Neuropsychologist Paul Wicks’s skills as a researcher have made him
invaluable to the success of a social networking site for patients.
BY BETH AZAR
Not long after Kimberly* learned she had multiple sclerosis, she discovered PatientsLikeMe ( www.patientslikeme.com), an online community where
people with mental and physical health disorders give one
another social support and share information about their
diagnoses, treatments and symptoms. Kimberly uses the site
daily, not only to interact with other MS patients, but also
to help her track her condition. The disease has affected her
memory, so having a place to store information about her
medications, their side effects, her pain levels and other disease-
related issues allows her to evaluate her health status and
provides a detailed map of what’s happened with her health
between visits to her neurologist.
*Full name not available for privacy reasons.
to protect users’ privacy and creates a massive database for
academic and commercial researchers, thanks to the work of
neuropsychologist Paul Wicks, PhD, who directs research and
development at PatientsLikeMe.
Wicks has harnessed his talents to shape the PatientsLikeMe
database into a tool that he believes will provide researchers
with a rich dataset, larger than any they could obtain through
traditional research methods. Within PatientsLikeMe, the
amyotrophic lateral sclerosis (ALS) community alone boasts
almost 5,000 users, a huge number compared with the 30 to 40
patients in the average ALS study.
“PatientsLikeMe provides the biggest aggregated patient
registry for diseases like ALS, mood disorders and multiple
sclerosis,” says Melanie Swan, of MS Futures Group and a
researcher who has written extensively about how online
communities can advance scientific discovery. “Even if it only
captures 5 percent of a patient population, that’s many times
more than a traditional research study can hope to access.”
Today, PatientsLikeMe has more than 135,000 members with
more than 1,000 conditions. To get the most out of the data
patients provide, Wicks and his research team design surveys
tailored to each disease. Named one of Technology Review’s