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Databite No. 36: Frank Pasquale

Balancing Privacy Obligations and Research Aims in a Learning Health Care System


May 7, 2015 - 12:00 pm

Data & Society
36 West 20th Street, 11th Floor
New York, NY, 10011

Databites are Data & Society's weekly lunch conversations focused on unresolved questions and timely topics of interest to our community. To request an invitation, please email events at data society dot net.

Frank Pasquale on Balancing Privacy Obligations and Research Aims in a Learning Health Care System:

Health information technology can save lives, cut costs, and expand access to care. But its full promise will only be realized if policymakers broker a “grand bargain” between providers, patients, and administrative agencies. In exchange for subsidizing systems designed to protect intellectual property and secure personally identifiable information, health regulators should have full access to key data those systems collect (once properly anonymized). Moreover, patients deserve to be able to channel certain information flows and gain some basic controls over the presentation, disclosure, and redisclosure of sensitive information. This talk will describe and examine some legal and technical infrastructure designed to help realize these goals.

Background papers:
Consumer Consent Options for Electronic Health Information Exchange: Policy Considerations and Analysis
Grand Bargains for Big Data: The Emerging Law of Health Information