PatientsLikeMe Launches Open Research Exchange

Social networking site PatientsLikeMe loans its 200,000-member community to academic and pharma researchers to validate online questionnaires that measure patient outcomes.

Ken Terry, Contributor

May 21, 2013

3 Min Read

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PatientsLikeMe, a social network that lets patients share health information with each other online, has announced it is piloting a medical research platform that lets researchers test new methods for measuring patient outcomes.

Funded by the Robert Wood Johnson Foundation, PatientsLikeMe's Open Research Exchange allows researchers "to pilot, deploy, share, and validate new ways to measure diseases within PatientsLikeMe’s community of more than 200,000 members," according to a news release. The researchers might be from academia or pharmaceutical companies, said Paul Wicks, PatientsLikeMe's research and development director, in an interview with InformationWeek Healthcare.

Founded in 2004, PatientsLikeMe initially focused on about 10 conditions, including multiple sclerosis and Lou Gehrig's Disease (ALS). It developed online questionnaires, known as "instruments," to measure the outcomes of patients with some of these diseases. Two years ago, Wicks explained, the company decided to expand its site to encompass patients with all kinds of conditions. Today, the network's database includes data, treatments and symptoms for about 1,500 conditions.

"It doesn't make sense for us, as a tiny research team, to try to build instruments for a disease a day -- particularly if there are experts out there and academic researchers who can get grants for this," he said. "So we're building a platform that allows other experts to come to our site and build new instruments."

What's in it for the researchers? If they were trying to do this kind of study in an academic medical center, Wicks said, it could take them years to organize the study, recruit patients through their doctors and hospitals, and analyze the data before they found out whether their instrument worked.

"With PatientsLikeMe, they come into a live situation, and with the first 10 to 20 patients, they can find out basic things about their instrument, such as that nobody is using the most severe ratings on the site, or that the questionnaire is too long. The patients are already here and they're willing to take part. So you can reduce the time from several years to several months."

Although interest in patient-reported outcomes is growing for several reasons, academic and pharma researchers are interested in it because many clinical trials include functional outcomes and quality of life as secondary foci, Wicks noted. This is especially true in studies of conditions such as cancer and HIV, where the therapy can have worse effects than the disease does.

This kind of outcomes research is a subset of a larger body of medical research that PatientsLikeMe has been engaged in for some time. Pharmaceutical companies and universities use PatientsLikeMe to recruit subjects for clinical trials. PatientsLikeMe, which doesn't charge membership fees or permit advertising, is financially dependent on the fees from these activities.

When patients sign up with the network, Wicks explained, they are informed that researchers might contact them. But they don't have to participate in studies if they don't want to. In some cases, such as PatientsLikeMe's recent deals with drug makers Sanofi and Merck, the network itself contacts patients who fit the study criteria and tells them about upcoming clinical trials involving those companies' products, he said. It also has developed a user-friendly interface to, which lists all ongoing clinical trials.

"We try to be as transparent as possible about who we work with," he added. "So in the case of the pharmaceutical research, we always want to mention by the name the companies we're working for. We don't do secret research. Patients are giving us their trust, and we have to honor that and be transparent with them."

PatientsLikeMe requires that measurement instruments validated on its Open Research Exchange be made available for free to anyone who wants to use them. However, Wicks added, a researcher could sell consulting services or imbed the instrument in a commercial app without violating the terms of the open license.

About the Author(s)

Ken Terry


Ken Terry is a freelance healthcare writer, specializing in health IT. A former technology editor of Medical Economics Magazine, he is also the author of the book Rx For Healthcare Reform.

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