Health care data as a public utility: how do we get there?

Mohit Kaushal and Margaret Darling at Brookings: “Forty-six million Americans use mobile fitness and health apps. Over half of providers serving Medicare or Medicaid patients are using electronic health records (EHRs). Despite such advances and proliferation of health data and its collection, we are not yet on an inevitable path to unleashing the often-promisedpower of data” because data remain proprietary and fragmented among insurers, providers, health record companies, government agencies, and researchers.

Despite the technological integration seen in banking and other industries, health care data has remained scattered and inaccessible. EHRs remain fragmented among 861 distinct ambulatory vendors and 277 inpatient vendors as of 2013. Similarly, insurance claims are stored in the databases of insurers, and information about public health—including information about the social determinants of health, such as housing, food security, safety, and education—is often kept in databases belonging to various governmental agencies. These silos wouldn’t necessarily be a problem, except for the lack of interoperability that has long plagued the health care industry.

For this reason, many are reconsidering if health care data is a public good, provided to all members of the public without profit. This idea is not new. In fact, the Institute of Medicine established the Roundtable on Value and Science-Driven Healthcare, citing that:

“A significant challenge to progress resides in the barriers and restrictions that derive from the treatment of medical care data as a proprietary commodity by the organizations involved. Even clinical research and medical care data developed with public funds are often not available for broader analysis and insights. Broader access and use of healthcare data for new insights require not only fostering data system reliability and interoperability but also addressing the matter of individual data ownership and the extent to which data central to progress in health and health care should constitute a public good.”

Indeed, publicly available health care data holds the potential to unlock many innovations, much like what public goods have done in other industries. As publicly available weather data has shown, the public utility of open access information is not only good for consumers, itis good for businesses…(More)”