Social media users open to sharing their data

Most (94 percent) social media users with health conditions said they would be willing to share their medical data with physicians to improve overall healthcare, provided that their privacy is protected, according to a discussion paper from the Institute of Medicine (IOM).

The paper, "Social Networking Sites and the Continuously Learning Health System: A Survey," is based on two separate online surveys. One was conducted in March 2012, using a nationwide random sample of the general public by the Consumer Reports National Testing and Research Center and included 1,210 respondents. The second was conducted by PatientsLikeMe, an online community for people with chronic illnesses, in September and October 2012 and included 2,890 users of the social media site.

The IOM discussion paper also found the following:

• 92 percent said that they would share their data to help researchers learn more about their illness;
• 84 percent said they would share their data with drugmakers to help them make safer products; and
• 78 percent said they would share their data to help drugmakers learn more about their illnesses.

Security is a significant concern for the respondents, however. Findings include the following:

• 76 percent of respondents said they believed information from their personal health record potentially could be used without their knowledge;
• 72 percent said they believed the information could be used to deny them health benefits; and
• 66 percent said they believed it could be used to deny them job opportunities.

The IOM researchers suggest a regulatory approach that would control data use and called for data protection policies that "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."

Read the complete discussion paper.