Cyber-Inclusion: Rx for Isolated Epilepsy Patients

A social network for patients with life-changing conditions such as epilepsy is helping patients overcome social isolation and providing data for research.

The isolation experienced by patients with epilepsy deprives them of the daily social interaction most of us take for granted. Now, an unprecedented experiment is helping people with epilepsy and other chronic diseases overcome this isolation and, at the same time, provide data for medical research.

PatientsLikeMe (PLM) is a new social network open to patients diagnosed with life-changing illnesses including Parkinson's disease, chronic depression, or amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease). To date, close to 5000 of the network’s more than 110,000 members are epilepsy patients.

Each day, PLM members receive an e-mail greeting asking them to quantify and share details of their symptoms. Encouraging complete openness, the network collects information on patients’ medical and family history, treatment, medications (including "off-label" uses), self-directed adaptations, and comorbid conditions. The company then sells aggregated member data, with prior disclosure to patients, to pharmaceutical researchers.

PLM was founded in 2004 by brothers Benjamin and James Heywood and their friend Jeff Cole with the aim of gathering information about interventions that might extend the life of ALS patients. (A third Heywood brother had been diagnosed with ALS.) “We were a well-resourced family with access to all the best doctors and scientists,” Benjamin Heywood told Technology Review. “But it was amazing how much we learned from our members from day one.”

Neuropsychologist Paul Wicks, PhD, PatientsLikeMe’s director of research and development, took the lead on the network’s expansion to include patients with a range of chronic conditions. PLM’s goal is to help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?” Although some researchers have questioned the validity of patient-reported data, PatientsLikeMe has used it as the basis for several published peer-reviewed studies.

In the January 2012 edition of Epilepsy & Behavior, Wicks and colleagues at PatientsLikeMe and UCB published an article titled “Perceived benefits of sharing health data between people with epilepsy on an online platform.” They reported that one-third of the network’s members with epilepsy know no one else with the condition before joining; after joining, 63% had connected with at least 1 other patient. In addition, they reported that 59% of epilepsy patients had found another patient experiencing identical symptoms; 58% reported an improved understanding of seizures; and 55% reported learning more about symptoms or treatments.

Pharmacists who see epilepsy patients withdrawing socially can suggest they visit PatientsLikeMe. Patients may enroll anonymously.

Ms. Wick is a visiting professor at the University of Connecticut School of Pharmacy and a freelance writer from Virginia.