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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
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
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

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