Patient-driven health data sharing requires industry cooperation, not just technology

Intersecting trends are making the timing right for patient-driven health information exchange, according to a perspective article published in The New England Journal of Medicine by authors Kenneth Mandl, M.D., and Isaac S. Kohane, M.D.

Efforts to create patient-controlled online data vaults go back as far as 1994, yet efforts such as GoogleHealth and Microsoft HealthVault failed. HIPAA, which contains provisions to provide patients with their health data, is one of the most-cited reasons for not doing so, say Mandl, who serves as director of the computational health informatics program at Harvard Medical School (HMS), and Kohane, the Lawrence J. Henderson professor of pediatrics and health sciences and Technology at HMS.

They say the Meaningful Use program would have been more successful had it rewarded clinicians for storing data in patient-controlled repositories rather than in individual electronic health records. They also criticize providers' patient portals as merely offering a subset of the complete record.

Risk-based contracting that requires doctors to have a more complete view of patient history, as well as efforts such as President Barack Obama's Precision Medicine Initiative, are helping to break down barriers to patient-controlled data for care coordination and clinical trials. Consumers are demanding that their data be made available and sharable.

Mandl and Kohane point to the OpenNotes movement as an example of this.

"The requisite technology is no longer mysterious or expensive; it's a set of commodity-level toolkits for data exposure, transfer, and storage," they said. "Successful translation of these technologies into a productive health information economy awaits only cooperation from data producers and purveyors."

Despite efforts to provide patients with their health records, 53 percent of respondents to a recent survey say they have no online access to that information. Thirty-two percent say they have difficulty gaining access to their records at all.

A $10 million infusion of cash is aimed at expanding the OpenNotes program to 50 million patients nationwide. That program, which allows patients access to doctor's notes in their records, must be a physician-driven project to be successful, Michael Pfeffer, CIO at UCLA Health, recently told FierceHealthIT.

To learn more:
- read the NEJM article

Read more on