Why health data ownership is a 'civil right'

The ever-increasing amount of health data collected by a person over time soon will need a home, and that means a need for data management systems that give individuals control over their personal health information, according to Eric Topol, M.D. (pictured), director of the Scripps Translational Science Institute, and Leonard J. Kish of Unpatient.org.

"It is critical for individuals to seize ownership of their data in order for the real benefits of a new, data-driven high-definition era of medicine to be actualized," they write in the journal Nature Biotechnology.

Currently, data does not live in one, centralized location, they note; instead, it resides in electronic health records, insurance claims databases, personal health apps and research databases. A platform needs to be developed that can bring all the different data on a patient into one place, they say.

To create this, the authors point to Bitcoin as a model, using block chain technologies, digital wallets and "proof of work" components.

Topol and Kish add that they are coining the term "UnPatient" for the new data ownership model.

"We urgently seek to promote ownership of one's medical data as a civil right and as a pivotal strategy to further digitize medicine," they say. "This is the essence of the benefits of democratization: shared control provides shared benefits at an exponential rate. When individuals inform the collective, and the collective informs the individual, we will have the learning health system we seek."

Topol and Kish aren't the only ones in the industry pushing for patient access to their data. Former National Coordinator for Health IT Farzad Mostashari also has an initiative under way called "Get My Health Data."

"We believe that right now is the moment when patient demand for their records will be the 'unknotter' of the problem that we have--of the lack of access for patients to take their data and do what they want with it," Mostashari said in June during the Health Datapalooza conference in the District of Columbia.

While access to health data is also a priority for the Department of Health and Human Services Office for Civil Rights, according to Deven McGraw, deputy director of the agency's Health Information Privacy Division, she does not believe that ownership of records is relevant to resolving questions over access.

To learn more:
- read Topol's and Kish's post