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1.  Creating a Cadre of Junior Investigators to Address the Challenges of Cancer-Related Health Disparities: Lessons Learned from the Community Networks Program 
Community-based participatory research (CBPR) initiatives such as the National Cancer Institute’s Community Networks Program (CNP) (2005–2010) often emphasize training of junior investigators from underrepresented backgrounds to address health disparities. From July to October 2010, a convenience sample of 80 participants from the 25 CNP national sites completed our 45-item, web-based survey on the training and mentoring of junior investigators. This study assessed the academic productivity and CBPR-related experiences of the CNP junior investigators (n=37). Those from underrepresented backgrounds reported giving more presentations in non-academic settings (9 vs. 4 in last 5 years, p=0.01), having more co-authored publications (8 vs. 3 in last 5 years, p=0.01), and spending more time on CBPR-related activities than their non-underrepresented counterparts. Regardless of background, junior investigators shared similar levels of satisfaction with their mentors and CBPR experiences. This study provides support for the success of the CNP’s training program, especially effort directed at underrepresented investigators.
PMCID: PMC3407323  PMID: 22528636
2.  Academic Incentives for Faculty Participation in Community-based Participatory Research 
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.
PMCID: PMC1494894  PMID: 12848841
community-based participatory research; collaborative research; policy research; evaluation research; faculty development
3.  A Funding Initiative for Community-Based Participatory Research: Lessons from the Harvard Catalyst Seed Grants 
The National Institutes of Health–funded Clinical and Translational Science Awards (CTSA) have increasingly focused on community-engaged research and funded investigators for community-based participatory research (CBPR). However, because CBPR is a collaborative process focused on community-identified research topics, the Harvard CTSA and its Community Advisory Board (CERAB) funded community partners through a CBPR initiative.
We describe lessons learned from this seed grants initiative designed to stimulate community–academic CBPR partnerships.
The CBPR program of the Harvard CTSA and the CERAB developed this initiative and each round incorporated participant and advisory feedback toward program improvement.
Lessons Learned
Although this initiative facilitated relevant and innovative research, challenges included variable community research readiness, insufficient project time, and difficulties identifying investigators for new partnerships.
Seed grants can foster innovative CBPR projects. Similar initiatives should consider preliminary assessments of community research readiness as well as strategies for meaningful academic researcher engagement.
PMCID: PMC3726716  PMID: 21441667
Community-based participatory research; clinical and translational research; capacity building; seed grants; community–academic partnerships
4.  Community-based Participatory Research Skills and Training Needs in a Sample of Academic Researchers from a Clinical and Translational Science Center in the Northeast 
To determine the Community-Based Participatory Research (CBPR) training interests and needs of researchers interested in CBPR to inform efforts to build infrastructure for conducting community-engaged research.
A 20-item survey was completed by 127 academic health researchers at Harvard Medical School, Harvard School of Public Health, and Harvard affiliated hospitals.
Slightly more than half of the participants reported current or prior experience with CBPR (58%). Across all levels of academic involvement, approximately half of the participants with CBPR experience reported lacking skills in research methods and dissemination, with even fewer reporting skills in training of community partners. Regardless of prior CBPR experience, about half of the respondents reported having training needs in funding, partnership development, evaluation, and dissemination of CBPR projects. Among those with CBPR experience, more than one third of the participants wanted a mentor in CBPR; however only 19% were willing to act as a mentor.
Despite having experience with CBPR, many respondents did not have the comprehensive package of CBPR skills, reporting a need for training in a variety of CBPR skill sets. Further, the apparent mismatch between the need for mentors and availability in this sample suggests an important area for development.
PMCID: PMC3374155  PMID: 22686211
5.  Addressing Cancer Disparities via Community Network Mobilization and Intersectoral Partnerships: A Social Network Analysis 
PLoS ONE  2012;7(2):e32130.
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.
PMCID: PMC3285642  PMID: 22384156
6.  A Review of Advocate–Scientist Collaboration in Federally Funded Environmental Breast Cancer Research Centers 
Environmental Health Perspectives  2010;118(12):1668-1675.
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.
PMCID: PMC3002185  PMID: 20621848
collaborative research; community-based participatory research; environmental breast cancer research
7.  Community-based participatory research as a tool to advance environmental health sciences. 
Environmental Health Perspectives  2002;110(Suppl 2):155-159.
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.
PMCID: PMC1241159  PMID: 11929724
8.  Harnessing the power of the grassroots to conduct public health research in sub-Saharan Africa: a case study from western Kenya in the adaptation of community-based participatory research (CBPR) approaches 
BMC Public Health  2013;13:91.
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.
PMCID: PMC3564692  PMID: 23368931
Community-based participatory research; Sub-Saharan Africa; Orphaned and separated children
9.  Bringing scientific rigor to community-developed programs in Hong Kong 
BMC Public Health  2012;12:1129.
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.
PMCID: PMC3544572  PMID: 23276067
Community interventions; Chinese; Parenting; Community-based participatory research; Randomized controlled trials
10.  Connecting Community With Campus to Address Cancer Health Disparities: A Community Grants Program Model 
With growing interest in the CBPR approach to cancer health disparities research, mechanisms are needed to support adherence to its principles. The Carolina Community Network (CCN), 1 of 25 Community Network Programs funded by the National Cancer Institute (NCI), developed a model for providing funds to community-based organizations.
This paper presents the rationale and structure of a Community Grants Program (CGP) model, describes the steps taken to implement the program, and discusses the lessons learned and recommendations for using the grants model for CBPR.
Three types of projects—cancer education, implementation of an evidence-based intervention, and the development of community–academic research partnerships—could be supported by a community grant. The CGP consists of four phases: Pre-award, peer-review process, post-award, and project implementation.
The CGP serves as a catalyst for developing and maintaining community–academic partnerships through its incorporation of CBPR principles.
Providing small grants to community-based organizations can identify organizations to serve as community research partners, fostering the CBPR approach in the development of community–academic partnerships by sharing resources and building capacity.
PMCID: PMC3612535  PMID: 21623024
NCI’s Community Networks Program; cancer health disparities; community-based participatory research; community–academic research partnerships; microgrants
11.  Capacity Building through Focus Group Training in Community-based Participatory Research 
Community-based participatory research (CBPR) emphasizes collaborative efforts among communities and academics where all members are equitable contributors. Capacity building through training in research methodology is a potentially important outcome for CBPR partnerships.
To describe the logistics and lessons learned from building community research capacity for focus group moderation in the context of a CBPR partnership.
After orientation to CBPR principles, members of a US suburban community underwent twelve hours of interactive learning in focus group moderation by a national focus group expert. An additional eight-hour workshop promoted advanced proficiency and built on identified strengths and weaknesses. Ten focus groups were conducted at an adult education center addressing a health concern previously identified by the center’s largely immigrant and refugee population. Program evaluation was achieved through multiple observations by community and academic-based observers.
Twenty-seven community and academic members were recruited through established relationships for training in focus group moderation, note-taking, and report compilation. Focus group training led to increased trust among community and research partners while empowering individual community members and increasing research capacity for CBPR.
Community members were trained in focus group moderation and successfully applied these skills to a CBPR project addressing a health concern in the community. This approach of equipping community members with skills in a qualitative research method promoted capacity building within a socio-culturally diverse community, while strengthening community-academic partnership. In this setting, capacity building efforts may help to ensure the success and sustainability for continued health interventions through CBPR.
PMCID: PMC4036461  PMID: 22267359
Capacity building; community-based participatory research; focus groups; immigrant or ethnic populations; qualitative research
12.  The Marriage of Community-Based Participatory Research and Practice-Based Research Networks: Can It Work? — A Research Involving Outpatient Settings Network (RIOS Net) Study 
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.
PMCID: PMC2734054  PMID: 19587258
13.  The Art and Science of Integrating Undoing Racism with CBPR: Challenges of Pursuing NIH Funding to Investigate Cancer Care and Racial Equity 
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.
PMCID: PMC3261297  PMID: 17072760
Breast cancer; Community-based participatory research;  Health disparities; Institutional racism.
14.  Faculty perspectives on community-based research: “I see this still as a journey” 
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.
PMCID: PMC3124219  PMID: 19480587
ethics of community-based participatory research; community-academic partnerships; qualitative research; in-depth interviews; faculty; academic medicine
15.  Engaging the Deaf American Sign Language Community: Lessons From a Community-Based Participatory Research Center 
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.
PMCID: PMC3576694  PMID: 22982845
Community-based participatory research; health disparities; vulnerable populations; academic medical centers; health care facilities manpower and services; Deaf American Sign Language users
16.  The impact of implementing selected CBPR strategies to address disparities in urban Atlanta: a retrospective case study 
Health Education Research  2012;27(4):729-741.
In 2005, the Institute of Public Health at Georgia State University (GSU) received a 3-year community-based participatory research (CBPR) grant from the National Center for Minority Health and Health Disparities entitled Accountable Communities: Healthy Together (ACHT). Because urban health disparities result from complex interactions among social, economic and environmental factors, ACHT used specific CBPR strategies to engage residents, and promote the participation of community organizations serving, a low-income community in urban Atlanta to: (i) identify priority health and social or environmental problems and (ii) undertake actions to mitigate those problems. Three years after funding ended, a retrospective case study, using semi-structured, taped interviews was carried out to determine what impacts, if any, specific CBPR strategies had on: (i) eliciting resident input into the identification of priority problems and (ii) prompting actions by community organizations to address those problems. Results suggest that the CBPR strategies used were associated with changes that were supported and sustained after grant funding ended. Insights were also gained on the longer term impacts of ACHT on community health workers. Implications for future CBPR efforts, for researchers and for funders, are discussed.
PMCID: PMC3529631  PMID: 22717942
Cancer  2012;118(21):5366-5373.
Although large numbers of cancer survivors exist in every community, including minority communities, there is a significant gap in knowledge about best practices for these patients.
Community Networks Programs (CNPs) funded by the National Cancer Institute’s Center to Reduce Cancer Health Disparities, have developed and tested unique services for these communities. These programs have utilized community based participatory research techniques under a framework of diffusion of innovation and communications theory.
This article describes some specifically tailored interventions that may be useful to a wide range of providers working with the underserved
Enhancing life after cancer can be achieved in underserved communities by supplementing local resources.
PMCID: PMC3381933  PMID: 22434384
community networks; cancer; quality of life; health disparities; palliative care; comprehensive cancer care; spirituality
18.  Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: A case study 
Environmental Health  2010;9:39.
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.
PMCID: PMC2914003  PMID: 20637068
19.  A community based participatory approach to improving health in a Hispanic population 
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.
PMCID: PMC3094257  PMID: 21481262
20.  Assessment of Cancer Education Seminars for Appalachian Populations 
Cancer education seminars for Appalachian populations were conducted to: (1) increase knowledge of existing cancer disparities, (2) disseminate findings from Appalachian community-based participatory research (CBPR) projects, and (3) foster CBPR capacity building among community members by promoting social networking. Evaluation of the seminars was completed by: (1) using pre–post-surveys to assess changes in knowledge and attitudes at three regional and one national seminar and (2) measuring a change in the social network patterns of participants at a national seminar by analyzing the names of individuals known at the beginning and at the end of the seminar by each participant. Among participants, there was a significant increase in knowledge of Appalachian cancer disparities at two seminars [national, t(145)=3.41, p=0.001; Pennsylvania, t(189)=3.00, p=0.003] and a change in attitudes about Appalachia at one seminar [Ohio t(193)=−2.80, p=0.006]. Social network analysis, operationally defined for this study as familiarity with individuals attending the conference, showed participation in the national seminar fostered capacity building for future CBPR by the development of new network ties. Findings indicate that short-term outcomes of the seminars were accomplished. Future educational seminars should consider using social network analysis as a new evaluation methodology.
PMCID: PMC3650897  PMID: 22131064
Appalachian region; Health disparities; Cancer
21.  Community Capacity Building and Sustainability: Outcomes of Community-Based Participatory Research 
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.
PMCID: PMC3557849  PMID: 22982848
Community-based participatory research; process issues; education; power sharing
22.  A Community-Based Participatory Approach to Personalized, Computer-Generated Nutrition Feedback Reports: The Healthy Environments Partnership 
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.
Lessons Learned
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).
PMCID: PMC2662605  PMID: 19337572
Community-based participatory research; computer tailoring; nutrition feedback; cardiovascular disease; dietary behaviors
23.  Ethical Community-Engaged Research: A Literature Review 
American journal of public health  2013;103(12):e7-e14.
Health research has relied on ethical principles, such as those of the Belmont Report, to protect the rights and well-being of research participants.
Community-based participatory research (CBPR), however, must also consider the rights and wellbeing of communities. This requires additional ethical considerations that have been extensively discussed but not synthesized in the CBPR literature.
We conducted a comprehensive thematic literature review and summarized empirically grounded discussions of ethics in CBPR, with a focus on the value of the Belmont principles in CBPR, additional essential components of ethical CBPR, the ethical challenges CBPR practitioners face, and strategies to ensure that CBPR meets ethical standards. Our study provides a foundation for developing a working definition and a conceptual model of ethical CBPR.
PMCID: PMC3828990  PMID: 24134352
24.  Evaluating Community-Based Participatory Research to Improve Community-Partnered Science and Community Health 
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.
PMCID: PMC3586244  PMID: 22982842
Community-based participatory research; community health research; health disparities; process issues
25.  Contextualizing CBPR: Key Principles of CBPR meet the Indigenous research context 
Pimatisiwin  2009;7(1):1.
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.
PMCID: PMC2818123  PMID: 20150951

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