A recent discussion paper, presented by participants of the Institute of Medicine Evidence Communication Innovation Collaborative (ECIC), found that 94 percent of U.S. adult social media users with health conditions agreed with the use of their health data – shared anonymously – to help clinicians improve care. ECIC is co-chaired by Bill Novelli and Kaiser Permanente’s former CEO, George Halvorson.
The report found that the vast majority of U.S. adult social media users with health conditions strongly endorse sharing their health data anonymously to help improve care they and future patients receive, as well as to strengthen health care. The paper titled, Social Networking Sites and the Continuously Learning Health System: A Survey, was released today by The Institute of Medicine (IOM).
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An estimated 7 in 10 U.S. adults live with a chronic condition. In the paper, the authors describe a deep reservoir of data altruism that was underscored by patients’ answers to a series of related questions, which found that 92 percent supported sharing their health data to help research, and 94 percent would do so to help other patients like themselves.
This willingness to share data for society’s benefit was expressed despite lingering concerns that sharing health data still carries some degree of risk. Some 76 percent of social media users with a medical condition believed that data from their personal health record could potentially be used without their knowledge and 72 percent worried the disclosure could lead to denial of health care benefits, despite the passage of the Patient Protection and Affordable Care Act.
The authors, members of the ECIC, identified a gap in how digital health data are protected in the U.S. and argued for policies that “foster the delicate balance of a free and democratic society, support the sales of goods and services based on a user’s data, while simultaneously preventing harm.”
In a commentary released today, ECIC co-chairs George Halvorson and Bill Novelli note that “significant reform in the practice of research and the delivery of health care will be needed to make patients’ vision a reality, and as the nation moves toward an emphasis on value and coordination in health care, investment in resources for data sharing and analysis will become increasingly critical to success.”
Halvorson noted that when privacy is protected the learnings can be profound as was recently found at Kaiser Permanente when de-identified patient data were used to conduct research on reducing mortality rates for stroke patients. Patients gave their permission in advance for the research to be conducted and the data showed that timely administration of a statin to patients hospitalized after suffering strokes dramatically saved lives. “We need a world where more research like this can be done,” Halvorson wrote. “The learnings that can result from that research will save many lives.”
IOM’s ECIC survey was completed by 2,125 U.S. active members of the social media web site PatientsLikeMe, where people can share health-related information that includes their blood glucose levels, mood, medication dosages, and related side effects.
