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Benedicte Callan – Data Collection and Data Mining in Health: The Clash of Privacy and Innovation

Thursday, March 1, 2012
7:30 am


Sherrerd Hall, 3rd floor open space
Princeton, NJ 08544 United States + Google Map

Food and discussion begins at 12:30 pm. Everyone invited.

In an idealistic future scenario the reform of our health care system is built on the ability to collect and analyze personal health data from various sources, including electronic health records and clinical trial data. Data driven health care holds out tantalizing promises: the acceleration of basic science, the development of models that aid the translation of discovery into new products, new approaches to clinical trials, earlier identification of adverse events for marketed health products, better healthcare through easier access to complete health records by physicians, comparative effectiveness studies that help health care providers payers identify best practices.

The vision is a compelling one. The US government has launched a number of important programs that are trying to nudge, and sometimes push, our biomedical research and health care system into the age of big data, including the 2009 Recovery act which provided $29 billion for the adoption of electronic health systems, the creation of the FDA’s Sentinel System, and countless programs and regulations promoting open science practices. There are also enormous commercial incentives to access personal health data, which technically have to be deidentified.

The promise of health data clashes however, with existing notions of privacy of personal information. The issue is goes far beyond the increasingly common security breaches for health data. The question is whether the institutional foundations on which the privacy of personal information is based can be tailored to a world where health data is used multiple times, for multiple purposes by multiple players and where, when aggregated, it has financial value. In this talk, I will present (1) why health data has value and who is interested in using it, (2) how health data privacy is currently protected and where the system is failing, and (3) where the political battles over health data are being fought.


Benedicte Callan is a Sid Richardson Fellow for innovation and health policy at the LBJ School of Public Affairs at University of Texas, Austin. Previously, Callan worked for 12 years at the Organization of Economic Cooperation and Development (OECD) where she served in a number of capacities, most recently as Head of the Biotechnology Unit which focuses on the development and diffusion of innovative biotechnologies in a broad range of industrial sectors. She has also been Principal Administrator for Health, Executive Assistant to the Deputy Secretary General charged with overseeing OECD work on development and the environment, and an Administrator for science and technology policy. At the OECD, Callan gained practical experience in building international consensus on good policy practice in a broad range of science, innovation and economic policy issues.

Benedicte Callan