Agenda Institute of Medicine Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule

OPEN MEETING Monday, October 1, 2007

Morrison Clark Inn Ruby Room Massachusetts Avenue and 11th Street, N.W. Washington, D.C. 20001

8:00 am   Continental Breakfast

8:30 am    Welcome and Opening Remarks                                                                                                    

                    Lawrence Gostin (Committee Chair)

8:45 am    Historical Overview of the HIPAA privacy rule                                                                                     

                   Marcy Wilder, Hogan & Hartson L.L.P.

                   Wilder's Presentation

9:15 am    Privacy and Protecting the Public’s Health: Key Issues in Practice and Research                        

                   James Hodge, Executive Director, Center for Law and the Public's Health,

                   Johns Hopkins Bloomberg School of Public Health

                   Presentation canceled

10:00 am   Break

10:15 am   Patient Privacy Rights: How to Use Patient Control of Health Information to Create           

                     Digital Superhighway for Research     

                     Deborah C. Peel, MD, Founder and Chair of Patient Privacy Rights

                     Peel's Presentation

10:45 am   Public Perceptions of Privacy and Health Research, Pre-2007                 

                     Alan Westin, Privacy Consulting Group

                    Westin's Presentation

11:15 am   Important considerations in the privacy of health information  

                    Janlori Goldman, Director, Health Privacy Project (No PowerPoint)

12:15 pm    Discussion              

                     Lawrence Gostin, Committee, and guests

12:45 pm    Lunch

1:45 pm      Safeguarding privacy through design of information systems     

                     Stefan Brands, President, Credentica

                     Brands' Presentation

2:15 pm     Implications of the Privacy Rule for Health Services Research        

                    Katherine Kahn, Senior Natural Scientist, RAND, Professor of Medicine, UCLA

                    Kahn's Presentation

2:45 pm     Implications of the Privacy Rule for trialists and academic research 

                    Robert Califf, Vice Chancellor for Clinical Research and Director,       

                    Duke Translational Medicine Institute

                    Califf's Presentation

3:15 pm     Perspectives on Canadian Privacy Protections and informed consent     

                    Frank L. Silver, Professor of Medicine (Neurology), University of Toronto,   

                    Co-PI of the Registry of the Canadian Stroke Network

                    Silver's Presentation

3:45 pm     Break

4:00 pm     Research Privacy under HIPAA and the Common Rule – the need for harmonization       

                    Mark Rothstein, Director, Institute for Bioethics, Health Policy, and Law,     

                    University of Louisville

                    Rothstein's Presentation

4:30 pm    Discussion                   

                   Lawrence Gostin, Committee, and guests

5:30 pm    Adjourn Day 1

OPEN MEETING Tuesday, October 2, 2007

The Keck Center of the National Academies 500 5th Street, NW Room 105 Washington, DC  20001

8:00 am    Continental Breakfast

8:30 am    How the Public and Research Participants See Health Research and Privacy Issues -   

                   A National Survey, 2007    

                   Alan Westin, Privacy Consulting Group

                   Westin's Presentation

9:30 am    National Survey of Epidemiologists on the HIPAA Privacy Rule and its Effects on Health Research                     

                   Roberta Ness, University of Pittsburgh

                   Ness's Presentation

10:00 am   Survey updates            

                    Sarah Greene, HMO Research Network; David Helms, Academy Health; Richard Schilsky             

                     American Society of Clinical Oncology; Raymond Gibbons, American Heart Association

                    Greene's Presentation 

                    Schilsky's Presentation

10:45 am   Break

11:00 am   Health Research and Privacy – the Way Forward   

                     Mark Barnes, St. Jude Children’s Research Hospital  (No PowerPoint)

11:30 pm   Committee Deliberations 

                     Discussion of surveys, draft report outline, potential recommendations, future directions, and  

                     work plans            

                      Lawrence Gostin, Committee, and consultants

12:00 pm   Working Lunch

12:45 pm   CLOSED MEETING

1:00 pm     OPEN MEETING

2:45 pm    Continued deliberations

3:00 pm    Concluding Remarks      

                    Lawrence Gostin

Adjourn Day 2