Community-Based Participatory Research
Definition: A collaborative approach that encourages community residents to participate in the full spectrum of research, with a goal of influencing change in community health, systems, programs or policies. (Source: National Institutes of Health)
Community-Based Participatory Research (CBPR) projects have presented opportunities for scientists, breast cancer patients/survivors and community members to cooperate in all aspects of study design and reporting of results (Altman, 2008; Brody, 2009; Chiu, 2013; Morello-Frosch, 2009).
The CBPR model emerged out of the education and social reform movements, but has more recently been effectively applied to public and environmental health. Among the key principles of CBPR is the aspiration that all involved in the CBPR process bring their own perspectives and help to shape the understanding and implementation of the research process.
The framework of CBPR has created an obligation to offer to provide individual sampling results to those study participants who want them (e.g., Altman 2008). Reporting individual and aggregate data to study participants allows for enhanced opportunities for commitment to individual action and collective advocacy to reduce exposures (Adams, 2011; Brown, 2012). This approach is counter to a more traditional clinical ethics model where individual results are not shared with participants when the clinical or public health significance of exposures is not well understood (Morello-Frosch, 2009). New ethical models that include report-backs are an important addition to this discussion (Brody, et al. 2007)
National Institute of Environmental Sciences (NIEHS) and the Breast Cancer and the Environment Research Program (BCERP) now routinely include breast cancer advocates, along with scientists and clinicians, in the full implementation of major research projects. Additionally, the California Breast Cancer Research Program’s (CBCRP) Special Research Initiative on Environment and Disparities includes not only basic science but also community-directed research projects aimed at better understanding factors underlying enhanced breast cancer risk. All aspects of CBCRP’s granting process include community partners and advocates.
The Northern California Household Exposure Study is a particularly effective and well-established community-based participatory research program exploring links between environmental exposures and disease, including breast cancer. This study is a collaborative between two universities (Brown and UC-Berkeley) and a private research institute (Silent Spring Institute). In its work examining exposures and the health experience in the cities of Richmond and Bolinas, California, this collaboration has expanded to include not only citizen participants but also members of two well-established, community-based environmental organizations (Communities for a Better Environment and Commonweal; Adams, 2011). The combination of research and community priorities in the project led to a delay in the expansion of an oil refinery in Richmond, a heavily industrial and polluted city.
The broad, multidisciplinary approach taken by participants from all backgrounds who engage in CBPR hopefully will continue to encourage dialogue between the various stakeholders interested in better understanding the connections and debates related to environmental risks and breast cancer, and ultimately in thinking about the possible personal and community responses to that information.
Community participants bring a holistic knowledge of their particular community’s social, political, economic and exposure environment, while scientists bring knowledge of how to frame research questions and collect data (Adams, 2011; Balazs, 2013; Cohen, 2012). Ultimately, this dialogue can strengthen the “rigor, relevance, and reach” (Balazs, 2013) of the research.
Building the deep level of trust required for community-based research requires time and strong communication skills from both researchers and communities who must both make a strong initial investment in a project, often before funding is available. Community members should be compensated appropriately for their time and expertise, which can increase study costs. Academic settings may not reward researchers for the investments they make in communities, and communities (especially those in greatest need) may not have time and energy to devote to a project prior to funding. Finally, researchers and communities may have different timelines for the release of study findings. Researchers may need to wait until findings are peer reviewed in order to adhere to academically rigorous standards, while communities may want data to be available more rapidly to protect community members.