94% of Social Media Users Agree to Share Health Data

94% of Social Media Users Agree to Share Health Data

An interesting discussion paper was recently released by IOM’s Evidence Communication Innovation Collaborative. Below are the key findings listed in the paper and a link to download the full paper.

How will survey results like these affect HIPAA guidelines? Is the patient's opinion taken into consideration in policy? Should there be an "opt-in" function at the individual level

KEY FINDINGS FROM THE SURVEYS
Sharing for care improvement: 94 percent of American social media users agree with sharing their
health data to help doctors improve care.

  • With appropriate anonymity, 94 percent of American social media users with a medical condition would be willing to share their health data to help doctors improve care. The same proportion (94 percent) would be willing to do this to help other patients like them.

Sharing for better evidence: 92 percent of American social media users with a medical condition agree
with sharing their health data to help research.

  • 92 percent of American social media users with a medical condition would be willing to anonymously share health data for researchers to learn more about their disease. 84 percent would be willing to share such information with drug companies to help them make safer products, and 78 percent would do so to let drug companies learn more about their disease.

Sharing to help others: 94 percent of American social media users agree with sharing their health data
to help patients like themselves.

  • 94 percent of American social media users believe that their health data should be used to improve the care of future patients who may have the same or similar condition.

Desire to share outweighs open questions: 76 percent of American social media users worry that health data they share may be used in detrimental ways.

  • 76 percent of American social media users with a medical condition believe that data from their personal health records potentially could be used without their knowledge. 72 percent believe their data could be used to deny them health care benefits, and 66 percent believe it could be used to deny them job opportunities.

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