Building capacity for community-based participatory research to address cancer disparities: Case report from a Community Networks Program Center.
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ABSTRACT:
SUBMITTER: Brown LD
PROVIDER: S-EPMC8641647 | biostudies-literature | 2020 Oct
REPOSITORIES: biostudies-literature
Publications
Building capacity for community-based participatory research to address cancer disparities: Case report from a Community Networks Program Center.
Brown Louis D LD Strong Larkin L LL Civallero Linda L Mullen Patricia Dolan PD Chang Shine S
Evaluation and program planning 20200523
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Project description:While rural-urban cancer disparities persist, the research building capacity between rural communities and high-quality cancer centers remains limited. Thus, we describe how a National Cancer Institute-designated cancer center partnered with rural community stakeholders to adapt a cancer prevention-focused research and community capacity-building workshop. The workshop's goal was to strengthen community-academic partnerships and facilitate the development of sustainable well-resourced rural cancer-focused research. Researchers from the Siteman Cancer Center partnered with community leaders from rural counties in southern Illinois. We adapted the workshop from an existing evidence-based program. We analyzed changes in knowledge and research capacity and relevance to their community work. From February to May 2019, community partners guided all elements of the workshop development. Workshop participants were mostly White race (93%), had a college degree or beyond (75%), reported living in a rural community (93%), and represented an academic, faith-based, or healthcare institution (78%). Participants' mean knowledge scores of the presented content increased significantly after each session, from 9.3 to 9.9 for session 1 (p = 0.05) and 6.8 to 9.7 (p < 0.001) for session two. Through the workshop, participant scores also increased in research capacity skills, confidence, and their understanding of conducting research in the community. The workshop, co-curated and led by rural community leaders and researchers from Siteman Cancer Center, successfully increased knowledge of and interest in building cancer research capacity. Lessons from our work can inform the implementation of similar programs that address rural cancer health through research and community capacity building between rural community partners and urban cancer centers.
| S-EPMC10315419 | biostudies-literature
Project description:IntroductionCurtis Bay (CB) is an environmental justice (EJ) community in South Baltimore. With a high concentration of industrial polluters and compounding non-chemical stressors, CB has experienced socioeconomic, quality of life, and health burdens for over 100 years. Today, these polluters include the open-air CSX Coal Terminal, waste-to-energy incinerators, and heavy diesel traffic through residential areas. The Community of Curtis Bay Association, Free Your Voice, and South Baltimore Community Land Trust are local organizations enacting a vision for equitable, healthy, and community-led development without industrial encroachment. In response to community-identified EJ concerns and an explosion at the CSX Coal Terminal, CB community groups partnered with academic researchers to develop a community-driven hyperlocal air monitoring and capacity building approach. This paper describes this approach to characterizing hyperlocal air quality in CB, building bridges between community residents and regulatory agencies, and nurturing a cohesive and effective community-academic partnership toward EJ.MethodsUsing hyperlocal air monitoring, we are collecting real-time air pollution (particulate matter, black carbon, and ground-level gas species) and meteorological data from 15 low-cost sensors in residential and industrial areas of CB. We also use trail cameras to record activities at the CSX Coal Terminal. We merge air pollution and industrial activity data to evaluate the following: overall air quality in CB, multi-air pollutant profiles of elevated events, spatiotemporal changes in air quality in the community, patterns of industrial activity, and potential correlations between air quality and observed industrial activity. Members of our partnership also lead a high school course educating students about the history and ongoing efforts of the EJ movement in their community. Students in this course learn how to employ qualitative and quantitative data collection and analysis methods to bring scientific support to community EJ concerns.Results and discussionOur hyperlocal air monitoring network and community-academic partnership are continuing to evolve and have already demonstrated the ability to respond to community-identified EJ issues with real-time data while developing future EJ leaders. Our reflections can assist other community and academic groups in developing strong and fruitful partnerships to address similar EJ issues.
| S-EPMC10720608 | biostudies-literature
Project description:BackgroundLack of access to oral health care is a significant burden for disadvantaged populations, yet rarely draws the attention of policymakers or community leaders.ObjectivesTo understand how UNITED SIKHS identified oral health care as a priority need through its involvement in community-based participatory research (CBPR) initiatives and local data collection, thereby building its capacity to lead participatory oral health projects.MethodsThe foundation for the partnership between UNITED SIKHS and the New York University (NYU) Prevention Research Center (PRC) was the joint implementation of a CBPR project to prevent diabetes in the Sikh Asian Indian community. Project partners also included a community coalition composed of religious leaders, health providers, members of the media, and dental students and faculty at the NYU College of Dentistry (NYU Dentistry). A community needs and resources assessment survey was jointly developed and conducted in 2010 to better understand health needs in the Sikh community.ResultsFewer than one-half of the Sikh participants (43.0%) reported ever receiving a check-up or screening by a dentist, and of those who did, only one-half (50.0%) reported that it occurred in the past 12 months. Upon clinical assessment, more than one-half of Sikh adults (58.2%) had untreated dental decay. The collection and analysis of local data motivated UNITED SIKHS to develop new priorities based upon the findings.ConclusionsUNITED SIKHS applied for and received external funding to lead a CBPR project that developed, implemented, evaluated, and disseminated a culturally tailored oral health and healthy living curriculum for the Sikh Asian Indian community.
| S-EPMC5898636 | biostudies-literature
Project description:The Patient-Centered Outcomes Research Institute (PCORI) recently launched PCORnet to establish a single inter-operable multicenter data research network that will support observational research and randomized clinical trials. This paper provides an overview of the patient-powered research networks (PPRNs), networks of patient organizations focused on a particular health condition that are interested in sharing health information and engaging in research. PPRNs will build on their foundation of trust within the patient communities and draw on their expertise, working with participants to identify true patient-centered outcomes and direct a patient-centered research agenda. The PPRNs will overcome common challenges including enrolling a diverse and representative patient population; engaging patients in governance; designing the data infrastructure; sharing data securely while protecting privacy; prioritizing research questions; scaling small networks into a larger network; and identifying pathways to sustainability. PCORnet will be the first distributed research network to bring PCOR to national scale.
| S-EPMC4078295 | biostudies-literature
Project description:BackgroundWhile community participation is an established pro-equity approach in Primary Health Care (PHC), it can take many forms, and the central category of power is under-theorised. The objectives were to (a) conduct theory-informed analysis of community power-building in PHC in a setting of structural deprivation and (b) develop practical guidance to support participation as a sustainable PHC component.MethodsStakeholders representing rural communities, government departments and non-governmental organisations engaged through a participatory action research (PAR) process in a rural sub-district in South Africa. Three reiterative cycles of evidence generation, analysis, action, and reflection were progressed. Local health concerns were raised and framed by community stakeholders, who generated new data and evidence with researchers. Dialogue was then initiated between communities and the authorities, with local action plans coproduced, implemented, and monitored. Throughout, efforts were made to shift and share power, and to adapt the process to improve practical, local relevance. We analysed participant and researcher reflections, project documents, and other project data using power-building and power-limiting frameworks.ResultsCo-constructing evidence among community stakeholders in safe spaces for dialogue and cooperative action-learning built collective capabilities. The authorities embraced the platform as a space to safely engage with communities and the process was taken up in the district health system. Responding to COVID-19, the process was collectively re-designed to include a training package for community health workers (CHWs) in rapid PAR. New skills and competencies, new community and facility-based alliances and explicit recognition of CHW roles, value, and contribution at higher levels of the system were reported following the adaptations. The process was subsequently scaled across the sub-district.ConclusionsCommunity power-building in rural PHC was multidimensional, non-linear, and deeply relational. Collective mindsets and capabilities for joint action and learning were built through a pragmatic, cooperative, adaptive process, creating spaces where people could produce and use evidence to make decisions. Impacts were seen in demand for implementation outside the study setting. We offer a practice framework to expand community power in PHC: (1) prioritising community capability-building, (2) navigating social and institutional contexts, and (3) developing and sustaining authentic learning spaces.
| S-EPMC10189714 | biostudies-literature
Project description:Background: Alcohol and other drug (AOD) abuse is a major public health challenge disproportionately affecting marginalised communities. Involving communities in the development of responses can contribute to acceptable solutions.Objectives: To: (1) document forms, processes, and contexts of engaging communities to nominate health concerns and generate new knowledge for action; (2) further build participation in the local health system by reflecting on and adapting the process.Methods: PAR was progressed with 48 community stakeholders across three rural villages in the MRC/Wits Agincourt Health and Socio Demographic Surveillance System (HDSS) in Mpumalanga, South Africa. A series of workshops explored community-nominated topics, systematised lived experience into shared accounts and considered actions to address problems identified. Photovoice was also used to generate visual evidence. Narrative and visual data were thematically analysed, situated within practice frameworks, and learning and adaption elicited.Results: AOD abuse was identified as a topic of high priority. It was understood as an entrenched social problem with destructive effects. Biopsychosocial impacts were mapped and related to unemployment, poverty, stress, peer pressure, criminal activity, corruption, and a proliferating number of taverns. Integrated action agendas were developed focussed on demand, supply, and harm reduction underpinned by shared responsibility among community, state, and non-state actors. Community stakeholders appreciated systematising and sharing knowledge, taking active roles, developing new skills in planning and public speaking, and progressing shared accountability processes. Expectations required sensitive management, however.Conclusion: There is significant willingness and capacity among community stakeholders to work in partnership with authorities to address priority health concerns. As a process, participation can help to raise and frame issues, which may help to better inform action and encourage shared responsibility. Broader understandings of participation require reference to, and ultimately transfer of power towards, those most directly affected, developing community voice as continuous processes within social and political environments.
| S-EPMC7067166 | biostudies-literature
Project description: Not available
| S-EPMC10501667 | biostudies-literature
Project description:The Southeastern United States has the lowest kidney transplant rates in the nation, and racial disparities in kidney transplant access are concentrated in this region. The Southeastern Kidney Transplant Coalition (SEKTC) of Georgia, North Carolina, and South Carolina is an academic and community partnership that was formed with the mission to improve access to kidney transplantation and reduce disparities among African American (AA) end stage renal disease (ESRD) patients in the Southeastern United States.We describe the community-based participatory research (CBPR) process utilized in planning the Reducing Disparities In Access to kidNey Transplantation (RaDIANT) Community Study, a trial developed by the SEKTC to reduce health disparities in access to kidney transplantation among AA ESRD patients in Georgia, the state with the lowest kidney transplant rates in the nation. The SEKTC Coalition conducted a needs assessment of the ESRD population in the Southeast and used results to develop a multicomponent, dialysis facility-randomized, quality improvement intervention to improve transplant access among dialysis facilities in GA. A total of 134 dialysis facilities are randomized to receive either: (1) standard of care or "usual" transplant education, or (2) the multicomponent intervention consisting of transplant education and engagement activities targeting dialysis facility leadership, staff, and patients within dialysis facilities. The primary outcome is change in facility-level referral for kidney transplantation from baseline to 12 months; the secondary outcome is reduction in racial disparity in transplant referral.The RaDIANT Community Study aims to improve equity in access to kidney transplantation for ESRD patients in the Southeast.Clinicaltrials.gov number NCT02092727.
| S-EPMC4230631 | biostudies-literature
Project description:ObjectivesThe NIH All of Us Research Program (All of Us) is engaging a diverse community of more than 10 000 registered researchers using a robust engagement ecosystem model. We describe strategies used to build an ecosystem that attracts and supports a diverse and inclusive researcher community to use the All of Us dataset and provide metrics on All of Us researcher usage growth.Materials and methodsResearcher audiences and diversity categories were defined to guide a strategy. A researcher engagement strategy was codeveloped with program partners to support a researcher engagement ecosystem. An adapted ecological model guided the ecosystem to address multiple levels of influence to support All of Us data use. Statistics from the All of Us Researcher Workbench demographic survey describe trends in researchers' and institutional use of the Workbench and publication numbers.ResultsFrom 2022 to 2024, some 13 partner organizations and their subawardees conducted outreach, built capacity, or supported researchers and institutions in using the data. Trends indicate that Workbench registrations and use have increased over time, including among researchers underrepresented in the biomedical workforce. Data Use and Registration Agreements from minority-serving institutions also increased.DiscussionAll of Us built a diverse, inclusive, and growing research community via intentional engagement with researchers and via partnerships to address systemic data access issues. Future programs will provide additional support to researchers and institutions to ameliorate All of Us data use challenges.ConclusionThe approach described helps address structural inequities in the biomedical research field to advance health equity.
| S-EPMC11648709 | biostudies-literature
Project description:BackgroundDespite international evidence supporting community participation in health for improved health outcomes and more responsive and equitable health systems there is little practical evidence on how to do this. This work sought to understand the process involved in collective implementation of a health-related local action plan developed by multiple stakeholders.MethodsCommunities, government departments and non-government stakeholders convened in three iterative phases of a participatory action research (PAR) learning cycle. Stakeholders were involved in problem identification, development, and implementation of a local action plan, reflection on action, and reiteration of the process. Participants engaged in reflective exercises, exploring how factors such as power and interest impacted success or failure.ResultsThe local action plan was partially successful, with three out of seven action items achieved. High levels of both power and interest were key factors in the achievement of action items. For the achieved items, stakeholders reported that continuous interactions with one another created a shift in both power and interest through ownership of implementation processes. Participants who possessed significant power and influence were able to leverage resources and connections to overcome obstacles and barriers to progress the plan. Lack of financial support, shifting priorities and insufficient buy-in from stakeholders hindered implementation.ConclusionThe process offered new ways of thinking and stakeholders were supported to generate local evidence for action and learning. The process also enabled exploration of how different stakeholders with different levels of power and interest coalesce to design, plan, and act on evidence. Creation of safe spaces was achievable, meanwhile changing stakeholders' level of power and interest was possible but challenging. This study suggests that when researchers, service providers and communities are connected as legitimate participants in a learning platform with access to information and decision-making, a shift in power and interest may be feasible.
| S-EPMC10374036 | biostudies-literature