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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 92
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 93
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
OCR for page 94
Effect of the Hipaa Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum
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Representative terms from entire chapter:
health research