Session 5: Roles of Consumers, Community & Advocates in Breast Cancer Research
Facilitator: Deb Forter (Massachusetts Breast Cancer Coalition)
- How has consumer input and involvement help to shape the research agenda in the area of breast cancer and the environment? How has their involvement contributed to the science that is being conducted?
- What are the key components to strong collaborations between advocates and scientists?
Key Discussion Points:
- Research to serve the consumer
Advocates encouraged researchers to think about the effects of their research on humans as opposed to mice. The advocate and consumer bring this perspective to the research community.
- The educated consumer
Consumers want to understand research and its implications for their health. Consumers want to be involved and want to be educated. NBCCs Project LEAD (Leadership, Education and Advocacy Development) is a good example of a consumer education program. A collaborative attitude between researcher and consumer is valuable and is facilitated when the consumer is educated.
- The advocate as participant
The advocate can play an important role at all phases of clinical research, including study design, peer-review, outreach, prioritization of research initiatives and goals, and review. Advocate involvement can accelerate the pace of clinical trials and clinical research.
- Diversity in clinical trials and consumer/advocate programs
Nancy Krieger and Carolina Hinestrosa (Nueva Vida) expressed concern about under-representation of specific population subgroups in clinical trials. Minority women and women of low socioeconomic status are underserved in terms of health care delivery and consumer education. These women may be excluded from consumer advocacy and education programs or from clinical trials because they lack time, language skills or other required resources. Efforts should be made to increase involvement and participation of underrepresented patient populations.
- NIEHS COEP program is a good model
Michael Gallo pointed out that NIEHS has an established model for community-based research in its Community Outreach and Engagement Program (COEP). NIEHS Centers use COEP to combine basic research, clinical research, exposure assessment and community outreach and education. The COEP model could be applied in proposed NIEHS Breast Cancer Research Centers.
Communicating the research results to the community was addressed. One suggestion was to incorporate a training component on how to discuss and translate the research information to non-scientists and the lay-people.