Survey: Many social media users with health conditions willing to share health data

CAMBRIDGE, Mass. — Social media-savvy adults with health conditions would be willing to share their health data online if it helps clinicians improve care, helps other patients or advances medical research, according to a recent survey by PatientsLikeMe, a patient network and real-time research platform.

The results of the survey of 2,125 PatientLikeMe members were released 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; and
  • 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 healthcare benefits and 66% to deny them job opportunities.

“It’s exciting to see research that so clearly illuminates the patient voice,” stated Sally Okun, a co-author on the paper and PatientsLikeMe’s VP 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.”

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