Major Findings
The CBCRP CRC Awards have empowered the women most affected by breast cancer to participate as full partners in the research process. Making communities affected by breast cancer equal partners in research opens up new questions that might not otherwise get studied. Because collaborative research can be time-consuming and complex, the program can be improved to make it more user-friendly for both research scientists and women affected by breast cancer who are new to research.
Successes:
- The CBCRP CRC Awards have given communities of women affected by breast cancer the power to formulate and initiate research projects addressing questions of concern to them. The majority of the community members who collaborated on the research were breast cancer survivors.
- The CBCRP supported several research partnerships in re-designing their studies and re-application. This is a much needed service component when introducing non-research communities into the research milieu.
- The CBCRP facilitated relationships between community groups and some of the most committed, community-sensitive academic researchers in California. The researchers’ choices of research questions, methods, and implementation made clear the importance of the collaborations.
Spurring Research with Under-Studied Population Groups
The CBCRP’s Community Research Collaboration Awards spurred breast cancer research with populations not often so included, such as:
- disabled women
- rural women
- lesbians
- women of Samoan heritage
- women of Korean heritage
- women of Hmong heritage
- immigrant women from Guam
- deaf and hard-of-hearing women
Areas for Improvement
- Community groups are at a distinct disadvantage when trying to understand the policies and procedures of a research funding institution. In the nine studies evaluated, community groups were not able to consistently participate as truly equal partners, often due to the lack of information and experience with research and with research funding procedures. The CBCRP should take the initiative to increase communication with the funded partnerships including creating more opportunities for the teams collaborating on research to learn from each other.
- Funding limits and delays, as well as the timing of applications and awards, make continuity difficult for the community-academic collaborations. Research partners have to expend energy that could be better used on the collaborative research trying to fill funding gaps and ensure data completion for future grant applications.
- Funding service delivery during or after the awards would support the community agency’s involvement in the research study and ensure a continuity of services to clients.
- Grant awards should be larger to accommodate additional costs associated with community collaboration research.
Other Findings
Goal: Empowering women affected by breast cancer to initiate
research projects that concern them.
Finding: Of the nine projects evaluated, members of a community
affected by breast cancer initiated the research and actively sought out
academic collaborators in six of the research projects. An academic researcher
initiated one project; two teams had worked together before.
Goal: Community collaboration research should give communities
tools they need to create social and political change.
Finding: All of the members of communities affected by
breast cancer who collaborated on CRC research mentioned actions that they
believed could result from their research. These included the following:
- policy changes
- improved provider training
- media attention to the issue
- improvements in state-of-the-art treatment and provider best practices
- assistance in raising funds for services
- further support for research collaborations
- increased quality of care
Goal: Developing the research skills of women affected
by breast cancer.
Finding:
- All of the collaborations included community members who either had the demographic characteristics of those being studied (race, sexual orientation) or were breast cancer survivors. None had formal research experience. All community members expressed an increase in their understanding of research methods through their involvement in the project and a desire to continue using that knowledge to further their community’s involvement in research.
- Many of the projects had at least one community member who had some clinical training (nurse, social worker, physical therapist, clinical psychologist, physician) or who was involved in providing services in their organization. Having some level of familiarity with medical terms and research concepts brought expertise to the collaboration. Some also expressed unintended positive effects on their clinical practices and lives.
Goal: Maximum participation of the community under study.
Finding: Although the research teams all included people
who worked with or were members of the communities being studied, the research
projects were weakest on wider community participation.
- Four out of nine projects included the community with activities such as community meetings; meeting with core groups of community members over an extended period of time; and having clients provide feedback on the proposal, research methods, and tools.
- Most of the teams discussed pulling together advisory groups to review the interpretation or analysis of the research results. Two teams felt that they didn’t involve the community in the analysis as well as they should have. Of those teams who did share the results with members of the community, most shared the analysis and asked for feedback, rather than sharing the data and seeing what analysis the community members would suggest.
Goal: Sharing of power between academic and community
researchers.
Finding:
- All projects had a clear plan for resolving differences. Some of those plans were relatively informal (“We agreed to talk through any problems”), and some were formal (“We included an arbitrator in the grant budget”). Some of the projects decided to divide areas of responsibility — the academic principal investigator was responsible for the research and the community principal investigator was responsible for the community involvement. Others said conflicts did not arise because of mutual respect for what each partner brought to the team.
- Community partners that had more than one community member on the research team felt it balanced the power of the academic researcher, and, often, the academic institution. Those research teams who had disputes that were addressed within the study period succeeded in working out their differences,with one exception.
- Data ownership and dissemination of the results varied. In some of the projects the community group and the academic researcher co-owned the data. In others, the academic researcher maintained ownership of the data and the community group kept a product, such as a workbook, developed during the study.
- Many of the collaborations did not have explicit agreements for the dissemination of study results. They did not discuss in advance questions such as whether the focus would be community or academic conference presentations, or published articles, and if articles were published, who would be listed as co-authors. For the most part, the academic partner developed the article and/or presentation and the community partner reviewed the work and gave input. Some teams worked more closely than others.
