We have presented an example of how the CBPR approach can be applied to PBRN research. Consistent with current concepts about CBPR, community representatives participated directly in defining research priorities, in refining the study protocol, in informing data collection and analysis, and in scientific dissemination. Research findings have been returned to the community. Several other facets of CBPR−as defined by Wells−were employed during the project, including regular communication, project transparency, financial compensation, respect for values, accountability, and community and patient evaluation of progress.7
Proponents of CBPR generally speak of several outcomes of the process, including:
- Enhancing the relevance of research questions to the communities at highest risk;
- Enhancing the reliability and validity of measurement instruments;
- Improving response rates;
- Enhancing recruitment and retention;
- Strengthening interventions by incorporating cultural beliefs into scientifically valid approaches
- Facilitating the effective dissemination of findings to impact public health and policy;
- Increasing translation of evidence-based research into sustainable community change
Our example study was not designed to formally evaluate these outcomes, but as described above, we observed that, the CBPR approach did fulfill several of these expectations.
While the circumstances of the specific network and study described are unique, we believe the general concept of partnering with the community at each step of the research process is broadly feasible for most PBRNs (). We have found that such collaboration assures the relevance and appropriateness of the research questions, improves the efficiency of the data collection, enhances the data analysis, and fulfills an ethical obligation to return value to the community.
Proposed community-based participatory research approaches for practice-based research networks
PBRNs and CBPR
Practice-based research is particularly well-suited to applying CBPR methods. As Westfall, et al, point out, “there are striking parallels between PBRN research and CBPR.”11
Furthermore, practice-based research fits well with the vision promoted by the NIH Roadmap to “develop new partnerships of research with organized patient communities, community-based health care providers […] who care for sufficiently large groups of patients interested in working with researchers to quickly develop, test and deliver new interventions.”10
Strauss stresses that community advisory boards (CABs) — one element of a CBPR approach that PBRNs can adopt — can “facilitate research by providing advice about the informed consent process and the design and implementation of research protocols.”21
There are many examples of CBPR projects in the literature, but very few have been done by primary care clinicians.6, 13
Macaulay, however, calls for family practice physicians who do primary care research to use CBPR.13
“The training and skills of family physicians…make them especially suited to participatory research.” The need for this is most acute in communities of “poor, vulnerable, and minority populations.” Some of the specific skills family practitioners have which make them suited for conducting CBPR include established relationships, patient-centered skills, experience with uncertainty, pragmatism, and expertise with knowledge translation.
Challenges of CBPR in PBRNs
Incorporation of the CBPR model into PBRN research is not without challenges, however, as previous authors have outlined.5, 11
Difficulties may arise in identifying a “community”, particularly when a PBRN covers a large geographic area, and in assuring appropriate representativeness of the community. The definition of community may need to be broadened to go beyond people who simply share a geographical location to include, for example, the virtual community of patients and staff in the practices contained within a PBRN.4, 6, 7, 22
We believe these can be addressed through a variety of mechanisms for representing the community in network operations, such as outlined in .
A more complex challenge can be the process of matching community priorities with the scientific interest and expertise available within the network structure. In our experience, it has been helpful to set a sufficient number of priorities and for those priorities to be broadly enough phrased (e.g., “problem alcohol use”; “cancer prevention”) to allow a breadth of research questions to fall within the scope of those priorities. Creating partnerships with external content experts can help a PBRN to address those priorities outside its existing expertise.
A cluster of challenges relates to the realignment of relationships inherent in the CBPR process. Creating the partnership with community representatives that CBPR implies requires flexibility on the part of the researcher at each step of the research process.4
This requirement for flexibility might raise concern in the researcher about his/her ability to maintain fidelity to the scientific approach and about loss of control over the research process. On the contrary, we have found that open communication with the community does not require a sacrifice of elements of the research process, but can in fact strengthen the process by improving efficiency of data collection and enhancing relevance of the findings.
An extension of this partnership leads to new views about community benefit from research. Traditionally, researchers have felt that the potential for individual and group benefits from the research and its findings were sufficient, both ethically and practically. Some communities, however, have increasingly come to view the balance of benefits that the researcher receives (grant and salary funding, publications, career advancement) and those that the subject and community receive (often distant or minimal gain from the study procedures) as exploitative, particularly when one considers the risk that individuals or communities may assume. A new conceptualization of benefits to the community is thus called for, to include actions such as those described in item 5 (above). This new balance of benefits requires advance planning by the researcher, often together with the community, to assure delivery and funding.
The greatest difficulty in the incorporation of CBPR methods in PBRN research is clearly the cost. Communication and outreach with community representatives and groups incur inevitable time and monetary costs that are generally not provided for in the current research funding paradigm. The majority of PBRNs are challenged to assure sufficient stable infrastructure funding to maintain basic operations; the addition of these costs for expanded communication and outreach may be difficult to support. While there is no single solution to this problem, we believe that the increasing recognition of the importance of community engagement in the biomedical research process has begun to open up new channels for funding this engagement.1
Our example of the application of CBPR in a PBRN research project has limitations. As noted, the example presented is from only one network, and the specific steps taken may not readily generalize to other networks. Our intent, however, is not to suggest that the specific steps described be adopted elsewhere. Rather, our intent is to demonstrate the feasibility and advantages of applying the CBPR model to PBRN research, a finding we believe is generalizable. Our observations on costs and benefits of applying the CBPR approach may also be specific to the example described and not generalizable. We employ a more intensive model of community interaction (e.g., outreach staff) than might be required in other PBRN settings to apply the CBPR model, potentially increasing our costs over those that other networks may experience.
In our experience, both with the example provided and with other studies in our network, adopting CBPR approaches to PBRN research requires more time than “unilateral” research, expands infrastructure costs for the network, and requires having or building good working relationships with community members and local institutions. In the example presented of a clinical study of TM/CAM communication in the primary care setting in New Mexico, however, CBPR was the most appropriate model. It was feasible and greatly enhanced the process and findings. Community and patient participation was essential in the successful conduct of the study, leading to the development of a model of enhanced TM/CAM communication. Further reports on the marriage of CBPR and PBRNs can help to clarify the benefits and challenges of the relationship.