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 |
REPOSITORIES: biostudies-literature
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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: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:Cardiovascular diseases are the leading causes of morbidity and mortality worldwide, but implementation of evidence-based interventions for risk factors such as hypertension is lacking, particularly in low and middle income countries (LMICs). Building implementation research capacity in LMICs is required to overcome this gap. Members of the Global Research on Implementation and Translation Science (GRIT) Consortium have been collaborating in recent years to establish a research and training infrastructure in dissemination and implementation to improve hypertension care. GRIT includes projects in Ghana, Guatemala, India, Kenya, Malawi, Nepal, Rwanda, and Vietnam. We collected data from each site on capacity building activities using the Potter and Brough (2004) model, mapping formal and informal activities to develop (a) structures, systems and roles, (b) staff and infrastructure, (c) skills, and (d) tools. We captured information about sites' needs assessments and metrics plus program adaptations due to the COVID-19 pandemic. All sites reported capacity building activities in each layer of the Capacity Pyramid, with the largest number of activities in the Skills and Tools categories, the more technical and easier to implement categories. All sites included formal and informal training to build Skills. All sites included a baseline needs assessment to guide capacity building activities or assess context and inform intervention design. Sites implementing evidence-based hypertension interventions used common implementation science frameworks to evaluate implementation outcomes. Although the COVID-19 pandemic affected timelines and in-person events, all projects were able to pivot and carry out planned activities. Although variability in the activities and methods used existed, GRIT programs used needs assessments to guide locally appropriate design and implementation of capacity building activities. COVID-19 related changes were necessary, but strong collaborations and relationships with health ministries were maintained. The GRIT Consortium is a model for planning capacity building in LMICs.
| 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:ProblemAll trainees, especially those from historically minoritized backgrounds, experience stresses that may reduce their continuation in science, technology, engineering, math, and medicine (STEMM) careers. The Johns Hopkins University School of Medicine is one of ~45 institutions with a National Institutes of Health funded Postbaccalaureate Research Education Program (PREP) that provides mentoring and a year of fulltime research to prepare students from historically excluded groups for graduate school. Having experienced the conflation of stresses during the COVID-19 pandemic and related shutdown, we realized our program lacked a component that explicitly helped PREP Scholars recognize and cope with non-academic stresses (financial, familial, social, mental) that might threaten their confidence and success as scientists and future in STEMM.InterventionWe developed an early-intervention program to help Scholars develop life-long skills to become successful and resilient scientists. We developed a year-long series comprised of 9 workshops focused on community, introspection, financial fitness, emotional intelligence, mental health, and soft-skills. We recruited and compensated a cohort of PhD students and postdoctoral fellows to serve as Peer Mentors, to provide a community and the safest 'space' for Scholars to discuss personal concerns. Peer Mentors were responsible for developing and facilitating these Community-Building Wellness Workshops (CBWW).ContextCBWW were created and exectued as part of the larger PREP program. Workshops included a PowerPoint presentation by Peer Mentors that featured several case studies that prompted discussion and provided time for small-group discussions between Scholars and Peer Mentors. We also included pre- and post-work for each workshop. These touch-points helped Scholars cultivate the habit of introspection.ImpactThe CBWW exceeded our goals. Both Peer Mentors and Scholars experienced strong mutual support, and Scholars developed life-long skills. Notably, several Scholars who had been experiencing financial, mental or mentor-related stress immediately brought this to the attention of program leadership, allowing early and successful intervention. At the completion of CBWW, PREP Scholars reported implementing many workshop skills into practice, were reshaping their criteria for choosing future mentors, and evaluating career decisions. Strikingly, Peer Mentors found they also benefitted from the program as well, suggesting a potential larger scope for the role of CBWW in academia.Lessons learnedPeer Mentors were essential in creating a safe supportive environment that facilitated discussions, self-reflection, and self-care. Providing fair compensation to Peer Mentors for their professional mentoring and teaching contributions was essential and contributed meaningfully to the positive energy and impact of this program.
| S-EPMC10979910 | 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: Not available
| S-EPMC10621030 | 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