Aggregate health data in the United States: Steps toward a public good

Abstract

The rise of electronic medical records promotes the collection and aggregation of medical data. These data have tremendous potential utility for health policy and public health; yet there are gaps in the scholarly literature. No articles in the medical or legal literature have mapped the “information flows” from patient to database, and commentary has focused more on privacy than on data’s social value and incentives for production. Utilizing short case studies of data flows, I show that ample data exist, much of them are available online through government websites or hospital trade associations. However, available information comes from billing records rather than medical records. Turning to legal and policy recommendations for better provision, I note that weak intellectual property law has ironically led to stronger control over health data through private contracts and technological barriers, as these methods of protection lack any exceptions for noncommercial use. I conclude with a series of policy proposals to make data more available.