, Parkinson’s, MS and others to connect with others in the same situation. They can learn immediately, for example, about the real effects of specific medical treatments. They can find a large collection of crowd-source data on individual diseses, symptoms and treatments. For example patients can find out about the safety and side effects of Carbida-Levodopa a treatment for Parkinson’s disease. In addition people can learn about the latest research studies and clinical trials on certain diseases and who the experts are in the field. The site was founded by Ben and Jamie Heywood after their brother Stephen was diagnosed with amytrophic lateral sclerosis (Lou Gehrig’s Disease). The Cambridge based company sells anonymous data from its members to customers in the research and phamarceutical businesses. The number of patients on the site has grown from 25,000 in December 2008 to more than 55,000 early this year. The company’s backers include internet commerce pioneer Jay tenenbaum through CommerceNet, a New York private equity firm Invus, Omidyar Network, eBay founder Pierre Omidyar, and Collaborative Seed and Growth Partners, based in the Boston area.This use of social network media to gather information through the power of crowds regarding life threatening diseases, is in its early stages. It will be interesting to see if there will be a sharing of knowledge and data between such sites and the traditional medical research community to advance therapeutics from the lab to the clinic in time to save lives. I predict that when the sites have gathered a sufficient number of members, they may be able to gather on-line and in real time, information about the effects of approved drugs; symptom progress of diseases; engage in informal studies helping patients track themselves and to develop pools of individuals willing to provide their DNA, bloods and answer questionnaires which, along with data-mining tools might decipher trends, patterns, leads and biomarkers which researchers will use for eventual cures.