Patient Data: Property, Privacy & the Public Interest

Abstract

I argue that treating patient data as private property precludes forming comprehensive databases required for many of its most important public health and safety uses. Private ownership will also allow data monopolies that will increase the price of data and limit competition in the market for derived services. I propose that federal law require providers, medical facilities and insurers to report key patient data in anonymized and de-identified form to public authorities, which will create aggregate data bases to promote public health, patient safety, and research. Public authorities should also make this data available for private entities to develop data-derived services, subject to public oversight.

My proposal faces two important challenges. First, prevailing American thought favors private ownership and markets and a minimum role for the federal and state governments. I argue, however, that the economic, legal, and moral reasons typically invoked to justify treating a resource as private property do not support doing so here. There is no need to create private property rights to encourage production of patient data because it already exists. Providers and medical organizations will continue to collect this data in order to perform their work, whether or not they must disclose it, and even if they cannot sell it. Furthermore, public ownership would ensure the aggregation of patient data and promote its beneficial public and private uses. In contrast, private ownership would preclude most public uses and restrict many private uses. Other economic, ethical and legal considerations also favor treating patient data as a public good.

Second, some people believe that public ownership of patient data creates risks for patient privacy. I contend, however, that the risks to privacy are no greater than when the data is private property owned by patients or firms and organizations. Whether publicly or privately owned, we need protective measures to ensure confidentiality. Public ownership, however, allows greater public oversight that can protect patient confidentiality.