e-book Cancer on the Margins: Method and Meaning in Participatory Research

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In advance of the focus group, participants were asked to review preliminary evaluation findings; during the focus group, they were asked to share their reactions to and interpretations of the findings. The BABCERC Executive Committee met regularly with the evaluation team to provide input on the evaluation, including the design of the instruments, recruitment of respondents, and interpretation of major findings.

The evaluation team reviewed the quantitative results to determine frequencies of responses by type of stakeholder and the extent to which respondents rated the project as more or less participatory. Interviews were analyzed according to a realist approach 18 and guiding principles of CBPR. Data quality was ensured through a continual process of member checking and triangulation. Nine of the twelve interview respondents returned the quantitative rating form.

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The majority of participatory research criteria and guidelines received a high rating by respondents, reflecting a net positive perception of the participatory processes among respondents. A fraction of the responses had an explanation; several were uncertain about whether agreements existed and some said they did not understand the question.

Respondents cited project structure as both a facilitator of and a barrier to community participation. Several discussed the active participation of and funding for COTC members on each of the research project teams as evidence of COTC hence community integration into the research and oversight of the project. The COTC representative brought concerns of diverse constituencies to researchers, participated in the research process, and shared scientific updates with community members.

The … structure is, up front, explicitly designed to involve COTC members in an ongoing way. So in all the working conference calls and meetings and town halls, we hear from … members of the COTC on a regular basis, and they hear about efforts to pull off the science and see it in all its glory and ugliness, you know, and difficulties. Integration of a COTC member into the study teams allowed for the community to provide input into the research. Several researchers and COTC members shared concrete examples of how the COTC and other community members had been involved in shaping the research, such as helping to identify environmental exposures to be included in Project II plans for analysis of the biospecimens.

For example, a COTC member said:. Many respondents spoke about the important role of annual town hall meetings in accomplishing the goals of translation and dissemination in this project. Town hall meetings provided opportunities for researchers—with assistance from the COTC—to communicate findings in ways the lay public could understand. This video was mentioned by several respondents as a key accomplishment toward more effective translation of the research. The process of making this video helped the COTC to understand the science while teaching the scientists how to communicate more effectively with the public.

Some aspects of the project structure, such as budget and timeline, limited full engagement of the community in the research. For example, although there were opportunities for the COTC to attend researcher meetings, there were no similar opportunities for researchers to attend COTC meetings. One participant alluded to the complexities of data collection, particularly when time is short:. Few, if any, written agreements clarified stakeholder roles in research design, implementation, interpretation, translation, and dissemination. Several respondents indicated that the lack of a clear agreement about how dissemination of project findings would happen creates uncertainty about who will be involved, how they will be involved, and what findings will be shared.

One respondent, however, expressed concern that Projects I and II were not intended to adhere to prescribed CBPR standards; therefore, such agreements were neither expected nor necessary and an inappropriate criterion for this evaluation. Several respondents mentioned one written agreement among partners—a protocol for the selection of topics for analysis, publication and authorship.

One respondent described this agreement:. And to set some standards for authorship. This document was developed over a year of discussion with multiple drafts, but not everyone shared the same perception of either the document or its benefits. For example, some respondents felt that comparable, existing agreements had not been implemented to meet expectations nor had they created a clear mechanism for how things would happen e. Differences in the nature of the two scientific projects also contributed to variable community involvement.

Project I, a basic science project, was funded to answer specific questions and to conform to a required research design, so opportunities for meaningful community input into project design were not really possible. Nevertheless, at least one non-research respondent expected to have more meaningful input into Project I than merely participating as a curious audience. From the perspective of one researcher, however, allowing someone with limited scientific expertise to influence basic research might threaten the integrity of the science. But they have to realize the scientific process is restricted for good reason in order to get … the best possible data you can.

Opportunities to influence the research e. The need to collect the same data at subsequent time points, however, meant that the core baseline questionnaire in Project II could not be modified substantially in annual follow-up surveys. Tied to the stage of research are skills need to participate in it. In the above quote, the researcher alludes to the need for advanced training so that participants can understand and contribute, particularly to basic science.

Lack of such training led to the challenge of developing equitable partnerships when community members or their representatives do not have the skills or knowledge needed to participate meaningfully in the research. For example, a COTC member said,. Other respondents felt that not having research capacity might limit the ability of community members to act as full partners, for example, participating in authorship, translation, and dissemination. Respondents discussed the challenge of having partners with different priorities and needs.

Research does not always satisfy this need. A COTC member said,. The challenge is all research takes a long time, and advocates are really impatient. But I do think the benefits outweigh the challenges. Some respondents noted difficulty involving community members in research that may be perceived as not truly benefiting the whole community.

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For example, one community member shared the perception that researchers need to be more understanding of and responsive to the needs of low-income people of color and the uninsured. Respondents also poignantly illustrated the challenge inherent in being involved in research when basic needs, such as health care, were not being met. In addition, community members might not always make the distinction between a researcher and a health care provider, particularly when the researchers come from an institution, such as the University of California at San Francisco, also best known in the community for providing quality medical care.

Communicating across stakeholder groups challenges CBPR, particularly when motivations for being involved vary. For example, community members were generally interested in the practical How can I protect myself and my family? How can I prevent breast cancer? Researchers want to present their research and get directly relevant feedback. One respondent summed it up in this way:. It happens on both sides of the coin. Communication from within these different perspectives could result in resentments, frustrations, and communication challenges across these perspectives, which in this study sometimes played itself out at town hall meetings.

The dispersion of stakeholders across a wide geographic area, such as the three counties in this study, also made communication across boundaries more difficult. One community member said,. Several respondents discussed the legacy of having been repeatedly used by researchers for their own professional gain without ensuring that community members benefit from the research. Several important perceived benefits of community participatory research emerged from the analysis Table 2.

Nearly all respondents spoke about improved communication and mutual learning among the stakeholders. Researchers gained a greater understanding of community concerns and ways to be more responsive to community needs. In this study, researchers gained an appreciation for the knowledge of the literature, expertise, and connection to the community that these stakeholders share. Advocates and activists learned how to creatively communicate the research to the public.

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One respondent described the good faith effort by some of the scientists to make their work more understand-able to the lay person by using less scientific jargon, analogies, and audiovisual aides. Participatory research purportedly enriched the questions asked and interpretations of data, and made the research more responsive to community needs. Examples from this evaluation include the research questions, instruments, plans for analysis of biospecimens, and sharing of findings with the participating community. For example, in Project II, the biospecimen analysis included environmental exposures that were of interest and concern to the community, but also reasonable to measure, given the objectives of the science.

In addition, the participatory approach itself contributes to identifying beneficial ways to engage community members in the conduct of research. The participatory approach strengthened relationships among stakeholders and created trust, communication, and understanding of stakeholder stance. Broadening the perspective of different stakeholders was cited as an important benefit of participatory research. Supporting the claims of the CBPR literature, the evaluation found benefits of community involvement that increased sensitivity and propriety of the research effort.

Examples included how community members raised awareness among researchers about potential ethical concerns at various organized forums, such as town hall meetings. COTC Participation in Project I was primarily restricted to dissemination and translation, via the creation of educational materials and lay abstracts of publications, because providing meaningful input into the science itself would require years of advanced training.


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In contrast, Project II—an epidemiological investigation—allowed for levels of participation more generally regarded as appropriate in participatory research. Community members provided input into the design of the questionnaire and helped to identify compounds that should be included in the analysis of biospecimens. Some project participants clearly felt that the participatory process was hampered by the lack of clear agreements about how participation and collaboration in different areas including publication and dissemination would unfold.

Although there were communication challenges related to different motivations and values of the stakeholders involved, there were some notable successes in bridging gaps in knowledge and communication among scientists, advocates, and lay community members. A number of benefits of implementing a CBPR approach have been reported in the literature, including increased community capacity, increased relevance of data, increased trust, translation of research into policy, and emergence of new research questions.

Some challenges in this evaluation revolved around the atypical nature of the CBPR collaboration. Others involved in a CBPR clinical outcomes project found that, although the CBPR approach initially benefited both teams, divergent principles and methods eventually threatened the integrity of the research conducted.

As was indicated in this evaluation, clear agreements about roles and responsibilities may help stakeholders to negotiate participation. Whereas the former had a varied level of understanding and interest in the issues, the latter had a more sophisticated understanding of research and was highly experienced in translating science into effective advocacy.

The different interests and roles of these communities in this project and the different levels of understanding of research and the scientific process might also call for further adaptation of participatory research principles for different kinds of community partners, as well as for different kinds of research.

As with all partnerships where stakeholders have varied levels of expertise, interests, and different agendas regarding the topic of interest, the involvement of all stakeholders in planning how they will work together and negotiate differences in their principles and methods is critically important to the success of the partnership. This evaluation had several limitations. First, the quantitative instrument administered to participants was originally designed to evaluate the extent to which participatory research proposals and funded projects aligned with the tenets of participatory research.

The instrument used in this study may not have been sufficiently adapted to a project intending to use a participatory approach in the translation of research findings. Second, the study was cross-sectional and thus only provided an understanding of how stakeholders viewed the participatory process up to the point of the evaluation. Third, the sample of participants was small, although they were representative of stakeholders involved. The low response of community members to the quantitative survey may have led to some underrepresentation and biased reflection of the community perspective.

Finally, because of the unique context and structure of this project, findings may not be generalizable to other participatory research projects. Despite these limitations, it is clear that the participatory approach applied to this project facilitated the translation efforts of the COTC. CBPR has flourished over the past 15 years, but the benefits for health above and beyond traditional research remain understudied. Findings from this evaluation will assist stakeholders in the partnership negotiate roles and responsibilities for the translation and dissemination of the science to the public.

Upon completion of the project, stakeholders hope to conduct another evaluation to determine whether the CBPR approach enhanced research translation and improved research outcomes. Future research should focus on how partnership approaches can benefit basic science and epidemiological projects, and on negotiating appropriate roles and expectations for different stakeholders. The science benefited from community input via community advocates who brought key community concerns to the attention of researchers.

Researchers learned how to communicate more effectively their science to the public, thus increasing the likelihood that their findings will improve community health. For each question, check only one box. You may use the additional space provided after each question to further explain your responses. There are no right or wrong answers; we are interested in your honest reflections based on your experience with this project.

Please complete this questionnaire and bring it with you to your interview. In the case of this project, the primary intended users are COTC members, researchers, and community members, including activists, advocates and service providers. National Center for Biotechnology Information , U. Prog Community Health Partnersh. Author manuscript; available in PMC Mar The publisher's final edited version of this article is available at Prog Community Health Partnersh. See other articles in PMC that cite the published article. Abstract Background The growing literature on community-based participatory research CBPR suggests that a participatory approach benefits science in important ways.

Results The participatory approach by the COTC resulted in many important benefits including improved relationships among diverse stakeholders, knowledge generation, increased sensitivity and propriety of the research, and increased community support of research.

Conclusions Further research should focus on the adaptation of participatory research principles for different kinds of community partners and on the development and refinement of standards and tools to assist in evaluating the process and outcome of participatory research. Community-based participatory research, community health partnerships, process issues, breast cancer, environmental research, translation, dissemination, outreach.

To what extent was the translation process used by the COTC consistent with the participatory research guidelines? What facilitated the participatory research process that should be retained for future endeavors? What hindered the participatory research process that should be improved upon or eliminated from future endeavors?

Description of the BABCERC Research Projects and Selection Project I employed mouse models to study the impact of environmental stressors on breast cancer and elucidate the effects of timing of these exposures during critical windows of vulnerability in breast gland development. Overview of the Evaluation of the Participatory Approach of the COTC Institutional review board approval for this evaluation was obtained from a private board not affiliated with any stake-holders.

Cancer on the Margins

Analysis The evaluation team reviewed the quantitative results to determine frequencies of responses by type of stakeholder and the extent to which respondents rated the project as more or less participatory. Open in a separate window. Facilitators of and Barriers to Community Participation Project Structure as Facilitator and Barrier Respondents cited project structure as both a facilitator of and a barrier to community participation.

For example, a COTC member said: One participant alluded to the complexities of data collection, particularly when time is short: Lack of Explicit Agreements Regarding Stakeholder Roles Few, if any, written agreements clarified stakeholder roles in research design, implementation, interpretation, translation, and dissemination.


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