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:
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.”