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101 B.U. L. Rev. 2169 (2021)
Health Data Federalism

handle is hein.journals/bulr101 and id is 2177 raw text is: HEALTH DATA FEDERALISM CRAIG KONNOTH4 ABSTRACT Federalism scholarship abounds on nearly all aspects of healthcare: on the Affordable Care Act, public health powers, licensing, and drug and device regulation. Yet it overlooks a healthcare resource as essential as money or drugs: health data. Individual-level records contain intimate details ofpatients' entire lives and drive their diagnoses, treatments, and billing. Big data drives public health efforts like gun, opioid, and COVID-19 control. And groundbreaking regulation on the question of health data federalism is ongoing. This Article tells this overlooked federalism story. Historically, states took the lead in (1) collecting health data, (2) creating networks to transmit data, and (3) curbing inappropriate data release through privacy law. However, in the last five years, the federal government has intruded into these spaces. But it does not just displace state law. Rather, as part of a general policy in this space that favors private entities, the federal government has shifted control from states to private firms. Federal law now mandates that private contracts displace state law in setting the rules of data collection. The federal government has given private entities a lead in developing data networks by shifting incentives to them from states. And it has favored allowing a private entity to preempt state privacy laws that regulated that very entity and its industry. While health law scholars have considered bilateral tugs-of-war between the federal and state governments in other areas of healthcare, health data federalism shows how a third actor-the private sector-has entered the mix. I explore the problems this raises and offer solutions. The solutions are modeled * Professor of Law, University of Virginia School of Law. My thanks to Carl Coleman, Jessica Clarke, Sharon Jacobs, Dayna Matthew, Neil Siegel, Rabea Benhalim, Abbe Gluck, David Hyman, Aya Gruber, Sharona Hoffman, Sarah Krakoff, Ben Levin, Margot Kaminski, Kristen Madison, Deven McGraw, Helen Norton, Jenn Olivia, Nadav Orian-Peer, Iliana Peters, Arti Rai, Lucia Savage, Frank Pasquale, Mark Squillace, the Colorado Law Works in Progress Series, the Duke Culp Colloquium, the Yale Information Society Project, and the Northeast Health Scholars Workshop, to Kelly Ilseng for Bluebooking, and to Elise Ogden and the staff of the Boston University Law Review for fantastic editorial work. The author worked with the Department of Health and Human Services on health data regulation in early 2017, pursuant to an October 2016 Intergovernmental Personnel Act Agreement. This Article does not rely on any information obtained in the course of that employment. Apart from minor updates, the claims made in this Article rely on research and data current as of the spring of 2021. 2169

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