Recognizing the need to overcome the obstacles of traditional university- and discipline-oriented research approaches, a variety of incentives to promote community-based participatory research (CBPR) are presented. Experiences of existing CBPR researchers are used in outlining how this methodological approach can appeal to faculty: the common ground shared by faculty and community leaders in challenging the status quo; opportunities to have an impact on local, regional, and national policy; and opening doors for new research and funding opportunities. Strategies for promoting CBPR in universities are provided in getting CBPR started, changing institutional practices currently inhibiting CBPR, and institutionalizing CBPR. Among the specific strategies are: development of faculty research networks; team approaches to CBPR; mentoring faculty and students; using existing national CBPR networks; modifying tenure and promotion guidelines; development of appropriate measures of CBPR scholarship; earmarking university resources to support CBPR; using Institutional Review Boards to promote CBPR; making CBPR-oriented faculty appointments; and creating CBPR centers.
community-based participatory research; collaborative research; policy research; evaluation research; faculty development
Community mobilization and collaboration among diverse partners are vital components of the effort to reduce and eliminate cancer disparities in the United States. We studied the development and impact of intersectoral connections among the members of the Massachusetts Community Network for Cancer Education, Research, and Training (MassCONECT). As one of the Community Network Program sites funded by the National Cancer Institute, this infrastructure-building initiative utilized principles of Community-based Participatory Research (CBPR) to unite community coalitions, researchers, policymakers, and other important stakeholders to address cancer disparities in three Massachusetts communities: Boston, Lawrence, and Worcester. We conducted a cross-sectional, sociometric network analysis four years after the network was formed. A total of 38 of 55 members participated in the study (69% response rate). Over four years of collaboration, the number of intersectoral connections reported by members (intersectoral out-degree) increased, as did the extent to which such connections were reported reciprocally (intersectoral reciprocity). We assessed relationships between these markers of intersectoral collaboration and three intermediate outcomes in the effort to reduce and eliminate cancer disparities: delivery of community activities, policy engagement, and grants/publications. We found a positive and statistically significant relationship between intersectoral out-degree and community activities and policy engagement (the relationship was borderline significant for grants/publications). We found a positive and statistically significant relationship between intersectoral reciprocity and community activities and grants/publications (the relationship was borderline significant for policy engagement). The study suggests that intersectoral connections may be important drivers of diverse intermediate outcomes in the effort to reduce and eliminate cancer disparities. The findings support investment in infrastructure-building and intersectoral mobilization in addressing disparities and highlight the benefits of using CBPR approaches for such work.
The Long Island Breast Cancer Study Project was the first federally funded study of environmental causes of breast cancer. Although advocates were expected to participate in this study, the details of their participation were not adequately clarified in project guidelines, which resulted in confusion over their role in the project. The Breast Cancer and Environment Research Centers (BCERCs) are funded by the National Institute of Environmental Health Sciences and the National Cancer Institute; these centers continue to conduct research into environmental links to breast cancer and to clarify advocate–scientist guidelines for collaboration.
Practitioners in community-based participatory research (CBPR) are grappling with how to improve CBPR projects for all groups involved in breast cancer and environmental studies. The ever-growing body of literature on CBPR elaborates on a number of factors that make CBPR particularly challenging, specifically regarding partnerships between advocate and scientific communities. This study draws on CBPR principles to evaluate advocate–scientist collaboration in the BCERCs.
We conducted surveys at BCERC annual meetings in 2005 and 2007 and 11 in-depth open-ended interviews with key stakeholders such as primary investigators within the centers to assess the perceptions of the advocates and scientists regarding collaboration between advocates and scientists who were engaged in CBPR studies.
We found that although participatory guidelines were a focus of BCERCs, underlying differences between advocates and scientists with regard to paradigms of scientific inquiry, priorities, and desired outcomes need to be addressed for more effective collaboration to take place.
Our findings contribute to the broader CBPR literature by highlighting the role of underlying assumptions that may hinder the collaborative process and suggest the need for continued assessment research into participatory research projects on breast cancer and the environment.
collaborative research; community-based participatory research; environmental breast cancer research
The past two decades have witnessed a rapid proliferation of community-based participatory research (CBPR) projects. CBPR methodology presents an alternative to traditional population-based biomedical research practices by encouraging active and equal partnerships between community members and academic investigators. The National Institute of Environmental Health Sciences (NIEHS), the premier biomedical research facility for environmental health, is a leader in promoting the use of CBPR in instances where community-university partnerships serve to advance our understanding of environmentally related disease. In this article, the authors highlight six key principles of CBPR and describe how these principles are met within specific NIEHS-supported research investigations. These projects demonstrate that community-based participatory research can be an effective tool to enhance our knowledge of the causes and mechanisms of disorders having an environmental etiology, reduce adverse health outcomes through innovative intervention strategies and policy change, and address the environmental health concerns of community residents.
Community-based participatory research (CBPR) is a collaborative approach to research that involves the equitable participation of those affected by an issue. As the field of global public health grows, the potential of CBPR to build capacity and to engage communities in identification of problems and development and implementation of solutions in sub-Saharan Africa has yet to be fully tapped. The Orphaned and Separated Children’s Assessments Related to their Health and Well-Being (OSCAR) project is a longitudinal cohort of orphaned and non-orphaned children in Kenya. This paper will describe how CBPR approaches and principles can be incorporated and adapted into the study design and methods of a longitudinal epidemiological study in sub-Saharan Africa using this project as an example.
The CBPR framework we used involves problem identification, feasibility and planning; implementation; and evaluation and dissemination. This case study will describe how we have engaged the community and adapted CBPR methods to OSCAR’s Health and Well-being Project’s corresponding to this framework in four phases: 1) community engagement, 2) sampling and recruitment, 3) retention, validation, and follow-up, and 4) analysis, interpretation and dissemination.
To date the study has enrolled 3130 orphaned and separated children, including children living in institutional environments, those living in extended family or other households in the community, and street-involved children and youth. Community engagement and participation was integral in refining the study design and identifying research questions that were impacting the community. Through the participation of village Chiefs and elders we were able to successfully identify eligible households and randomize the selection of participants. The on-going contribution of the community in the research process has been vital to participant retention and data validation while ensuring cultural and community relevance and equity in the research agenda.
CBPR methods have the ability to enable and strengthen epidemiological and public health research in sub-Saharan Africa within the social, political, economic and cultural contexts of the diverse communities on the continent. This project demonstrates that adaptation of these methods is crucial to the successful implementation of a community-based project involving a highly vulnerable population.
Community-based participatory research; Sub-Saharan Africa; Orphaned and separated children
This paper describes efforts to generate evidence for community-developed programs to enhance family relationships in the Chinese culture of Hong Kong, within the framework of community-based participatory research (CBPR).
The CBPR framework was applied to help maximize the development of the intervention and the public health impact of the studies, while enhancing the capabilities of the social service sector partners.
Four academic-community research teams explored the process of designing and implementing randomized controlled trials in the community. In addition to the expected cultural barriers between teams of academics and community practitioners, with their different outlooks, concerns and languages, the team navigated issues in utilizing the principles of CBPR unique to this Chinese culture. Eventually the team developed tools for adaptation, such as an emphasis on building the relationship while respecting role delineation and an iterative process of defining the non-negotiable parameters of research design while maintaining scientific rigor. Lessons learned include the risk of underemphasizing the size of the operational and skills shift between usual agency practices and research studies, the importance of minimizing non-negotiable parameters in implementing rigorous research designs in the community, and the need to view community capacity enhancement as a long term process.
The four pilot studies under the FAMILY Project demonstrated that nuanced design adaptations, such as wait list controls and shorter assessments, better served the needs of the community and led to the successful development and vigorous evaluation of a series of preventive, family-oriented interventions in the Chinese culture of Hong Kong.
Community interventions; Chinese; Parenting; Community-based participatory research; Randomized controlled trials
Interest in community-based participatory research (CBPR) has surged in the last several years based on its potential to enhance the quality and usefulness of research outcomes. Practice-based research networks (PBRNs) potentially provide a bridge between the research endeavor and communities, and PBRNs have been identified as a promising venue for CBPR. This marriage of CBPR and PBRNs, however, faces many challenges, such as locus of project idea generation, time constraints, and funding limitations.
Case study description of the application of the CBPR model and specific CBPR principles to PBRN research, using a recent PBRN study of communication about traditional, complementary, and alternative medicine.
Challenges (e.g., added cost, time) and benefits (e.g., improved research data collection process, enhanced data analysis) resulted from application of the CBPR model and are detailed.
For practical and ethical reasons, PBRNs need to adopt the CBPR approach for certain types, if not all, of their research. This might require operational adaptations by the PBRN (e.g., a community advisory board, community membership in the network board of directors, outreach to community groups for input into network priorities) as well as dedicated time and funding.
In this nation, the unequal burden of disease among People of Color has been well documented. One starting point to eliminating health disparities is recognizing the existence of inequities in health care delivery and identifying the complexities of how institutional racism may operate within the health care system. In this paper, we explore the integration of community-based participatory research (CBPR) principles with an Undoing Racism process to conceptualize, design, apply for, and secure National Institutes of Health (NIH) funding to investigate the complexities of racial equity in the system of breast cancer care. Additionally, we describe the sequence of activities and “necessary conflicts” managed by our Health Disparities Collaborative to design and submit an application for NIH funding. This process of integrating CBPR principles with anti-racist community organizing presented unique challenges that were negotiated only by creating a strong foundation of trusting relationships that viewed conflict as being necessary. The process of developing a successful NIH grant proposal illustrated a variety of important lessons associated with the concepts of cultural humility and cultural safety. For successfully conducting CBPR, major challenges have included: assembling and mobilizing a partnership; the difficulty of establishing a shared vision and purpose for the group; the problem of maintaining trust; and the willingness to address differences in institutional cultures. Expectation, acceptance and negotiation of conflict were essential in the process of developing, preparing and submitting our NIH application. Central to negotiating these and other challenges has been the utilization of a CBPR approach.
Breast cancer; Community-based participatory research; Health disparities; Institutional racism.
Academic faculty members are increasingly following community-based participatory research (CBPR) principles. We conducted qualitative, in-depth interviews with 22 Johns Hopkins faculty members who conduct community-based research to understand their experiences and perspectives. Respondents engaged the community in numerous ways, ranging from working with community advisory boards to hiring community members as project staff to collaborating with community members across all phases of research. Challenges included defining “community,” ensuring adequate community representation, sharing power with community partners, overcoming an institutional history of strained community-academic relationships, and working within existing academic incentive structures. Despite these challenges, respondents generally felt their experiences conducting research with community participation were positive and successful. Policy changes at funding and academic institutions and an emphasis on the similarities between CBPR and ethical principles could improve support for CBPR approaches.
ethics of community-based participatory research; community-academic partnerships; qualitative research; in-depth interviews; faculty; academic medicine
Numerous publications demonstrate the importance of community-based participatory research (CBPR) in community health research, but few target the Deaf community. The Deaf community is understudied and underrepresented in health research despite suspected health disparities and communication barriers.
The goal of this paper is to share the lessons learned from the implementation of CBPR in an understudied community of Deaf American Sign Language (ASL) users in the greater Rochester, New York, area.
We review the process of CBPR in a Deaf ASL community and identify the lessons learned.
Key CBPR lessons include the importance of engaging and educating the community about research, ensuring that research benefits the community, using peer-based recruitment strategies, and sustaining community partnerships. These lessons informed subsequent research activities.
This report focuses on the use of CBPR principles in a Deaf ASL population; lessons learned can be applied to research with other challenging-to-reach populations.
Community-based participatory research; health disparities; vulnerable populations; academic medical centers; health care facilities manpower and services; Deaf American Sign Language users
We report on the challenges of obtaining Institutional Review Board (IRB) coverage for a community-based participatory research (CBPR) environmental justice project, which involved reporting biomonitoring and household exposure results to participants, and included lay participation in research.
We draw on our experiences guiding a multi-partner CBPR project through university and state Institutional Review Board reviews, and other CBPR colleagues' written accounts and conference presentations and discussions. We also interviewed academics involved in CBPR to learn of their challenges with Institutional Review Boards.
We found that Institutional Review Boards are generally unfamiliar with CBPR, reluctant to oversee community partners, and resistant to ongoing researcher-participant interaction. Institutional Review Boards sometimes unintentionally violate the very principles of beneficence and justice which they are supposed to uphold. For example, some Institutional Review Boards refuse to allow report-back of individual data to participants, which contradicts the CBPR principles that guide a growing number of projects. This causes significant delays and may divert research and dissemination efforts. Our extensive education of our university Institutional Review Board convinced them to provide human subjects protection coverage for two community-based organizations in our partnership.
IRBs and funders should develop clear, routine review guidelines that respect the unique qualities of CBPR, while researchers and community partners can educate IRB staff and board members about the objectives, ethical frameworks, and research methods of CBPR. These strategies can better protect research participants from the harm of unnecessary delays and exclusion from the research process, while facilitating the ethical communication of study results to participants and communities.
The Charlotte-Mecklenburg region has one of the fastest growing Hispanic communities in the country. This population has experienced disparities in health outcomes and diminished ability to access healthcare services. This city is home to an established practice-based research network (PBRN) that includes community representatives, health services researchers, and primary care providers. The aims of this project are: to use key principles of community-based participatory research (CBPR) within a practice-based research network (PBRN) to identify a single disease or condition that negatively affects the Charlotte Hispanic community; to develop a community-based intervention that positively impacts the chosen condition and improves overall community health; and to disseminate findings to all stakeholders.
This project is designed as CBPR. The CBPR process creates new social networks and connections between participants that can potentially alter patterns of healthcare utilization and other health-related behaviors. The first step is the development of equitable partnerships between community representatives, providers, and researchers. This process is central to the CBPR process and will occur at three levels -- community members trained as researchers and outreach workers, a community advisory board (CAB), and a community forum. Qualitative data on health issues facing the community -- and possible solutions -- will be collected at all three levels through focus groups, key informant interviews and surveys. The CAB will meet monthly to guide the project and oversee data collection, data analysis, participant recruitment, implementation of the community forum, and intervention deployment. The selection of the health condition and framework for the intervention will occur at the level of a community-wide forum. Outcomes of the study will be measured using indicators developed by the participants as well as geospatial modeling.
On completion, this study will: determine the feasibility of the CBPR process to design interventions; demonstrate the feasibility of geographic models to monitor CBPR-derived interventions; and further establish mechanisms for implementation of the CBPR framework within a PBRN.
For communities, the value of community-based participatory research (CBPR) is often manifested in the outcomes of increased capacity and sustainable adoption of evidence-based practices for social change. Educational opportunities that promote discourse between community and academic partners can help to advance CBPR and better define these outcomes.
This paper describes a community–academic conference to develop shared definitions of community capacity building and sustainability related to CBPR and to identify obstacles and facilitators to both.
“Taking It to the Curbside: Engaging Communities to Create Sustainable Change for Health” was planned by five Clinical Translational Science Institutes and four community organizations. After a keynote presentation, breakout groups of community and academic members met to define community capacity building and sustainability, and to identify facilitators and barriers to achieving both. Groups were facilitated by researcher–community partner teams and conversations were recorded and transcribed. Qualitative analysis for thematic content was conducted by a subset of the planning committee.
Important findings included learning that (1) the concepts of capacity and sustainability were considered interconnected; (2) partnership was perceived as both a facilitator and an outcome of CBPR; (3) sustainability was linked to “transfer of knowledge” from one generation to another within a community; and (4) capacity and sustainability were enhanced when goals were shared and health outcomes were achieved.
Community capacity building and sustainability are key outcomes of CBPR for communities. Co-learning opportunities that engage and mutually educate both community members and academics can be useful strategies for identifying meaningful strategies to achieve these outcomes.
Community-based participatory research; process issues; education; power sharing
Computer tailoring and personalizing recommendations for dietary health-promoting behaviors are in accordance with community-based participatory research (CBPR) principles, which emphasizes research that benefits the participants and community involved.
To describe the CBPR process utilized to computer-generate and disseminate personalized nutrition feedback reports (NFRs) for Detroit Healthy Environments Partnership (HEP) study participants.
The CBPR process included discussion and feedback from HEP partners on several draft personalized reports. The nutrition feedback process included defining the feedback objectives; prioritizing the nutrients; customizing the report design; reviewing and revising the NFR template and readability; producing and disseminating the report; and participant follow-up.
Application of CBPR principles in designing the NFR resulted in a reader-friendly product with useful recommendations to promote heart health.
A CBPR process can enhance computer tailoring of personalized NFRs to address racial and socioeconomic disparities in cardiovascular disease (CVD).
Community-based participatory research; computer tailoring; nutrition feedback; cardiovascular disease; dietary behaviors
Since 2007, the National Congress of American Indians (NCAI) Policy Research Center (PRC) has partnered with the Universities of New Mexico and Washington to study the science of community-based participatory research (CBPR). Our goal is to identify facilitators and barriers to effective community–academic partnerships in American Indian and other communities, which face health disparities.
We have described herein the scientific design of our National Institutes of Health (NIH)-funded study (2009–2013) and lessons learned by having a strong community partner leading the research efforts.
The research team is implementing a mixed-methods study involving a survey of principal investigators (PIs) and partners across the nation and in-depth case studies of CBPR projects.
We present preliminary findings on methods and measures for community-engaged research and eight lessons learned thus far regarding partnership evaluation, advisory councils, historical trust, research capacity development of community partner, advocacy, honoring each other, messaging, and funding.
Study methodologies and lessons learned can help community–academic research partnerships translate research in communities.
Community-based participatory research; community health research; health disparities; process issues
This paper addresses two questions regarding the use of Community-based Participatory Research (CBPR) approaches with tribal communities. First, how do “gold standard” CBPR principles hold up when applied to Native American communities and what additional contextual information is necessary to understand and work with these principles in this setting? Second, what additional principles or recommendations are helpful for researchers interested in conducting research using a CBPR approach with tribal communities? We studied a variety of literature sources on CBPR and Native health research to answer these questions. We are unaware of any publications that contextualize CBPR principles for working with specific populations. This information has direct application for conducting research with tribal communities, and confirms the importance of using CBPR approaches in this setting.
Background: Marietta, Ohio, is an Appalachian-American community whose residents have long struggled with understanding their exposure to airborne manganese (Mn). Although community engagement in research is strongly endorsed by the National Institutes of Health and the National Institute of Environmental Health Sciences in particular, little has been documented demonstrating how an academic–community partnership that implements the community-based participatory research (CBPR) principles can be created and mobilized for research.
Objectives: We created a bidirectional, academic–community partnership with an Appalachian-American community to a) identify the community’s thoughts and perceptions about local air quality, its effect on health, and the perception of risk communication sources and b) jointly develop and conduct environmental health research.
Methods: We formed a community advisory board (CAB), jointly conducted pilot research studies, and used the results to develop a community-driven research agenda.
Results: Persons in the community were “very concerned” to “concerned” about local air quality (91%) and perceived the air quality to have a direct impact on their health and on their children’s health (93% and 94%, respectively). The CAB identified the primary research question: “Does Mn affect the cognition and behavior of children?” Although the community members perceived research scientists as the most trusted and knowledgeable regarding risks from industrial emissions, they received very little risk information from research scientists.
Conclusions: Engaging a community in environmental health research from its onset enhanced the quality and relevance of the research investigation. The CBPR principles were a useful framework in building a strong academic–community partnership. Because of the current disconnect between communities and research scientists, academic researchers should consider working collaboratively with community-based risk communication sources.
academic–community partnership; air quality; Appalachian American; community advisory board; community-based participatory research; manganese; risk perception
Community-based participatory research (CBPR) is gaining increasing credence among public health researchers and practitioners. However, there is no standardization in assessing the quality of research methods, the effectiveness of the interventions, and the reporting requirements in the literature. The absence of standardization precludes meaningful comparisons of CBPR studies. Several authors have proposed a broad set of competencies required for CBPR research for both individuals and organizations, but the discussion remains fragmented. The Prevention Research Centers (PRC) Program recently began a qualitative assessment of its national efforts, including an evaluation of how PRCs implement CBPR studies. Topics of interest include types of community partnerships; community capacity for research, evaluation, and training; and factors that help and hinder partner relationships. The assessment will likely contribute to the development of a standard set of competencies and resources required for effective CBPR.
Healthcare leaders in a small rural American Indian community and university partners used the community-based participatory research (CBPR) method to survey cancer survivors.
To provide support for the use of CBPR to generate ideas for how to improve the detection and treatment of cancer in American Indian communities.
Partners worked together to develop a mail-out survey and send it to the Indian health clinic’s patients who had cancer in the past five years. The survey sought information on their experiences with cancer screenings, cancer diagnoses, and accessing and receiving cancer treatment.
Community leaders identified three priority areas for intervention: 1) high incidence of breast cancer; 2) lack of culturally appropriate cancer education; and 3) need for a more in-depth assessment.
CBPR’s partnership principle allowed for results to be viewed within the community’s context, availability of community resources, and relevant cultural beliefs and traditions.
American Indians; cancer; healthcare disparities; community-based participatory research; health care access
There is a growing interest in community based participatory research (CBPR) methods to address issues of health disparities. Although the success of CBPR is dependent upon the formation of community-researcher partnerships, new researchers as well as seasoned investigators who are transitioning to CBPR often lack the skills needed to develop and maintain these partnerships.
The purpose of the article is to discuss the competencies needed by new researchers to form successful CBPR partnerships.
Methods and Lessons learned
The author presents a series of strategic steps that are useful in establishing academic-community partnerships and in initiating, maintaining and sustaining CBPR projects. These steps include suggestions regarding community engagement, selection of Community Advisory Board members, outreach, the community’s role in problem identification, selection of research methodologies, considerations related to the community setting, need for flexibility and patience, “insider vs. outsider” conflicts, commitment and training issues, timing concerns for tenure-track faculty and the process of community empowerment.
CBPR is both rewarding and time consuming, for both the researcher and members of the community. Given its promise to address health disparities, it is imperative that researchers acquire the skills needed to develop and cultivate durable community-researcher partnerships.
The purpose of this article is to share lessons learned from implementing community-based participatory research (CBPR) in Indian Country that may be generalizable to other medically underserved communities. CBPR is currently included in multiple grant announcements by the National Institute of Health and Centers for Disease Control and Prevention, but information about this methodology vs traditional research methodology is often misleading. This article addresses some common mistakes made by academic research institutes by sharing what we have learned about how CBPR can be implemented in a respectful manner. The majority of tribal Nations prefer, if not mandate, that CBPR be used in most proposed studies involving their communities today.
This case history describes the history of the Center for Urban Epidemiological Studies (CUES), an urban research center based in New York City. Between 1996 and 1999, CUES was transformed from an institution that worked with the medical schools of the region to a center seeking to define a new practice of community-based participatory research (CBPR). The report summarizes how and why CUES has changed, identifies its main accomplishments and challenges, and discusses some of the lessons learned to date. It illustrates how the principles of CBPR have influenced the development of CUES. The case history suggests that it is possible for an organization to transform itself from a researcher-driven orientation toward a more participatory model. The early history also demonstrates that it is possible to engage community organizations and activists in an ongoing effort to study and address complex urban health problems such as asthma, substance abuse, and infections diseases. Finally, the report illustrates that CBPR is a process that evolves in response to specific situational factors.
Asthma; Community-based participatory research; Urban health; Substance abuse
In recent years there have been a significant number of publications on the benefits and challenges of community-based participatory research (CBPR). In this introduction we give an overview of three projects presented in this mini-monograph and highlight their commonalities and differences in developing community–university partnerships. While the studies presented here were not required to use CBPR strategies in their work, they did engage community members in a participatory manner. In this mini-monograph we examine how these multifaceted research questions are addressed while simultaneously negotiating complex relationships among researchers and communities as they strive for a more equitable partnership—not only in the distribution of resources but also in power/authority, the process of research, and its outcome. The three papers in this mini-monograph offer insights into various ways of forming, working, and sustaining community–university partnerships in conducting CBPR. They illustrate both the potential benefits and some of the challenges involved with establishing partnerships between community groups and researchers committed to the mutual goal of promoting environmental health. They suggest the importance of nonprescriptive frameworks for conducting community-based participatory research that focuses on more equitable power relationships to address health disparities to help alleviate environmental health problems.
community-based participatory research; community–university partnership; environmental exposures; health disparities; methodology
Parkinson's disease (PD) is a chronic, progressive, as-of-yet incurable, neurodegenerative condition affecting the nigro–striatal dopaminergic system. Emerging evidence suggests the importance of exercise in improving the trajectory of PD. Yet few people with PD are physically active. One challenge that healthcare professionals face in the 21st century is how to deliver physical activity programs to the population of individuals living with PD. A novel approach to delivering physical activity to people with PD is introduced – termed community-based participatory research (CBPR) – which engages people with PD and patient advocates as co-researchers in the development and implementation of community-based exercise programs. The authors describe the CBPR approach and provide several recent examples of community exercise programs that are steps in the direction of developing the CBPR model. This is followed by a discussion of what a more fully realized CBPR model might look like. Finally, the authors describe some obstacles to conducting CBPR and suggest strategies for overcoming them. It is argued that people with PD are an integral component of delivering the exercise intervention.
Ethical principles of community-based participatory research (CBPR)— specifically, community engagement, mutual learning, action-reflection, and commitment to sustainability—stem from the work of Kurt Lewin and Paulo Freire. These are particularly relevant in cancer disparities research because vulnerable populations are often construed to be powerless, supposedly benefiting from programs over which they have no control. The long history of exploiting minority individuals and communities for research purposes (the U.S. Public Health Service Tuskegee Syphilis Study being the most notorious) has left a legacy of mistrust of research and researchers. The purpose of this article is to examine experiences and lessons learned from community health workers (CHWs) in the 10-year translation of an educational intervention in the research-to-practice-to-community continuum. We conclude that the central role played by CHWs enabled the community to gain some degree of control over the intervention and its delivery, thus operationalizing the ethical principles of CBPR.
Colorectal cancer; African Americans; cancer disparities; community-based participatory research; ethics; translational research; community health workers