From Commercialization to Accountability: Responsible Health Data Collection, Use, and Disclosure for the 21st Century

Proposed initiatives in the U.S. that require sharing of clinical health information and facilitate easier access to that information through open, standard digital interfaces raise risks that sensitive information may be shared more broadly outside of legal protections for health data and may be more readily commercialized, in addition to existing commercialization of health data by health care institutions allowed by federal privacy laws. Is commercialization truly health data's "boogeyman" or is the problem the sharing of health data without sufficient protections against harm or inappropriate use? Can privacy risks be mitigated while still enabling value to be gleaned through more widespread sharing of health information? In this editorial, we argue that the focus should not be on whether the entity is or is not currently covered by federal health privacy laws, or whether the data are or are not "commercialized." Instead, U.S. policies and practices should encourage (or outright require) (1) responsible use of data to improve health and health care, (2) greater transparency to and participation by patients and consumers, and (3) controls to minimize harm to individuals and populations.