PatientsLikeMe Survey Shows Vast Majority of People With Health Conditions Are Willing To Share Their Health Data

Paper by Members of the Institute of Medicine’s Evidence Communication Innovation Collaborative Highlights Desire to Improve Care, Strengthen Health Care System


"It’s exciting to see research that so clearly illuminates the patient voice"

CAMBRIDGE, Mass.--(BUSINESS WIRE)--A survey of 2,125 PatientsLikeMe members in the U.S. says that adult social media users with health conditions embrace the idea of sharing their health data online if it helps clinicians improve care, helps other patients, or advances medical research.

The survey results were released today in the discussion paper Social Networking Sites and the Continuously Learning Health System: A Survey by members of the Institute of Medicine’s (IOM) Evidence Communication Innovation Collaborative. Of those respondents with a medical condition:

  • An overwhelming majority would be willing to share health data if it could help others in some way: 94% would be willing to share to help doctors improve care; 94% would be willing to help other patients like them; and 92% would be willing to share to help researchers learn more about their disease.
  • Four out of five respondents (84%) would be willing to share their health information with drug companies to help them make safer products, and 78% would do so to let drug companies learn more about their disease.
  • 94% believe that their health data should be used to improve the care of future patients who may have the same or similar condition.

The results also highlighted concerns that sharing data could carry risk. Some 76% of respondents said they believe that data from their personal health record could potentially be used without their knowledge, 72% to deny them health care benefits, and 66% to deny them job opportunities.

“It’s exciting to see research that so clearly illuminates the patient voice,” said Sally Okun, a co-author on the paper and PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety. “This paper affirms the great value in sharing health data, and signals a new age in medicine where patients and researchers can learn in real-time from the shared experiences of others.”

More information, including the discussion paper, a one-page summary, and individual tables, is available at

About PatientsLikeMe

PatientsLikeMe® ( is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at or follow us via our blog, Twitter or Facebook.


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