SLC.edu / Graduate Studies / Graduate Programs / Health Advocacy / Conferences / Health Advocates in Research 2005 / Conference Schedule
Conference Schedule
8 a.m. Sign-in; Breakfast 8:45 a.m. Framing of the Day
- Marsha Hurst, Director, Health Advocacy Program, Sarah Lawrence College*
- Gwen Darien, Director, Department of Survivor and Patient Advocacy, american Association for Cancer Research*
9 a.m. From Experience to Advocacy: an introductory session
- Paul Gelsinger, Vice President, Citizens for Responsible Care and Research (CIRCARE)— “Jesse’s Story”
- Adil Shamoo, Professor, University of Maryland School of Medicine; Co-Founder, Citizens for Responsible Care and Research*-- Response
9:45 a.m. Plenary Panel I: Models of Advocacy in Research
An exploration of the many approaches to research advocacy and an examination of their commonalities and differences
Introduction:
- Rachel Grob, Associate Dean of Graduate Studies and Faculty, Health Advocacy Program, Sarah Lawrence College*
Panelists:
- Sallie Bernard, Executive Director, Coalition for Safe Minds; President, ARC Research; Executive Director, New Jersey Cure Autism Now
- Deborah Collyar, President, Patient Advocates In Research and Program Director, SPORE Patient Advocate/Research Team Progra.m.
- Joyce Hunter, Co-Director, Community Collaborative Care, HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute
- Karen Joy Miller, Founder and President, Huntington Breast Cancer Action Coalition
- Susan Matsuko Shinagawa, Community Director, Asian american Network for Cancer Awareness, Research and Training; Co-Founder and Co-Coordinator, Asian Pacific Islander National Cancer Survivors Network
11 a.m. Mid-morning Break
11:15 a.m. Breakout Group Discussion, Session I:
- How do we evaluate the effectiveness of various models of research advocacy?
- Where are the strengths, weaknesses, gaps and overlaps?
- What accounts for differences in approaches and effectiveness?
Discussion Questions – Models of Advocacy and Research>>
12:30 p.m. Networking Lunch
A time for less formal discussion and interchange
1:30 p.m. Plenary Panel II: Ethics of Research in Advocacy
An exploration of the ethical issues that confound us, and the principles that should guide us
Introduction:
- Rebecca Dresser, Professor of Law and Ethics in Medicine, Washington University School of Law*
Panelists:
- Kay Dickersin, Professor, Department of Community Health and Director, U.S. Cochrane Center, Brown University
- Paul Gelsinger, Vice President, Citizens for Responsible Care and Research (CIRCARE)
- Abbey Meyers, President, National Organization for Rare Disorders (NORD)*
- Maryann Napoli, Associate Director, Center for Medical Consumers*
- Barbara Seaman, Women’s health advocate, journalist and author; Co-Founder, National Women's Health Network
3 p.m. Afternoon Break
3:15 p.m. Breakout Group Discussion, Session II
Reflection on ethics and advocacy, formulation of principles and plans for on-going work
Discussion Questions – Ethics of Research in Advocacy>>
4:30 p.m. Pulling It All Together
Reporting back from breakout sessions and plans for the future
- Ngina Lythcott, Vice Dean and Dean of Students, Mailman School of Public Health Columbia University*
- Byllye Avery, Professor, Columbia University; Founder, National Black Women's Health Project