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
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8:15 am |
Welcome, Opening Remarks Harold Moses |
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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 |
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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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Raising Public Awareness of the Importance of Health Privacy Paul Feldman, Deputy Director and Manager, DC Office, Health Privacy Project |
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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 |
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10:20 am |
Break |
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10:30 am |
Academic Health Center Research Impacts of the Privacy Rule Joanne Pollak, General Counsel and Vice President, Johns Hopkins Health System |
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Privacy Rule Impact on Pharmaceutical Company Research Donna Boswell, Partner, Hogan and Hartson, DC, PhRMA Representative for the Privacy Rule |
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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 |
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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) |
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12:15 pm |
Working Lunch |
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NIH Perspective: Questions about the Impact of the Privacy Rule on NIH Supported Research Sarah Carr, Senior Advisor, Office of Science Policy, NIH |
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Patient Advocacy Perspectives: Importance of Balancing Privacy Protections and Research Data Sharing in Advancing Public Health Paula Kim, President, Translating Research Across Communities Network |
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Other Advocate Comments Mary Lou Smith, Y-Me Breast Cancer Organization and Co-Founder Research Advocacy Network |
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1:00 pm |
Impact of the Privacy Rule on Health Services Research Carol Stocks, Assistant Data Coordinator, AHRQ |
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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 |
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And Further Discussion |
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2:15 pm |
Concluding Remarks and Adjourn Workshop |
