PatientsLikeMe pushes data sharing

PatientsLikeMe has launched a campaign to encourage the sharing of medical data to advance research.

In a series of public service announcement-type videos, the patient network hopes to convince people of the power of donating health data.

In the videos, PatientsLikeMe co-founder Jamie Heywood discusses being diagnosed with a life-changing condition and frames the underlying problem in creating a patient-centric healthcare system, before encouraging viewers to participate in a movement around health data donation.

“This year marks the 10-year anniversary of when our co-founders first introduced the idea that openness in healthcare is a good thing, and should be encouraged and celebrated,” said Michael Evers, executive vice president of marketing and patient advocacy at PatientsLikeMe.

“The 'data for good' campaign is our way of tipping our hats to the massive amounts of data that our members have shared to date. It's also meant to inspire more people to contribute their experiences to accelerate research,” he added.

This campaign launch follows a recent paper published by the Institute of Medicine highlighting a PatientsLikeMe survey focused on people's willingness to share health information to change medicine.

According to survey results published in the paper, 94 per cent of US adult social media users with a medical condition agree with sharing their health data to help fellow patients and believe it should be used to improve the care of future patients.

More than 250,000 members are donating their disease data to research on PatientsLikeMe. To date, the community has contributed more than 21 million structured data points about their disease experiences.