Social media users would share health data, but only with privacy safeguards

A vast majority of U.S. social network users who have health conditions would be willing to share their health information to help doctors improve care and to help other patients like them—if their privacy is protected.

That's according to the results of two online surveys reported in what is being billed as a discussion paper by the Institute of Medicine.

Indeed, 94% of social media users who have medical conditions would be willing to share their health data with doctors to improve medical care, provided they were afforded “appropriate anonymity,” said the 27-page report, “Social Networking Sites and the Continuously Learning Health System: A Survey.”

Also, 94% of social media users indicated they believe their health data should be used to improve the care of other patients with the same or similar medical condition as their own.

But responding social media users also said they believe that their personal health data could be used without their knowledge, 76%; to deny them healthcare benefits, 72%; and to deny them job opportunities, 66%.

The use of social networks “is now almost ubiquitous” with 73% of U.S. adult internet users on social networks, the authors, citing earlier work by the Pew Research Center, noted. The growth in social media has “outpaced policy change designed to protect the interests of users,” they said. This data may “suddenly become a 'digital tattoo' that is almost impossible to remove,” the authors warned.

One nationally proposed method of health privacy protection takes the form of constraints placed on the data itself, such as consent management tags recommended by the President's Council of Advisors on Science and Technology in a 2010 report. The technology is being piloted under the auspices of the Office of the National Coordinator for Health Information Technology. But the report authors opt instead for a regulatory approach directed at controlling improper use of the data.

“Data protection policies in the near future must evaluate the delicate balance of a free and democratic society that supports the sales of goods and services (based on a user's data) while at the same time protecting people from discrimination,” the authors suggested. Protections in the Genetic Information Nondiscrimination Act of 2008 could be considered “to similarly protect health-related data shared” on social networks, they said.

Patients are typically unaware of how their own digital information is used or shared by third parties, the authors said.

Historically, the authors note, Institutional Review Boards have considered social networking sites to be “private spaces” in which an individual must be informed and their consent obtained before researches can use data.

But a marketer may “pose as a member of an online community and receive no reprimand for violating user privacy, even if they are using the data for search or commercial purposes,” the authors said.

Privacy constraints and the conduct of data holders differ widely between healthcare organization covered by the Health Insurance Portability and Accountability Act and social networking sites (SNS), which are not covered by HIPAA, the authors noted. “Therefore,” they said, “the same information when shared on an SNS does not have the same protection, and potentially may lead to discrimination by a future employer or health insurance agency, although this has not been reported in the literature to date.”

Last week, pharmaceutical manufacturers were given wider latitude in the use of social media by a new FDA draft policy. The regulator approved the use of comments from consumers and clinicians about a pharma company's drugs even when posted on social media sites owned or supported by the drug makers or distributors.

One of the surveys on which the report is based was a nationwide random sample of the general public by the Consumer Reports National Testing and Research Center, conducted in March 2012. It yielded 1,210 responses out of 2,094 polled. The other survey was a sample of users of the social medial website PatientsLikeMe. It was conducted by that for-profit company in September and October 2012 and produced 2,890 responses out of 13,324 samples sent.

PatientsLikeMe offers an online community for persons with chronic diseases. It is led by chairman Jamie Heywood, an advocate of the real-time use of voluntarily provided patient data for research. Heywood co-founded PatientsLikeMe in response to his brother Stephen, who battled ALS, or Lou Gehrig's disease, for seven years. Steven died in 2006.

Both Consumer Reports and PatientsLikeMe did their survey work pro bono on behalf of the IOM, said Diedtra Henderson, an IOM program officer and one of eight listed co-authors of the latest report.

Both papers note that the views expressed in them are those of the authors and not the IOM, which is part of the National Academy of Sciences.

Follow Joseph Conn on Twitter: @MHJConn