Patients Willing To Share Health Data Online

By Katie Wike, contributing writer

Vast majority of patients would share health information online if it would improve their health or the health of others

A Patients Like Me survey asked more than 2,100 patients with health conditions who use social media their opinions on sharing personal health information. Results indicate they are overwhelmingly open to the idea of sharing their health data online if it would help others.

• 94 percent would be willing to share to help doctors improve care
• 94 percent would be willing to help other patients like them
• 92 percent would be willing to share to help researchers learn more about their disease

“It’s exciting to see research that so clearly illuminates the patient voice,” said Sally Okun, a co-author of the study’s accompanying paper and PatientsLikeMe’s vice president of Advocacy, Policy, and Patient Safety. “This 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.”

Further insight gleaned from the study:

• 84 percent would be willing to share their health information with drug companies to help them make safer products
• 78 percent would do so to let drug companies learn more about their disease
• 94 percent believe that their health data should be used to improve the care of future patients who may have the same or similar condition

The paper, Social Networking Sites and the Continuously Learning Health System: A Survey, notes, “The Americans who participated in the CRNRC and PLM surveys, whether sick or healthy, want their data shared anonymously to improve the health of patients like themselves and to assist clinicians and researchers in improving healthcare delivery.

“However, their commitment to data sharing is accompanied by worry. They fear that the data they currently share could be used in detrimental ways, such as to deny them future job opportunities or health care coverage, although this last concern has been neutralized by passage of the ACA.”

Health IT Analytics reports, according to IMS Institute for Helathcare Informatics, “Social media is a good opportunity for clinicians to provide some of the ‘pastoral support’ associated with the profession, and answer questions for a large number of people online.” Although IMS also cautions data sharing must be conducted properly and “needs to be utilized to its fullest potential in order to ensure the best possible outcomes for patients.”