Findings

Each of the projects added valuable knowledge about breast cancer in specific communities. Five of the seven projects arose from underserved populations who are under-represented in research. These populations include rural women, lesbians, Hmong women and men, women with disabilities, and Samoans.

The projects also addressed important questions about risk and causation, health education and service programs. Four of the projects developed and evaluated new programs or services to fill unmet needs; a fifth project compared academic and community models for delivery of support to women with breast cancer. Two projects explored breast cancer risk and causation among specific communities—lesbians and Marin County women. Descriptions of the projects and their research results are provided in Table 2, page 22.

A. Did the CRC Research Increase Knowledge, and Impact Policy, Programs, and Funding?

KNOWLEDGE
All seven teams reported presenting their data at scientific meetings. Six teams reported their data through the media, including two teams to national media. To date, 14 articles have been published in peerreviewed scientific journals by four of the teams, or other researchers, and more articles have been submitted. See Appendix A for a list of published papers related to the projects included in this evaluation.

Four teams presented their data in community forums. Because the research teams included members of the community, the researchers were able to communicate on the communities’ own terms. A research team member from a community-based organization serving a minority group commented,

When we went into the community, we had our research
partners with us. But to ensure that the discussions were well
understood, because many of our traditional leaders have
difficulty in fully understanding terminology, then of course we
took the lead in that.

POLICY
All seven teams reported having some impact on policy or government agencies. The research teams leveraged access to policy makers by:

The ways the CRC research projects had impact in the policy arena included:

HEALTH SERVICES OR EDUCATION PROGRAMS
All seven teams reported impact on health services or health education programs. The types of impact included:

See Appendix B for a list of materials developed related to the projects included in this evaluation.

LEVERAGING ADDITIONAL FUNDING
Six teams said that the results from their studies or their involvement in the research projects helped them to participate in or leverage ten additional breast cancer-related grants, totaling almost $20 million in additional funding. Three teams received four additional grants from the CBCRP for new or related studies totaling $1 million. Two teams received three direct grants totaling under $1 million for additional studies or projects in breast cancer from other funders. Most of the other grants included in the near-$20 million total are being conducted at multiple sites, and the CRC research team only receives a portion of the funding. One team credits the CRC study they conducted with spurring increased federal funding into research in their community:

There had been no federal money that came into [our
community] to do research. And now, since 1997 I can do a
whole timeline of things that have occurred in [our community]
and I certainly would credit it with the beginning of [the organization]
and certainly doing the [CRC study].

B. Did Using Community-based Participatory Research Methods Improve the Quality of the Research?

RECRUITMENT AND RETENTION
Six of the seven teams said that recruitment and retention were positively impacted by the Community-based Participatory Research structure in significant ways. A common response from research teams was that they were able to recruit a large sample, and keep participants involved in the research, because the participants trusted the community-based organization. Community members also worked hard to recruit and retain participants. The collaborative structure of the research improved recruitment and retention in additional ways:

One researcher commented,

I mean, out of 809 people that we recruited basically we lost
two people in nine months, or three people in nine months.
Come on. Tell me any other model that can help you get that
low an attrition…And that was not because people refused.
But people moved or died. And you can’t have that by yourself
without being connected with the community and the
community being in the forefront.

RESEARCH METHODS
Four of the seven teams reported that community involvement significantly improved the development of their research methods, in the following ways:

One team credits community involvement for designing a new research tool that is in use by other researchers.

DATA ANALYSIS
Most research teams did not collaboratively analyze their data, including those teams who collaborated well in other areas. Four teams found little or no benefit to the analysis of data through the collaborative structure. Two teams found minimal benefit and only one team found significant benefit. Two researchers stated that “data is data.” A member of one team commented:

It was more the academic partners that were providing the
leadership for the analysis part of it, whereas the community
partners were providing their perspectives on what the
potential inferences could be.

The team that found the most significant benefit said that community involvement in the data analysis was essential. This was because hidden information about what was happening in the community during different parts of the study—which impacted data collection— would not have been known without community partnership in data analysis. As one member of this team pointed out,

The data doesn’t mean anything unless you put the community
into it [to add] the cultural variations to explain some of the
things we were seeing.

DISSEMINATION
The collaborative structure impacted dissemination of the study results in several ways. All teams reported that both the community partners and the research partners participated, on some level, in the dissemination of study results. Two teams found significant benefit to results dissemination using the ommunity/researcher collaborative process. One of those teams paired widespread community dissemination with extensive scientific dissemination. Four of the teams found considerable benefit, but these teams focused mostly on either community-level or scientific dissemination, but not both. One of these four had minimal scientific dissemination and significant community-level dissemination but did not conduct these activities collaboratively. Finally, one team found collaborating had minimal
impact on dissemination.

One member of a team explained how collaborating on research improved dissemination:

We wanted the results to be more than just data, but to have
some living meaning for the women

C. Did Participating in CRC Research Positively Impact the Community Organization Research Partner and Members of the Community?

BENEFITS TO COMMUNITY-BASED ORGANIZATIONS
Four community-based organizations identified significant benefits from participating in a CRC research project. These agencies became very active in Community-based Participatory Research projects, and their agencies received funding, visibility, and recognition for their work in breast cancer research. Others indicated that their agency received increased visibility or credibility for having participated, and that fundraising was enhanced.

One agency had been a very small organization with a small budget and was able to become more institutionalized because of the funding and the research project. This agency became known in their community for being committed to finding answers to breast cancer through Community-Based Participatory Research. Four communitybased organizations or community members representing the organizations received an award or honor for their work on the research project.

Community-based organizations also cited additional benefits:

IMPORTANCE TO THE COMMUNITY
All seven projects identified ways in which the research question was important to their community. One project attempted to answer a question that had received widespread media coverage as a “crisis” in that community. Another team thought that breast cancer was important to the community but the particular question they attempted to answer—which was developed through team discussions of feasibility as well as community importance—was probably less important to the community. One team reported that the research had empowered the community.

BENEFITS TO MEMBERS OF THE COMMUNITY
Individual community members also benefited from participating on the research team and as research subjects. Research team members reported that they gained greater research and evaluation skills, and greater knowledge of specific aspects of research, such as questionnaire development. Four studies paid research subjects a stipend for participating. Some of the benefits identified by community members who worked on the research team include:

This increase in knowledge and skills has an ongoing effect for those who took part on the CRC research teams, as evidenced by this participant:

I feel, as well as all the community folks feel, that we’re taken
more seriously because we can speak the lingo. We’ve actually
done research. We can go to any conference and we can present,
so we feel we have a greater degree of respect for ourselves as
well as at our agencies. And we’re taken more seriously by
funders, as well as policy makers. Because policy makers are
like, “How do you know it works?” [And we say] “Well here, let
me show you, here we have a journal article, and this and this
and this.” So it just really helped us to understand research and
the importance of it and not to be afraid of it, as well as know
research methods and how to do it and apply it in a community
setting.

INCREASED KNOWLEDGE ABOUT BREAST CANCER IN THE COMMUNITY
Four of the seven teams believed that conducting the study in their community, and reporting back to the community about the study results, significantly increased knowledge in the community about breast cancer. As one participant said,

There isn’t a person in the community who doesn’t know about
the findings…It was on Nightline, it was on Sunday Morning.
It was pretty amazing.

Specific ways the research projects increased community knowledge about breast cancer include:

CONTINUED PARTICIPATION IN COLLABORATIVE RESEARCH
Five of the agencies have continued to participate in Communitybased Participatory Research. One would like to do so, but has not had a chance yet. In another team in which two separate agencies participated, one has continued participating in Community-based Participatory Research, and one has not.

D. Did Participating in CRC Research Positively Impact the Academic Research Partner?

PERSONAL AND PROFESSIONAL BENEFITS TO THE ACADEMIC RESEARCHER
Several academic researchers indicated that using Community-based Participatory Research led to their gaining credibility within the community they researched. They also had a positive experience meeting and working with the team, and had the opportunity to teach and give back to the community. Two researchers noted that they were able to leverage either a new position or additional staff at their universities with the project funds. One gained visibility and recognition, was invited to keynote a conference, was able to keep a research assistant, and was put under consideration for a full professorship. One researcher received an award that was in part a result of the work with the community.

All academic researchers identified some beneficial outcome, such as:

CONTINUED PARTICIPATION IN COLLABORATIVE RESEARCH
All but one of the academic researchers have continued participating in Community-based Participatory Research, either by developing new studies or participating in existing studies. One team’s researchers felt“ leery” of participating in another such project due to conflict among the team at the end of their study. Another researcher spoke of the time and energy commitment to conduct collaborative research and the inherent conflict for new researchers coming into the field:

I knew what it would take to get it done. I personally just tend
to work at an extremely high level of energy. While this project
was going on I also had 8 or 9 other projects going on. I came
in with a lot of community connections and professional
collaboration beforehand. That was able to carry me through
for the publications that were required. And junior folks aren’t
going to have that, and that’s why they suffer for it. And this is
the primary piece—junior faculty of color. Because they’ve got
the community connections, the communities are counting on
them. And that’s often why they go on for their degrees, to do
research in their communities. And then they get caught in
their obligations to the community versus their obligation
academically to maintain their career. And that’s why I think
so few succeed.

INCREASED KNOWLEDGE OF THE ACADEMIC RESEARCHER
Academic researchers gained increased knowledge of the community they studied. They reported gaining an improved understanding of what motivates community members to participate in research, more information about their culture or community values, and a better understanding of community needs and what services are useful. Researchers made the comments below regarding the knowledge they gained about the various communities where they conducted their research:

E. Combined Outcomes
All the outcomes studied were scored for their impact. Figure 1 is a graph showing the combined point totals for each team.

Of all outcomes considered, the areas where participating in CRC research had the most impact were:

Those areas where participating in CRC research had the least consistent impact include:

All seven teams saw positive outcomes from participating in the CRC project. Three teams (C, D, and E) had the most positive outcomes. Their research results were presented to the general public, scientific audiences, and policy makers. Services were developed or improved and additional research has been embarked on. Collaboration made the research much better by improving recruitment/retention of participants and methods development. The communities benefited
through increased visibility of the community-based organization and by getting answers to important questions. The researchers benefited through personal and professional relationships, continuing to participate in Community-based Participatory Research, and increasing their knowledge of the community.