Promoting Community Health and Eliminating Health Disparities Through Community-Based Participatory Research

Traditional Biomedical/Clinical Research and CBPR

Academic researchers typically propose research questions and determine study objectives. In the sample case, the objective was to improve community health by promoting physical activity. In standard approaches, researchers would design the study protocol, implement programs, analyze the data, and disseminate findings to professional peers and possibly to research participants. Community members (here, African Americans) traditionally would be excluded throughout the study, from design to dissemination. Their advice and assistance about working with the community and culturally bridging to it commonly would be sought. Typical research may or may not improve local health and health care practice and build community capacity for addressing health problems.²⁵ In contrast, CBPR aims to aid the community by collaboration of community and academic partners with equitable participation and decision making throughout the process.¹²

Fundamentals of CBPR

Community-based participatory research is increasingly being used to improve public health and eliminate health disparities, in part because adverse socioeconomic factors, such as poverty, substandard housing, unsafe environments, and inadequate opportunities for jobs and economic resources, affect health status.^26,27 The CBPR model may be seen to align well with key dimensions of the International Classification of Functioning, Disability and Health model.²⁸ The framework of the International Classification of Functioning, Disability and Health examines not only how an individual with a health condition functions in everyday life (part I) but also how contextual factors (environmental context and personal factors) can change the influence of a health condition on the functioning of the individual (part II).^28,29 The CBPR model incorporates domains of both parts. Traditional research includes part I domains but typically overlooks the lived experience. In contrast, the CBPR approach of Healey et al²³ addresses environmental barriers as well as family and social support regarding limitation and priority of physical activity.

The building of community capacity and equitable collaboration and control illustrate community empowerment in CBPR.¹² Academic researchers and community representatives jointly plan a project and develop objectives in light of a mutually negotiated mission and equal decision-making powers that incorporate community assets, knowledge, priorities, and customs. Researchers bring scientific knowledge, investigation expertise, and evaluation methods. Both groups may analyze data and disseminate outcomes through publications, brochures, presentations, and routes for diverse audiences.³⁰ Research findings can support policy advocacy and research translation into practice.³¹ Such active engagement of diverse communities in research can address many aspects of health disparities.^3,31–33

Potential Barriers to the Success of CBPR

Many challenges oppose the aims of CBPR for true collaboration and partnership.³⁴ An example is community distrust of researchers because of prior academic research that did not benefit participants, provided inadequate feedback, failed to bridge or understand cultural differences, insufficiently considered varied perspectives or beliefs, and inequitably distributed power, ownership, and funding.^12,35,36 These sources of rational community distrust are barriers to successful CBPR and collaborative relationships.^37,38 Building community trust generally requires sustained investigator presence in the community, open communication, incorporation of community members' knowledge and expertise in the CBPR process, and establishment of mutually clear expectations and intentions in the initial stage of the partnership. Relevant issues are resource allocation, partner roles and duties, and ultimate dissemination plans.

Barriers related to academic research may impede the development and merging of CBPR-based outcomes in the physical therapy profession. The current physical therapy paradigm primarily focuses on an individualized approach to the acquisition of evidence and service management. However, a transition to CBPR will require extra effort, time, and new skills, the latter including strategies for the dissemination of results to the community through nonacademic routes, such as newsletters or local media.^23,25,39 Other barriers for physical therapist faculty members are institutional promotion and tenure policies that emphasize traditional scholarly productivity.

Partnership and Empowerment

Community-based participatory research for clinical studies or local enhancements that foster health is emerging from increased understanding and recognition that the community is a social, cultural, and economic entity and that active and equitable participation of community members throughout the process should occur.³⁵ We stress the aims of mutual understanding and direct community benefits. In serving these objectives, the core CBPR principles (or action guides) enunciated by Israel et al^13(pp7–9) were as follows:

1. Recognizes community as a unit of identity.

2. Builds on strengths and resources within the community.

3. Facilitates collaborative, equitable involvement of all partners in all phases of the research.

4. Integrates knowledge and action for mutual benefit of all partners.

5. Promotes a co-learning and empowering process that attends to social inequalities.

6. Involves a cyclical and iterative process, with continual involvement of community members.

7. Addresses health from both positive and ecological perspectives.

8. Disseminates findings and knowledge gained to all partners.

Project Planning

In accordance with the principles of CBPR, academic researchers and community representatives form a collaborative team, as did Healey et al in the Austin area of Chicago.²³ Early planning may identify other potential core partners with key backgrounds or knowledge, attending to the inclusive aims of CBPR. Consequently, interdisciplinary collaboration will be a key feature of physical therapy–related CBPR, particularly when social, cultural, environmental, and public health issues are involved. To ensure full collaboration and knowledge sharing, community partners should help design recruitment strategies and identify useful community resources.^40,41 For example, Healey et al²³ included community health advocates who helped develop focus group questions and recruit local residents. The following steps will help ensure successful and equitable collaboration: early mutual agreement on guiding principles, such as open and regular communication, equal power in activity planning and decision making, ways in which to show mutual respect, and determination of a fair decision process. Building on published CBPR principles could be helpful.^15,40

Determining Research Objectives and Study Design

In CBPR, parties collaboratively determine study objectives, as in the sample case of enhancing physical activity among Austin residents.²³ The CBPR team reviewed information from focus groups and mutually designed goals for each project. Specifically, community health advocates and physical therapist students collaboratively created a training curriculum that promoted physical activity with structured exercises, ways to increase activity in everyday life, and strategies to overcome barriers. Such community inputs promote tailored CBPR interventions that are more likely than traditional methods to meet the needs of community members. Furthermore, the dynamic iterative CBPR model allows partners to incorporate other community priorities as the study proceeds.

To address community needs and priorities effectively, partners may need education about community culture, history, and skills as well as research fundamentals. Partners then may need significant time to mutually develop good research designs. Consider the challenge of implementing and sustaining physically active lifestyles. People must become self-disciplined and possibly retrained. Thus, major sharing of knowledge may be required to identify the most promising and realistic strategies.⁴⁰ To this end, special efforts may be needed to promote openness, understanding, patience, problem solving, and respectful collaboration.^40–42 Process and conflict resolution strategies are crucial. An example is regular partner meetings to monitor progress and address challenges.⁴⁰

Partners may distribute responsibilities and inputs. For example, community partners typically help generate hypotheses and customized intervention programs from their insiders' perspectives and priorities.²⁵ Although academic partners usually are significantly involved in or lead in the design of interventions, inputs from community partners ensure that local knowledge and the lived experience of community members are incorporated.^23,40,41 Community members may have primary responsibility for recruitment and retention.

Methodologically, mixed quantitative (eg, assessment of physical and functional outcomes) and qualitative (eg, focus group, interview, and open-ended survey questionnaire) methods generally are best. For example, the coalition of Healey et al²³ used data from focus groups, a survey questionnaire, and outcome measures, such as the 6-Minute Walk Test. Focus group information enhanced all partners' understanding of community members' attitudes toward physical activity and potential influences of family and social support on physical activity in their lives.

Data Analyses and Dissemination of Findings

Community-based participatory research data are equitably owned by all partner groups unless they fairly negotiate an alternative plan. The parties share responsibility for data analysis after mutual agreement on how to do it. Data analyses and interpretation ideally are frequent so that needed design modifications can be promptly implemented. Academic partners may conduct data analyses while all partners interpret the results and recommend the next steps. Of course, some interpretation efforts may require specific technical expertise that usually resides with academic investigators. When data interpretation requires expert input, we recommend a subsequent translation to all partners to enable the discussion of implications for the study and the community.

Partners in CBPR should collaboratively decide how to disseminate the findings, guided by the core commitment to the health of local community members.⁴³ For example, authorship decisions should be equitably negotiated among the partners. Community media platforms may include newsletters, local newspapers, TV stations, the Internet, and town hall meetings.²⁵ Healey et al²³ reported the wide distribution of 400 physical activity newsletters at various locations in Austin.

Eliminating Racial and Ethnic Health Disparities

We noted that in the 2013 vision of the physical therapy profession adopted by the American Physical Therapy Association, an underlying principle addresses the profession's obligation to recognize and ameliorate inequitable health and health care access.⁷ Reducing racial and ethnic health disparities relates to patient care in physical therapist practice.⁴⁶ In current evidence-based physical therapist practice, typical clinical studies produce evidence through traditional research models, such as randomized controlled trials and systematic reviews.⁴⁷ However, without the voices and perspectives of community members, outcomes may lack meaningful local relevance for addressing health disparities.

The American Physical Therapy Association developed strategies to identify existing racial and ethnic disparities in access to and use of outcomes from physical therapist services and developed guidelines for data collection.¹⁰ Community-based participatory research can serve as a powerful tool for gathering data and developing effective interventions for the involved communities.⁴⁸

Advancing CBPR in Practice

The CBPR approach is especially applicable to racial, ethnic, and other communities that are historically underserved or disadvantaged. “Communities” also can include people sharing a medical condition, such as diabetes, Parkinson disease, and spinal cord injury (SCI), and people who are healthy and trying to adopt lifestyle modification programs.^40,41,49,50 For example, the CBPR approach can involve collaborative research to develop, implement, and assess physical activity and exercise training for people with Parkinson disease, their caregivers, Parkinson disease associations, and health care providers.^50–52 The authors of the cited studies argued that input from patients with Parkinson disease is crucial for effectively implementing exercise interventions and increasing physical activity. Furthermore, they suggested that a logical next step for neurorehabilitation would be to use CBPR to help health care professionals serve both patients and their caregivers.

Illustrating the potential of CBPR, Kitzman and Hunter⁴⁹ reported a community-academic partnership of people living with SCI, community members, service providers, and SCI researchers. Through a rehabilitation network created to improve health outcomes and quality of life for people with SCI in rural communities, the collaboration produced many benefits and used extensive community assets. Reliance on multiple entities enhanced the feasibility of the long-term sustainability of the network. For both people with SCI and those who lived and worked with them, the conclusions were that a sense of having a voice, being heard, and building interpersonal connections decreased feelings of isolation and neglect.⁴⁹

In another example, a healthy heart intervention program involving CBPR effectively enhanced levels of physical activity in women.⁴¹ The authors attributed the success of the intervention to trained volunteers' recruitment of community members through social networks and program partners' role in interpreting study findings. In sum, the study findings supported the use of CBPR as a feasible and effective health care delivery strategy for community health promotion.⁴¹

Community-based rehabilitation is a strategy for rehabilitation, equalization of opportunities, and social integration of all people with disabilities within the community, but it also can promote fulfillment of the rights of people with disabilities to live as equal citizens, enjoy health and well-being, and participate fully in educational, social, cultural, religious, economic, and political activities.^6,53 However, limited progress has ensued over the past 30 years, especially for women with disabilities, people with severe and multiple disabilities, and people who have disabilities and are poor.⁶

Community-based participatory research may help solve these problems because it is more likely than traditional studies to generate specific evidence that supports delivering, adopting, and sustaining community-based rehabilitation programs. A core reason is that CBPR incorporates inputs and participation from people who live with a disability as part of the research team. Thus, the outcomes of CBPR are more readily visible and transferable to the target population.

Evidence for CBPR Effectiveness

We have suggested that to achieve its aims, the physical therapy profession should significantly increase its use of CBPR. However, what is the evidence that CBPR is equal or superior to standard scientific methods? For all of the appeal of promoting justice and respect, including local knowledge and community priorities, building community capacity, and fostering collaborative partnership, CBPR ultimately should benefit the involved communities and conclusions should meet the best evidence standards. Although completely addressing these concerns would require a detailed account beyond the scope of this article, a brief discussion follows.

For contrast, consider a “community-placed” study of influence on balance-related psychological factors in a larger fall prevention program that addressed balance performance at community sites.⁵⁴ Representatives of community organizations helped recruit older adult participants. The study design was quasi-experimental, with a control group and nonrandom assignment of participants and community organizations to minimize the influence of an artificial situation. The authors noted that assessing “the program's effectiveness under real-world conditions”^54(p1949) is “required to allow a true transfer of research knowledge into public health practice.”^54(p1955)

The intervention used in the community-placed study of Filiatrault et al⁵⁴ was in and for the community but not with the community.⁵⁵ Differences from CBPR were as follows:

• Community members did not determine or participate in designing, conducting, assessing, or disseminating the study.

• Community capacity building or empowerment might have ensued but was neither an aim nor assessed.

• The study reportedly was successful without either of the previously listed features.

Contrasting CBPR with the method of Filiatrault et al⁵⁴ highlights the initial evidential standards for evaluating the effectiveness of CBPR. We explained that the overarching aims of CBPR include equitable and collaborative community-investigator involvement throughout the process and community capacity building and empowerment, among others. Thus, the effectiveness of CBPR must address this complex set of outcomes. Harrop et al⁵⁶ identified 12 features of CBPR success that relate to such aims of CBPR. Examples are “trusting relationships,” “equitable processes and procedures,” “diverse membership,” “tangible benefits to all partners,” “collaborative dissemination,” and sustainable impact.^56(pS160)

Further clarifying the challenges of CBPR evaluation, Jagosh et al wrote, “The main challenge in evaluating PR [participatory research] is that it is, by nature, a research approach that can be applied to an array of interventions encompassing a multitude of research paradigms, methodologies, and methods. This requires distinguishing analytically between the benefits of co-governance for research processes and the benefits of the research program itself (ie, the research's health change goals).”^57(p313) For “participatory research,” these authors used criteria central to CBPR.

Fortunately, Jagosh et al examined 23 partnerships culled “from 7,167 abstracts and 591 full-text papers.”^57(p312) In summary, they found that “PR generates culturally and logistically appropriate research characteristics related to:

• Shaping the scope and direction of research.

• Developing program and research protocols.

• Implementing program and research protocols.

• Interpreting and disseminating research findings.”^57(p320)

Other findings^57(p320) were that “PR generates capacity to recruit,” “PR generates the capacity of the community partners [and] the research partners,” “PR generates disagreements between the co-governing stakeholders during decision-making processes, resulting in both positive outcomes for subsequent programming [and] negative outcomes for subsequent programming,” synergy builds that enhances “the quality of outputs and outcomes over time” builds, and “PR generates systemic changes and new unanticipated projects and activity.”

Finally, we do agree that the evidence base for CBPR needs further strengthening, but supporting data continue accumulating. Some aspects of the scientific evidence for the effectiveness of CBPR are unresolved. Buchanan et al wrote, “To assess the ‘CBPR effect,’ the ideal research design would be a group-randomized trial that compared communities randomized to the CBPR process to communities assigned to the comparison condition of a traditional researcher-driven investigation. Such an investigation, however, would be tremendously complicated and practically impossible.”^58(p157) To our knowledge, this ideal has not been reached. However, this ideal is deficient because CBPR has the overarching aims of justice, respect, and use of local knowledge. In addition, “traditional research-driven investigation” does not intentionally build community capacity.