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Suggested Citation:"Appendix Workshop Agenda." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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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

Suggested Citation:"Appendix Workshop Agenda." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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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

Suggested Citation:"Appendix Workshop Agenda." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
×

 

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

Suggested Citation:"Appendix Workshop Agenda." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
×

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Suggested Citation:"Appendix Workshop Agenda." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
×
Page 91
Suggested Citation:"Appendix Workshop Agenda." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
×
Page 92
Suggested Citation:"Appendix Workshop Agenda." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
×
Page 93
Suggested Citation:"Appendix Workshop Agenda." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
×
Page 94
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The Health Insurance Portability and Accountability Act (HIPAA) of 1996 was enacted to improve the portability and continuity of health insurance; promote medical savings accounts; improve access to long-term care services and coverage; and simplify the administration of health insurance. HIPAA's Administrative Simplification provisions focus on facilitating the electronic exchange of information for financial and administrative functions related to patient care. However, the very advances that make it easier to transmit information also present challenges to preserving the confidentiality of potentially sensitive personal information contained in medical records. In 2003, the President's Cancer Panel discovered HIPAA Privacy Rule slowed research on cancer survivors, as well as causing increased bureaucracy, informed consent problems, and complications for clinical trials. Effect of the HIPAA Privacy Rule on Health Research evaluates the impact of HIPAA provisions and provides guidance to legislators on amendments needed to make this law better serve the interests of cancer survivors and others.

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