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Appendix Workshop Agenda
Pages 91-94

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From page 91...
... Appendix WorkshopAgenda 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 Priacy, 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 adising on the Priacy Rule, DHHS
From page 92...
... EFFECT OF THE HIPAA PRIVACY RULE ON HEALTH RESEARCH Raising Public Awareness of the Importance of Health Privacy Paul Feldman, Deputy Director and Manager, DC Office, Health Priacy Project 9:55 am Epidemiological Research and the Privacy Rule Roberta Ness, Chair, Epidemiology, Uniersity 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 Representatie for the Priacy Rule Effect of the Privacy Rule on CDC and NCHS Research, Surveillance, and Public Health Programs Ralph Coates, Associate Director for Science, Diision of Cancer Preention and Control, CDC Catharine Burt, Chief Ambulatory Care Statistics Branch, Diision of Health Care Statistics, NCHS Negative Impact of HIPAA on Population-Based Cancer Registry Research Dennis Deapen, Director Los Angeles Cancer Sureillance 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 Adisor, Office of Science Policy, NIH
From page 93...
... APPENDIX A 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 Adocacy 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 Adisory Committee on Human Research Protections And Further Discussion 2:15 pm Concluding Remarks and Adjourn Workshop

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