Rethinking Health Data Privacy

Kaplan, B., Davidson, E.J., Demiris, G., Schreiber, R., Waldman, A.E., "Rethinking Health Data Privacy," Proceedings of the American Medical Informatics Association Annual Symposium, Washington, DC, November 2019

3 Pages Posted: 2 Jan 2020

See all articles by Bonnie Kaplan

Bonnie Kaplan

Yale University

Elizabeth J. Davidson

Shidler College of Business, University of Hawaii Manoa

George Demiris

School of Nursing, University of Pennsylvania

Richard Schreiber

Geisinger Health System & Geisinger Commonwealth School of Medicine

Ari Ezra Waldman

Northeastern University; Princeton University Center for Information Technology Policy

Date Written: February 25, 2019

Abstract

Privacy is protected both ethically and legally as a foundation for creating enough trust during clinical encounters for health care decisions to be based on honest discussion and accurate information exchange. Research, public health surveillance, advances in artificial intelligence (e.g., machine learning and predictive algorithms for health care), and the promise of personalized medicine all depend on accurate, complete data. However, health-related data generated and used outside of clinical settings is not protected through privacy regulation. Data aggregators and companies combine data from multiple sources for health and other purposes, while individual behavioral and social practices are being incorporated into medical records. Meanwhile, boundaries and distinctions are breaking down between different categories of protected health data, and between protected data and data collected via commercial apps and services. Privacy of health-related data requires rethinking in this rapidly changing landscape. Panelists will consider challenges in health data privacy, data governance, and privacy policies and practices, including privacy vs the value of data sharing, the adequacy of current legal and regulatory regimes, and how technological developments affect health data privacy.

Keywords: patient privacy, health data protection, cybersecurity, health care legal, ethical and regulatory

Suggested Citation

Kaplan, Bonnie and Davidson, Elizabeth J. and Demiris, George and Schreiber, Richard and Waldman, Ari Ezra, Rethinking Health Data Privacy (February 25, 2019). Kaplan, B., Davidson, E.J., Demiris, G., Schreiber, R., Waldman, A.E., "Rethinking Health Data Privacy," Proceedings of the American Medical Informatics Association Annual Symposium, Washington, DC, November 2019, Available at SSRN: https://ssrn.com/abstract=3501986

Bonnie Kaplan (Contact Author)

Yale University ( email )

New Haven, CT 06520
United States

Elizabeth J. Davidson

Shidler College of Business, University of Hawaii Manoa ( email )

2404 Maile Way
Honolulu, HI 96822
United States

George Demiris

School of Nursing, University of Pennsylvania ( email )

Philadelphia, PA
United States

Richard Schreiber

Geisinger Health System & Geisinger Commonwealth School of Medicine ( email )

United States

Ari Ezra Waldman

Northeastern University

416 Huntington Avenue
Boston, MA 02115
United States

Princeton University Center for Information Technology Policy ( email )

C231A E-Quad
Olden Street
Princeton, NJ 08540
United States

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