Abstract

Growing pressure on the health sector to increase quality of care, improve outcomes, and reduce costs is driving industry toward widespread adoption of electronic health records, the sharing of patient information electronically, and storage of information in the cloud.  Public Health and scientific researchers are also anxious to gain access to these potential new sources of data to map population health trends, understand disease processes, and produce scientific evidence of effective interventions. However, if patients are not confident that the mechanisms by which doctors or researchers collect, use, and share personal health information are respectful of their privacy, they may not be candid about their physical and behavioral symptoms, lifestyle choices, or other social determinants of health.  Candor about these intimate details, willingness to submit oneself to examination, and recording of data are necessary precedents to maintenance of the individual's health, but without these, the public health is also at increased risk.

What types of mechanisms are being considered or should be implemented to increase trust in the expanding electronic health care and health research environment?  We will explore computational, ethical, and policy issues that arise from several mechanisms proposed by HHS advisory committees and industry.

Speaker

Maya Bernstein has been the Privacy Advocate of HHS for nine years.  She is the senior advisor on privacy policy in the Office of the Secretary.  Her portfolio includes a wide variety of policy matters including health IT, genetic discrimination, family and child welfare, drug abuse and mental health records, prescription drug surveillance, research on human subjects, statistical confidentiality, controlled unclassified information, cybersecurity, emergency preparedness and personnel security.  She represents HHS on the government-wide Privacy Committee, chairs HHS' Privacy Committee, and serves on its Privacy Incident Response Team.  She also represented HHS on the White House task force that produced President Obama's Consumer Privacy Bill of Rights.

After earning her law degree, Maya clerked for the Honorable Vanessa Ruiz at the D.C. Court of Appeals, and was briefly engaged in the private practice of law until returning to federal service in 2003 as the Privacy Advocate of the Internal Revenue Service.

Ms. Bernstein earned a Bachelor of Arts at the University of Michigan, Ann Arbor, dropped out of the graduate program in Science, Technology, and Society at MIT to pursue the life of a policy wonk in DC, and earned her J.D. at American University.

About the WATCH series:

Transforming today's trusted but untrustworthy cyberinfrastructure into one that can meet society's growing demands requires both technical advances and improved understanding of how people and organizations of many backgrounds perceive, decide to adopt, and  actually use technology. WATCH aims to provide thought-provoking talks by innovative thinkers with ideas that illuminate these challenges and provide signposts toward solutions. The series is jointly organized by NSF's Computer Science and Engineering (CISE) and Social, Behavioral, and Economic (SBE) Directorates and sponsored by the CISE Secure and Trustworthy Cyberspace (SaTC) Program. Talks will be recorded and made available over the Internet.

About NSF
The National Science Foundation (NSF) is an independent federal agency that supports fundamental research and education across all fields of science and engineering. In fiscal year (FY) 2009, its budget is $9.5 billion, which includes $3.0 billion provided through the American Recovery and Reinvestment Act. NSF funds reach all 50 states through grants to over 1,900 universities and institutions. Each year, NSF receives about 44,400 competitive requests for funding, and makes over 11,500 new funding awards.MORE