Americans Want to Share Health Info on Social Networks, Report Finds

As health information management (HIM) professionals debate the role of social media’s inclusion in electronic health records, two new surveys reveal broad consumer acceptance for sharing their own health information.

Ninety-four percent of American social media users would agree to share their health information on social media platforms to help doctors improve care, as long as their identities were protected. The same percentage of Americans with chronic health conditions would anonymously share health information online if it would help others with the same condition. These were just a couple takeaways presented in two discussion papers released by the Institute of Medicine (IOM).

The discussion papers were based on two surveys. One survey, conducted by the Consumer Reports National Testing and Research Center in 2012, polled 2,094 members of the general public. The other, also done in 2012, was conducted by PatientsLikeMe, an online community for people with chronic health conditions. Of the 13,324 members polled, 2,890 responded.

Findings of the surveys revealed some concerns that health information discussed in non-private online spaces could be harmful. Seventy-six percent of respondents expressed concern that data from their personal health records potentially could be used without their knowledge. What’s more, 72 percent believe their data could be used to deny them healthcare benefits, and 66 percent believe it could be used to deny them job opportunities, according to the findings.

Authors of the IOM discussion papers note that given the surveys’ findings, healthcare providers and regulators have an obligation to respond to patients’ data desires to share their data. A strong patient-clinician partnership is key, they write.

“Success will require changes in the culture, standards, and recording of the care experience, so that clinicians and patients both become active stewards in the learning process, facilitated by the incentives and regulatory streamlining that make change possible,” authors George C. Halvorson, William D. Novelli, write.

Click here to read the full discussion paper.


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