Evans Proposes 21st-century Governance Model for Health Data

Barbara Evans
Tuesday, May 30, 2017

A new article in the American Journal of Law & Medicine by Consortium collaborator Barbara J. Evans, MS, JD, LLM, expands on ideas she shared at last December's forum, "How Patients Are Creating Medicine's Future." "Barbarians at the Gate: Consumer-Driven Health Data Commons and the Transformation of Citizen Science" draws on past citizen science efforts; empirical research such as the Health Data Exploration Project; guidelines like the Common Rule and HIPAA; and property law. Evans argues that laypeople who work together to assemble datasets could serve research and health care needs better than the current system. She notes: "The aim of consumer-driven data commons is to allow consenting groups of individuals to assemble datasets on a meaningful scale, empowering themselves through collective action to exercise greater control over the fate of their data than individuals can achieve acting alone." Evans also discusses the opportunity presented because "new forms of [personal health data (PHD)], such as data from mobile and wearable sensing devices, are generally not regulated by the Common Rule and HIPAA Privacy Rule. This regulatory gap offers an opportunity to design a new PHD privacy and access models on a blank slate, perhaps avoiding pitfalls of existing regulations." A PDF of the article is available here.