Building capacity for community-based participatory research to address cancer disparities: Case report from a Community Networks Program Center.
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SUBMITTER: Brown LD
PROVIDER: S-EPMC8641647 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BACKGROUND:Lack of access to oral health care is a significant burden for disadvantaged populations, yet rarely draws the attention of policymakers or community leaders. OBJECTIVES:To 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. METHODS:The 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. RESULTS:Fewer 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. CONCLUSIONS:UNITED 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: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: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:This paper describes the development and feasibility of the Community Based Research Infrastructure to Better Science (CRIBS) training. The goal of this training program was to help new or existing community-academic teams to build strong partnerships and successfully develop together fundable research projects focused on breast cancer environmental causes and disparities. A comprehensive mixed-methods participatory approach was utilized to assess the training. Twenty-two community-academic teams applied for the training program; twelve teams were enrolled. All teams completed the training and subsequently submitted research applications for funding. All components of the training received high ratings and positive qualitative comments. Self-rated competency in all of the learning domains increased during the training. Four (33%) of teams were successful in their first attempt to garner research funding, and six (50%) were eventually successful. The evaluation of CRIBS found it to have successfully achieved all four goals of the training: (1) Twelve new CBPR (community-based participatory research) teams, (2) improved knowledge about CBPR and science, (3) twelve submitted grant proposals in the first year, and (4) six (50%) successfully funded research projects.
| S-EPMC6888545 | biostudies-literature
Project description:BackgroundThe New York University Health Sciences Library data services team had developed educational material for research data management and data visualization and had been offering classes at the request of departments, research groups, and training programs, but many members of the medical center were unaware of these library data services. There were also indications of data skills gaps in these subject areas and other data-related topics.Case presentationThe data services team enlisted instructors from across the medical center with data expertise to teach in a series of classes hosted by the library. We hosted eight classes branded as a series called "Data Day to Day." Seven instructors from four units in the medical center, including the library, taught the classes. A multipronged outreach approach resulted in high turnout. Evaluations indicated that attendees were very satisfied with the instruction, would use the skills learned, and were interested in future classes.ConclusionsData Day to Day met previously unaddressed data skills gaps. Collaborating with outside instructors allowed the library to serve as a hub for a broad range of data instruction and to raise awareness of library services. We plan to offer the series three times in the coming year with an expanding roster of classes.
| S-EPMC5370612 | biostudies-literature
Project description:Advancing precision medicine relies in part on examining populations that may exhibit unique genetic variants that impact clinical outcomes. Failure to include diverse populations in genomic-based research represents a health disparity. We implemented a community-based participatory research (CBPR) process with the Hmong community in Minnesota, who were refugees from Laos, in order to assess the feasibility of conducting genomic and pharmacogenomic-based research for genetic variants that are relevant to the Hmong community. Our Hmong Genomics Board, consisting of Hmong and non-Hmong professionals, used CBPR principles and built on previous formative research to create and implement culturally and linguistically appropriate informed consent processes for Hmong people at six community venues. The Board chose genetic variants for diabetes risk and warfarin response as relevant to the community. The Institutional Review Board approved aggregate but not individual return of results. Two hundred thirty-seven Hmong participants with mean (range) age of 30.2 (18-81) years and diverse levels of education (22% without and 75% with high-school education) provided saliva for genetic (DNA) analyses. Eighty-five percent of participants agreed to store DNA for future analyses, 82% agreed to share DNA with other researchers, and 78% agreed to be contacted for future studies. Twenty-five elders refused to participate because they wanted individual results. Aggregate results were shared with all participants. This CBPR approach proved highly successful to obtain informed consent and recruit a sample from the Hmong community for a genomic and pharmacogenomic study. Investment in the CBPR process may prove successful to address the gap of genomic information in under-represented communities.
| S-EPMC5386914 | biostudies-literature
Project description:Environmental justice (EJ) efforts aimed at capacity building are essential to addressing environmental health disparities; however, limited attention has been given to describing these efforts. This study reports findings from a scoping review of community-academic partnerships and community-led efforts to address environmental inequities related to air, water, and land pollution in the United States. Literature published in peer-reviewed journals from January 1986 through March 2018 were included, and community capacity theory was applied as a framework for understanding the scope of capacity-building and community change strategies to address EJ concerns. Paired teams of independent analysts conducted a search for relevant articles (n = 8452 citations identified), filtered records for content abstraction and possible inclusion (n = 163) and characterized selected studies (n = 58). Most articles implemented activities that were aligned with community capacity dimensions of citizen participation (96.4%, n = 53), community power (78%, n = 45), leadership (78%, n = 45), and networks (81%, n = 47); few articles identified a direct policy change (22%, n = 13), and many articles discussed the policy implications of findings for future work (62%, n = 36). This review synthesizes three decades of efforts to reduce environmental inequities and identifies strategic approaches used for strengthening community capacity.
| S-EPMC7312702 | biostudies-literature
Project description:Inadequate research capacity impedes the development of evidence-based health programming in sub-Saharan Africa. However, funding for research capacity building (RCB) is often insufficient and restricted, limiting institutions' ability to address current RCB needs. The Doris Duke Charitable Foundation's African Health Initiative (AHI) funded Population Health Implementation and Training (PHIT) partnership projects in five African countries (Ghana, Mozambique, Rwanda, Tanzania and Zambia) to implement health systems strengthening initiatives inclusive of RCB.Using Cooke's framework for RCB, RCB activity leaders from each country reported on RCB priorities, activities, program metrics, ongoing challenges and solutions. These were synthesized by the authorship team, identifying common challenges and lessons learned.For most countries, each of the RCB domains from Cooke's framework was a high priority. In about half of the countries, domain specific activities happened prior to PHIT. During PHIT, specific RCB activities varied across countries. However, all five countries used AHI funding to improve research administrative support and infrastructure, implement research trainings and support mentorship activities and research dissemination. While outcomes data were not systematically collected, countries reported holding 54 research trainings, forming 56 mentor-mentee relationships, training 201 individuals and awarding 22 PhD and Masters-level scholarships. Over the 5 years, 116 manuscripts were developed. Of the 59 manuscripts published in peer-reviewed journals, 29 had national first authors and 18 had national senior authors. Trainees participated in 99 conferences and projects held 37 forums with policy makers to facilitate research translation into policy.All five PHIT projects strongly reported an increase in RCB activities and commended the Doris Duke Charitable Foundation for prioritizing RCB, funding RCB at adequate levels and time frames and for allowing flexibility in funding so that each project could implement activities according to their trainees' needs. As a result, many common challenges for RCB, such as adequate resources and local and international institutional support, were not identified as major challenges for these projects. Overall recommendations are for funders to provide adequate and flexible funding for RCB activities and for institutions to offer a spectrum of RCB activities to enable continued growth, provide adequate mentorship for trainees and systematically monitor RCB activities.
| S-EPMC5763288 | biostudies-literature
Project description:The study purpose is to evaluate the effectiveness of a set of culturally appropriate, faith-placed lay health advisor interventions aimed at facilitating smoking cessation and increasing cancer screening among Appalachian participants.
| 2108167 | ecrin-mdr-crc