Conference Proceedings
“Twenty-five years ago the Health Advocacy Program was started by hospital-based advocates who believed that pro- moting and protecting patients’ rights was a serious business deserving of serious professional study,” said Marsha Hurst, Director of Sarah Lawrence College’s master’s program in Health Advocacy, in her opening remarks. “We are here with a similar purpose: to promote and protect the rights of re- search subjects and—in a larger vision—to strengthen our voice as advocates for all, including ourselves, who depend on the results of research to live healthier lives. This, too, is a serious business deserving of substantive study, serious discussion, and continuing professional education.”
On January 14, 2005, in celebration of its 25th year, the Health Advocacy Program at Sarah Lawrence College spon- sored a national conference, “Health Advocates in Research.” The conference goals were to consider two central questions:
- What are the roles of health advocates in research and what should these roles be?
- What ethical principles should guide our participa- tion in research?
Participants attended lectures and presentations at morning and afternoon plenary sessions, and breakout discussion groups. The Conference provided the opportunity for a di- verse group of advocates—including students, researchers, academics, representatives from public and private organizations, and leaders of both grassroots and professional advocacy groups—to discuss the differences among their fields of interest, and how they might make use of these differences to collaborate most effectively to achieve shared goals. The conference encouraged dialogue about medical research issues and about what steps might be collectively taken after the conference. It promoted the formation of valuable connections among advocates and the develop- ment of shared ideas about–the role of health advocacy in research.
Major themes and issues presented for discussion in- cluded: community participation in research advocacy andclinical trials; ethics and conflicts of interest—particularly with respect to corporate and institutional funding; prin- ciples of truth-telling and transparency in advocacy in research; how advocates influence research at each stage of the process; cooperation and competition among advocacy groups; and responsibilities of advocacy groups to their constituencies and to the larger society.