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Appendix
Workshop Agenda

Institute of Medicine

National Cancer Policy Forum

The Keck Center of the National Academies

500 5th Street, NW

Keck 201

Washington, D.C. 20001

June 16, 2006

8:15 am

Welcome, Opening Remarks

Harold Moses

8:30 am

HIPAA Privacy Rule and Health Research Discussion Information on the Privacy Rule and Health Research from the DHHS Office for Civil Rights

Susan McAndrew, Acting Deputy Director for Health Information Privacy, OCR

9:00 am

Writing the Privacy Rule in DHHS

Marcy Wilder, Partner, Hogan and Hartson, DC, Former Deputy General Counsel and leader of the legal team advising on the Privacy Rule, DHHS



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OCR for page 91
Effect of the Hipaa Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum Appendix Workshop Agenda Institute of Medicine National Cancer Policy Forum The Keck Center of the National Academies 500 5th Street, NW Keck 201 Washington, D.C. 20001 June 16, 2006 8:15 am Welcome, Opening Remarks Harold Moses 8:30 am HIPAA Privacy Rule and Health Research Discussion Information on the Privacy Rule and Health Research from the DHHS Office for Civil Rights Susan McAndrew, Acting Deputy Director for Health Information Privacy, OCR 9:00 am Writing the Privacy Rule in DHHS Marcy Wilder, Partner, Hogan and Hartson, DC, Former Deputy General Counsel and leader of the legal team advising on the Privacy Rule, DHHS

OCR for page 91
Effect of the Hipaa Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum   Raising Public Awareness of the Importance of Health Privacy Paul Feldman, Deputy Director and Manager, DC Office, Health Privacy Project 9:55 am Epidemiological Research and the Privacy Rule Roberta Ness, Chair, Epidemiology, University of Pittsburgh Graduate School of Public Health, Director of Cancer Epidemiology, Pittsburgh Cancer Institute, Chair, Policy Committee, American College of Epidemiology 10:20 am Break 10:30 am Academic Health Center Research Impacts of the Privacy Rule Joanne Pollak, General Counsel and Vice President, Johns Hopkins Health System   Privacy Rule Impact on Pharmaceutical Company Research Donna Boswell, Partner, Hogan and Hartson, DC, PhRMA Representative for the Privacy Rule   Effect of the Privacy Rule on CDC and NCHS Research, Surveillance, and Public Health Programs Ralph Coates, Associate Director for Science, Division of Cancer Prevention and Control, CDC Catharine Burt, Chief Ambulatory Care Statistics Branch, Division of Health Care Statistics, NCHS   Negative Impact of HIPAA on Population-Based Cancer Registry Research Dennis Deapen, Director Los Angeles Cancer Surveillance Program and Professor of Medicine, USC (read into the record) 12:15 pm Working Lunch   NIH Perspective: Questions about the Impact of the Privacy Rule on NIH Supported Research Sarah Carr, Senior Advisor, Office of Science Policy, NIH

OCR for page 91
Effect of the Hipaa Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum   Patient Advocacy Perspectives: Importance of Balancing Privacy Protections and Research Data Sharing in Advancing Public Health Paula Kim, President, Translating Research Across Communities Network   Other Advocate Comments Mary Lou Smith, Y-Me Breast Cancer Organization and Co-Founder Research Advocacy Network 1:00 pm Impact of the Privacy Rule on Health Services Research Carol Stocks, Assistant Data Coordinator, AHRQ   SACHRP Recommendations for Changes in the Privacy Rule Regarding Health Research Mark Barnes, Partner, Ropes and Gray, NY, Former Member Secretary’s Advisory Committee on Human Research Protections   And Further Discussion 2:15 pm Concluding Remarks and Adjourn Workshop

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