Findings

We asked respondents to address four specific aspects of participatory research: the collaboration and application process, the purpose of the research, the involvement of the target community, and explicit agreements to resolve differences. The collaborations varied greatly in each of these four critical areas.

1. Description of the Collaboration in the Application Process.

A key element in Participatory Research (PR) is the origin or development of the research question (Hagey, 1997; George & Green, 1998-99). While the CRC Awards are intended to ensure that communities impacted by breast cancer can initiate research projects that concerns them, researchers based in academic settings may also initiate the collaborations. However, the research question must be shown to be of importance to the community. Of the nine research projects covered by this evaluation:

  1. Members of the affected community initiated six of the collaborations by developing the question(s) for research and actively seeking out academic collaborators prior to submission of the grant application;
  2. Two projects consisted of teams who had worked together prior to applying for funding. One of those teams had received previous research funding; the other had worked together without funding;
  3. An academic researcher initiated one of the projects. The community partner she had chosen to work with, however, had already seen the application and was concurrently looking for an academic researcher.

Three community collaborators described their involvement in the CRCs:

“I actually started to apply three times. The first time was when I was still in treatment for breast cancer. I went to the research symposium in Sacramento. I was really interested in the CRCs. I realized that for me the most important thing during my treatment was the peer navigator. I knew that I wasn't ready for a support group, but I wanted to speak to someone who had been there and done that. The information I was getting from physicians was so conflicting.”

—Community Collaborator

“It was my idea. We saw that women with cancer were having difficulty getting benefits, and dealing with housing and employment discrimination. We were wondering how come some women did really well and others didn't.”

—Community Collaborator

“I was the one who took it upon myself to find an epidemiologist. I made many, many phone calls. It was no small task. Lots of dead ends. Then I spoke with a doctor who thought he knew someone who would work with us. She was a former student of his. She wanted us to come with our own questions. She told us to meet weekly. She gave us epi journals to read. Two of the four community women had some medical background. We did a lot of reading on the current research.”

—Community Collaborator

2. Purpose of the Research

Tools for Social/Political Change. PR differs from traditional research in that the goal is not only to answer questions but also to give communities the tools they need to create social and political change. Those tools can include the results of the research, which can be used to impact policy, or the development of research skills within a community, which can then produce more independent researchers. Conducting research should therefore provide individuals and communities with opportunities for education and empowerment. The results should also be useful for improving the lives and life conditions of the community being researched (Roe, 1995).

All of the community collaborators mentioned actions that they believed could result from their research. These included:

Developing Community Members' Research Skills. Another component of PR is the development of research skills among community members. 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, although almost all of the projects included in this evaluation 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. Therefore, those community researchers with some level of familiarity of medical/health terms and research concepts brought expertise to the collaboration that went beyond knowledge of the community or access to the research subjects. 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. Some also expressed unintended positive effects on their clinical practices and lives, as exemplified by the following quote:

“I was trained as a clinician many years ago, so I had some training in research but it was not functional. I felt privileged to be a part of this research team; I was learning something new. A tremendous amount changed in my knowledge and use of research from the simple technical level — how do you do assessments —to a broader theoretical understanding about how I think about what I am doing as a clinician. I've had various success and failure with clients over time. This experience has given me a team to talk to, the ability and awareness to do literature searches, to dig more deeply into my clinical practice.”

—Community Collaborator

3. Involvement of the Target Community.

Research has often been considered the domain of trained professionals. Concerns over scientific rigor are often used to create a hierarchy, with the academic researcher maintaining total control of research methods (Wing, 1998). However, decisions about how the research gets done—who is researched, how they are researched, where they are researched—have tremendous impact not only on whether the research has validity within the community being researched, but also on the science (Brown, 1992). True collaboration between community members and academic researchers is a hallmark of PR and is considered essential when the study and the interpretation of findings are important to all involved. Researchers face the challenge of designing models for collaboration that maximize the potential for community participation (Hatch, 1993). One academic researcher described a particular challenge for her collaboration:

“We had two problems with the community. One was the informed consent process. Our institution has a rigid informed consent statement that has to be used. There was no leeway to reword it, but the community wanted to. They felt the consent form would be upsetting to the women. After quite a bit of talking we achieved a compromise—we printed the consent form on lavender paper. They are very oriented toward color and aesthetics. We would never have thought of that.”

—Academic Collaborator

The collaborations we evaluated were weakest in community involvement in the research design, implementation, and analysis of data.. Four groups reported intensive community involvement beyond those community members who were active collaborators on the research team. This involvement included holding community meetings; meeting with core groups of community members over an extended period of time; and having clients review the proposal, research methods and tools to provide feedback. For those projects with minimal community involvement outside of the collaborators, the three most common reasons given were:

One researcher describes an informal method of community involvement:

“Involvement of members of the target community wasn't formal because we are a part of the target community. We did a number of things and then we ran ideas past other people in the community to make sure we didn't have too narrow of a focus. She had folks at her organization and I had friends and colleagues.”

—Academic Collaborator

Most of the teams discussed pulling together advisory groups to review the interpretation or analysis of the research results. Two teams felt that the community was not as involved in the analysis as it should have been. Of those teams who did share the results with members of the community, most shared the analysis and asked for feedback, rather then sharing the data and seeing what analysis the community members would suggest.

“We talked about the analysis with the community advisory board to figure out whether our interpretation was the same as theirs. But, sometimes it's better to not give your interpretation first. That's what I'm going to do next time—show people the data and then let them give an interpretation first. You get multiple views on the same truth and it may represent the community better.”

—Academic Collaborator

The written application proposals of the nine funded projects varied greatly in their descriptions of community involvement. While the Collaborative Elements account for 50% of the total possible score for the proposal, out of a total of five pages for each proposal, the discussion of collaboration ranged from a minimum of one paragraph to a maximum of one page. The proposals had an average of 11 letters of support, with the range from four to 20 letters. One application included seven letters of support, but they were all from individuals and organizations that were part of the research team. The applications provided minimal evidence of true community involvement.

4. Explicit Agreements to Resolve Differences.

When community members work with traditional academic researchers, both parties need to understand the inherent power dynamics (Hagey, 1997). Power dynamics become complicated as the collaboration brings participants' very different goals into play. For the community, the primary goal is often some form of action (more or better services, changes in policies). For the academic researcher, the primary goal is knowledge and understanding (Hatch, 1993; Perkins and Wandersman, 1990). For the community to benefit from the research, it is essential that the partnership set up conditions for the collaboration and keep both community participants and academic researchers in control (Hall, 1992.) A healthy collaboration requires clearly defined roles and responsibilities, as well as the flexibility to re-negotiate those roles and responsibilities (Schensul, 1999).

All of those interviewed expressed 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.

Those community collaborators who actually worked in a team of community members felt that having more than one community member was important to balance the power of the academic researcher, and, often, the academic institution. Those who had disputes that were addressed within the study period succeeded in working out their differences. Disagreements that did not get resolved prior to the completion of the study did occur within at least one group. The following reflects two views on conflict resolution within the collaborations:

“How we resolved one conflict is we sat down and talked about the pros and cons of the two options. Everyone felt strongly. We decided to have a six-month trial with parameters.”

—Community Collaborator

“It has required a lot of compromising on everyone's part. My job is to maintain the scientific rigorness of the study. I've needed to be the heavy and have felt the heat of this role. We have discussions. They at first don't understand. They think about it some more. They come around to realizing the study will be more sound. When they don't accept what I say I get consultation to check out whether I'm correct. We've evolved this process over time.”

—Academic Collaborator

All research projects included members of the community being studied as community collaborators. Some of the traditional researchers were also members of the communities being studied. Community participation ranged from community collaborators being members of the research team, at minimum, to patient-heavy Community Advisory Boards and community meetings where the research teams discussed the project and solicited input. One community collaborator described how her team involved the community in the research:

“Four of us were members of the non-profit organization we submitted the application under. We attended monthly board meetings to inform the organization about what direction the research was going. We held monthly forums at a centrally-located hospital to get input from the community. Mostly breast cancer activists attended, plus some men (there was a prostate cancer support group during the week at the same facility.) We would invite speakers, but before the speakers spoke, we would update people on the grant application and, once funded, on the progress of the research.”

—Community Collaborator

Data ownership and dissemination of the results varied. Some of the projects agreed to co-own the data between the community group and the academic researcher. In other cases, the academic researcher maintained ownership of the data and the community group kept a product, such as a workbook, that was 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 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. One academic collaborator described a creative way they presented data to the community:

“One thing that came across quite clearly from the community was that so many researchers come into the community and research them but don't come back to them with the results. We heard that a lot. One strategy that we have now is to make special community-based presentations. We also make sure the community knows that they have access to the research institution and the community-based organization and the data. If they want to do some research on their own they have that opportunity.”

—Academic Collaborator