Recognizing Cross-Institutional Fiscal and Administrative Barriers and Facilitators to Conducting Community-Engaged Clinical and Translational Research.

PURPOSE: This qualitative study examined fiscal and administrative (i.e., pre- and post-award grants process) barriers and facilitators to community-engaged research among stakeholders across 4 Clinical and Translational Science Awards (CTSA) institutions. METHOD: A purposive sample of 24 key informants from 3 stakeholder groups-community partners, academic researchers, and research administrators-from the CTSA institutions at the University of North Carolina at Chapel Hill, Medical University of South Carolina, Vanderbilt University Medical Center, and Yale University participated. Semistructured interviews were conducted in March-July 2018, including questions about perceived challenges and best practices in fiscal and administrative processes in community-engaged research. Transcribed interviews were independently reviewed and analyzed using the Rapid Assessment Process to facilitate key theme and quote identification. RESULTS: Community partners were predominantly Black, academic researchers and research administrators were predominantly White, and women made up two-thirds of the overall sample. Five key themes were identified: level of partnership equity, partnership collaboration and communication, institutional policies and procedures, level of familiarity with varying fiscal and administrative processes, and financial management expectations. No stakeholders reported best practices for the institutional policies and procedures theme. Cross-cutting challenges included communication gaps between stakeholder groups; lack of or limits in supporting community partners' fiscal capacity; and lack of collective awareness of each stakeholder group's processes, procedures, and needs. Cross-cutting best practices centered on shared decision making and early and timely communication between all stakeholder groups in both pre- and post-award processes. CONCLUSIONS: Findings highlight the importance of equitable processes, triangulated communication, transparency, and recognizing and respecting different financial management cultures within community-engaged research. This work can be a springboard used by CTSA institutions to build on available resources that facilitate co-learning and discussions between community partners, academic researchers, and research administrators on fiscal readiness and administrative processes for improved community-engaged research partnerships.

Incorporating Community Engagement in Primary Care Research Training: Eleven-Year Outcomes.

BACKGROUND: In response to a local workforce need for community-engaged scholars, a community-based participatory research (CBPR) curriculum was incorporated into an established primary care research fellowship. The program prepares researchers to partner with at-risk communities to address root causes and cultural, linguistic, and systems barriers that contribute to health disparities. OBJECTIVES: To describe the context, design, implementation and evaluation of the Academic Fellowship in Primary Care and Community-Engaged Research. METHODS: The traditional primary care research curriculum was enhanced with expanded enrollment, including social scientists with complementary expertise to physician fellows; a structured CBPR seminar series; involvement of fellows in mentored community-academic partnership projects with progression to independence; and relevant teaching and mentoring experiences. EVALUATION: Between 2007 and 2016, 22 fellows enrolled, with 16 in the CBPR track. Fellows demonstrated significant prepost gain in self-assessed competency in CBPR. During their 2- to 3-year training period, each CBPR fellow developed at least one community-academic partnership project, and they collectively produced more than 50 articles and 70 regional or national presentations, and mentored 29 medical student projects. Graduates have assumed leadership positions in academia, and have improved institutional capacity for community-engaged research, teaching, and practice. CONCLUSIONS: Important factors related to success and feasibility of CBPR training within a 2- to 3-year timeframe were having dedicated, experienced faculty mentors with existing authentic, trusted community partners, and dedicated funding for new community-academic partnership projects. This model can prepare primary care researchers and teachers to genuinely collaborate with vulnerable communities to address important health priorities and advance health equity.

"We make a direct impact on people's lives": Youth empowerment in the context of a youth-led participatory budgeting project.

Participatory budgeting [PB] is a democratic process whereby community members determine how to spend governmental funds. Youth-led PB is relatively new, occurring in select U.S. cities. During youth-led PB, youth collect ideas, develop proposals, and advertise community improvement projects for which they, citywide, cast deciding votes. The study examined opportunities for the empowerment youth at each stage of a youth-led PB project. Data collection included individual interviews with 31 youths and adult stakeholders, 3 focus groups with youths, and 7 observations of meetings. The data were analyzed using consensual qualitative research methods. Findings align well with the psychological empowerment literature and demonstrate several opportunities for empowerment throughout the PB project, including feeling in charge of the process, understanding and allocating resources, and influencing positive community change. Findings also demonstrate potential barriers to empowerment, including understanding bureaucratic decision making, and influencing policy. PB is relevant to furthering our understanding of the empowerment of youth. The youths who participated in the present study expressed feelings of competence, purpose, and an ability to use the skills learned to engage fellow youths in the PB process. Additional empirical research is needed to examine the dimensions of empowerment at each stage of the PB process.

A Community-Based Approach to Cervical Cancer Prevention: Lessons Learned in Rural Guatemala.

BACKGROUND: One international and three local organizations developed the Santa Ana Women's Health Partnership (SAWHP) to address cervical cancer in Santa Ana Huista, Huehuetenango, Guatemala. This paper describes the structure, outcomes, and lessons learned from our community partnership and program. METHODS: The community partnership developed a singlevisit approach (SVA) program that guided medically underserved women through screening and treatment of cervical cancer. LESSONS LEARNED: The program promoted acceptability of SVA among rural women by engaging local female leaders and improving access to screening services. The program's approach focused on maximizing access and generated interest beyond the coverage area. Distrust among the community partners and weak financial management contributed to the program's cessation after 4 years. CONCLUSIONS: The SAWHP design may guide future implementation of cervical cancer screening programs to reach medically underserved women. Open, ongoing dialogue among leaders in each partner institution is paramount to success.

Dark clouds in co-creation, and their silver linings practical challenges we faced in a participatory project in a resource-constrained community in India, and how we overcame (some of) them.

BACKGROUND: While any type of field-based research is challenging, building action-oriented, participatory research in resource-constrained settings can be even more so. OBJECTIVE: In this article, we aim to examine and provide insights into some of the practical challenges that were faced during the course of a participatory project based in two non-notified slums in Bangalore, India, aiming to build solutions to indoor air pollution from cooking on traditional cook stoves. METHODS: The article draws upon experiences of the authors as field researchers engaged in a community-based project that adopted an exploratory, iterative design to its planning and implementation, which involved community visits, semi-structured interviews, prioritization workshops, community forums, photo voice activities, chulha-building sessions and cooking trials. RESULTS: The main obstacles to field work were linked to fostering open, continued dialogue with the community, aimed at bridging the gap between the 'scientific' and the 'local' worlds. Language and cultural barriers led to a reliance on interpreters, which affected both the quality of the interaction as well as the relationship between the researchers and the community that was built out of that interaction. The transience in housing and location of members of the community also led to difficulties in following up on incomplete information. Furthermore, facilitating meaningful participation from the people within the context of restricted resources, differing priorities, and socio-cultural diversity was particularly challenging. These were further compounded by the constraints of time and finances brought on by the embeddedness of the project within institutional frameworks and conventional research requirements of a fixed, pre-planned and externally determined focus, timeline, activities and benchmarks for the project. CONCLUSIONS: This article calls for revisiting of scientific conventions and funding prerequisites, in order to create spaces that support flexible, emergent and adaptive field-based research projects which can respond effectively to the needs and priorities of the community.

Enhancing the Science of Discovery in Public Health Systems and Services Research Through Participatory Research Methods.

The objective was to combine cost analysis and participatory research to identify actionable cost-saving opportunities in public health services for sexually transmitted infections (STI). This study used a mixed-methods approach of analyzing Florida public health data, combined with participatory research approaches to data collection including quantitative web-based surveys, qualitative in-depth interviews, and group discussions. Florida surveillance and administrative data on STIs and county health department (CHD) costs of services for 2012 were analyzed in addition to primary data collected from all Florida CHDs during 2014 and 2015. Variations in STI service delivery practices were the primary variables of concern. Variations in practices, rather than demographic factors such as size of county or STI rates, were associated with variations in cost. Five identified variations in practices were rated for cost savings, no or minimal adverse health impact, and ease of implementation. Following discussion of the ratings by CHDs, texting STI test results was ranked highest for quality improvement implementation initiatives. This study provides a compelling example of how in-depth qualitative and quantitative follow-up research focused on discovery and development with the practice community provides critical insights for interpreting administrative data and drawing accurate reality-based conclusions. The research design was intended to be a highly adaptive research approach that adjusts to the political and technical circumstances of delivering public health services. The extensive stakeholder engagement throughout all phases the study enables this research to address and overcome potential barriers and challenges to actionable findings.

Health Extension and Clinical and Translational Science: An Innovative Strategy for Community Engagement.

Health Extension Regional Officers (HEROs) through the University of New Mexico Health Sciences Center (UNMHSC) help to facilitate university-community engagement throughout New Mexico. HEROs, based in communities across the state, link priority community health needs with university resources in education, service, and research. Researchers' studies are usually aligned with federal funding priorities rather than with health priorities expressed by communities. To help overcome this misalignment, the UNM Clinical and Translational Science Center (CTSC) provides partial funding for HEROs to bridge the divide between research priorities of UNMHSC and health priorities of the state's communities. A bidirectional partnership between HEROs and CTSC researchers was established, which led to: 1) increased community engaged studies through the CTSC, 2) the HERO model itself as a subject of research, 3) a HERO-driven increase in local capacity in scholarship and grant writing, and 4) development of training modules for investigators and community stakeholders on community-engaged research. As a result, 5 grants were submitted, 4 of which were funded, totaling $7,409,002.00, and 3 research articles were published. Health extension can serve as a university-funded, community-based bridge between community health needs and Clinical and Translational Science Award (CTSA) research capacity, opening avenues for translational research.

Community-based participatory research: understanding a promising approach to addressing knowledge gaps in palliative care.

Concern over the need for effective and accessible healthcare for individuals with advanced chronic illness has drawn attention to the significant gaps in our knowledge of palliative medicine. To advance our understanding of this field, community-based participatory research (CBPR) is proposed as a tool for future research initiatives. This paper offers a rationale for how CBPR may be employed to address specific gaps in palliative care research. Several examples where this approach has been used previously are described, and potential obstacles to implementing this research method are delineated. Despite challenges to incorporating CBPR to palliative care research, this approach holds substantial potential to advance our current understanding of the field and promote sensitivity for future programs, practices and policies.

Community-based Participatory Research Is Needed to Address Pulmonary Health Disparities.

Socioeconomic and racial disparities in the outcomes of medical management remain common across pulmonary diseases in the United States and worldwide. Acknowledging this, the American Thoracic Society recently put forth recommendations to advance respiratory health equity. Through engagement of vulnerable communities in search of collaborative solutions to improve health disparities, community-based participatory research embodies concepts essential to the American Thoracic Society mission for respiratory health equity. The purpose of this commentary is to provide an overview of the principles of community-based participatory research and the application of this approach to addressing inequity in the outcomes of treatment for lung disease. Community-based participatory research aims to decrease health disparities by recognizing the social and ecological paradigms of health care and by partnering community members with academic researchers in all aspects of the research process. Community partners are uniquely poised to offer insight into local culture, circumstances that guide health behaviors, and other challenges to improve their own community's health. Sustainable interventions, either through strengthening existing community assets or through community empowerment and local capacity building throughout the research process, are essential to the success of community-based participatory research. The National Institutes of Health and other funding agencies offer funding opportunities to support specific interventions aimed at engaging community members in the research process. In pulmonary medicine, community-based initiatives have focused primarily on improving pediatric asthma outcomes. Using a community-based approach in adult asthma and other pulmonary diseases could be an ideal manner in which to decrease pulmonary health disparities.

Challenges With Research Contract Negotiations in Community-Based Cancer Research.

PURPOSE: Community-based research programs face many barriers to participation in clinical trials. Although the majority of people with cancer are diagnosed and treated in the community setting, only roughly 3% are enrolled onto clinical trials. Research contract and budget negotiations have been consistently identified as time consuming and a barrier to participation in clinical trials. ASCO's Community Research Forum conducted a survey about specific challenges of research contract and budget negotiation processes in community-based research settings. The goal was to ultimately identify potential solutions to these barriers. METHODS: A survey was distributed to 780 community-based physician investigators and research staff. The survey included questions to provide insight into contract and budget negotiation processes and perceptions about related barriers. RESULTS: A total of 77% of the 150 respondents acknowledged barriers in the process. Respondents most frequently identified budget-related issues (n = 133), inefficiencies in the process (n = 80), or legal review and negotiation issues (n = 70). Of the respondents, 44.1% indicated that contract research organizations made the contract negotiations process harder for their research program, and only 5% believed contract research organizations made the process easier. The contract negotiations process is perceived to be impeded by sponsors through underestimation of costs, lack of flexibility with the contract language, and excessive delays. CONCLUSION: Improving clinical trial activation processes and reducing inefficiencies would be beneficial to all interested stakeholders, including patients who may ultimately stand to benefit from participation in clinical trials. The following key recommendations were made: standardization of contracts and negotiation processes to promulgate transparency and efficiencies, improve sponsor processes to minimize burden on sites, create and promote use of contract templates and best practices, and provide education and consultation.

Health and medical research funding agencies' promotion of public engagement within research: a qualitative interview study exploring the United Kingdom context.

BACKGROUND: Public engagement (PE) has become a common feature of many liberal governmental agendas worldwide. Since the turn of this century there has been a succession of United Kingdom policy initiatives to encourage research funding agencies, universities and researchers to reconsider how they engage with citizens and communities. Although most funding agencies now explicitly promote PE within research, little empirical work has been carried out in this area. In this study, we explored why and how health and medical research funding agencies in the United Kingdom have interpreted and implemented their role to promote PE within research. METHODS: Semi-structured interviews were carried out with 30 key informants from 10 agencies that fund health or medical research. Data were also gathered from agencies' websites and documentation. The analysis was based on the constant comparative method. RESULTS: Across agencies, we found that PE was being interpreted and operationalised in various different ways. The terminology used within funding agencies to describe PE seems to be flexibly applied. Disciplinary differences were evident both in the terminology used to describe PE and the drivers for PE highlighted by participants - with applied health science funders more aligned with participatory models of PE. Within the grant funding process PE was rarely systematically treated as a key component of research. In particular, PE was not routinely incorporated into the planning of funding calls. PE was more likely to be considered in the application and assessment phases, where it was largely appraised as a tool for enhancing science. Concerns were expressed regarding how to monitor and evaluate PE within research. CONCLUSIONS: This study suggests funding agencies working within specific areas of health and medicine can promote particular definitions of PE and aligned practices which determine the boundaries in which researchers working in these areas understand and practice PE. Our study also highlights how the research grant process works to privilege particular conceptions of PE and its purpose. Tensions are evident between some funders' core concepts of traditional science and PE, and they face challenges as they try to embed PE into long-standing systems that prioritise particular conceptions of 'scientific excellence' in research.

Bringing Community and Academic Scholars Together to Facilitate and Conduct Authentic Community Based Participatory Research: Project UNITED.

Cultural competency, trust, and research literacy can affect the planning and implementation of sustainable community-based participatory research (CBPR). The purpose of this manuscript is to highlight: (1) the development of a CBPR pilot grant request for application; and (2) a comprehensive program supporting CBPR obesity-related grant proposals facilitated by activities designed to promote scholarly collaborations between academic researchers and the community. After a competitive application process, academic researchers and non-academic community leaders were selected to participate in activities where the final culminating project was the submission of a collaborative obesity-related CBPR grant application. Teams were comprised of a mix of academic researchers and non-academic community leaders, and each team submitted an application addressing obesity-disparities among rural predominantly African American communities in the US Deep South. Among four collaborative teams, three (75%) successfully submitted a grant application to fund an intervention addressing rural and minority obesity disparities. Among the three submitted grant applications, one was successfully funded by an internal CBPR grant, and another was funded by an institutional seed funding grant. Preliminary findings suggest that the collaborative activities were successful in developing productive scholarly relationships between researchers and community leaders. Future research will seek to understand the full-context of our findings.

Community Engagement Studios: A Structured Approach to Obtaining Meaningful Input From Stakeholders to Inform Research.

PROBLEM: Engaging communities in research increases its relevance and may speed the translation of discoveries into improved health outcomes. Many researchers lack training to effectively engage stakeholders, whereas academic institutions lack infrastructure to support community engagement. APPROACH: In 2009, the Meharry-Vanderbilt Community-Engaged Research Core began testing new approaches for community engagement, which led to the development of the Community Engagement Studio (CE Studio). This structured program facilitates project-specific input from community and patient stakeholders to enhance research design, implementation, and dissemination. Developers used a team approach to recruit and train stakeholders, prepare researchers to engage with stakeholders, and facilitate an in-person meeting with both. OUTCOMES: The research core has implemented 28 CE Studios that engaged 152 community stakeholders. Participating researchers, representing a broad range of faculty ranks and disciplines, reported that input from stakeholders was valuable and that the CE Studio helped determine project feasibility and enhanced research design and implementation. Stakeholders found the CE Studio to be an acceptable method of engagement and reported a better understanding of research in general. A tool kit was developed to replicate this model and to disseminate this approach. NEXT STEPS: The research core will collect data to better understand the impact of CE Studios on research proposal submissions, funding, research outcomes, patient and stakeholder engagement in projects, and dissemination of results. They will also collect data to determine whether CE Studios increase patient-centered approaches in research and whether stakeholders who participate have more trust and willingness to participate in research.

Research for improved health: variability and impact of structural characteristics in federally funded community engaged research.

BACKGROUND: Although there is strong scientific, policy, and community support for community-engaged research (CEnR)-including community-based participatory research (CBPR)-the science of CEnR is still developing. OBJECTIVE: To describe structural differences in federally funded CEnR projects by type of research (i.e., descriptive, intervention, or dissemination/policy change) and race/ethnicity of the population served. METHODS: We identified 333 federally funded projects in 2009 that potentially involved CEnR, 294 principal investigators/project directors (PI/PD) were eligible to participate in a key informant (KI) survey from late 2011 to early 2012 that asked about partnership structure (68% response rate). RESULTS: The National Institute on Minority Health & Health Disparities (19.1%), National Cancer Institute (NCI; 13.3%), and the Centers for Disease Control and Prevention (CDC; 12.6%) funded the most CEnR projects. Most were intervention projects (66.0%). Projects serving American Indian or Alaskan Native (AIAN) populations (compared with other community of color or multiple-race/unspecified) were likely to be descriptive projects (p<.01), receive less funding (p<.05), and have higher rates of written partnership agreements (p<.05), research integrity training (p<.05), approval of publications (p<.01), and data ownership (p<.01). AIAN-serving projects also reported similar rates of research productivity and greater levels of resource sharing compared with those serving multiple-race/unspecified groups. CONCLUSIONS: There is clear variability in the structure of CEnR projects with future research needed to determine the impact of this variability on partnering processes and outcomes. In addition, projects in AIAN communities receive lower levels of funding yet still have comparable research productivity to those projects in other racial/ethnic communities.

Enhancing stewardship of community-engaged research through governance.

OBJECTIVES: We explored the relationship of community-engaged research final approval type (tribal government, health board, or public health office (TG/HB); agency staff or advisory board; or individual or no community approval) with governance processes, productivity, and perceived outcomes. METHODS: We identified 294 federally funded community-engaged research projects in 2009 from the National Institutes of Health's Research Portfolio Online Reporting Tools, Centers for Disease Control and Prevention's Prevention Research Centers, and Native American Research Centers for Health databases. Two hundred (68.0%) investigators completed a survey about governance processes and productivity measures; 312 partners (77.2% of 404 invited) and 138 investigators (69.0% of 200 invited) completed a survey about perceived outcomes. RESULTS: Projects with TG/HB approval had increased likelihood of community control of resources (odds ratios [ORs] ≥ 4.80). Projects with other approvals had decreased likelihood of development or revision of institutional review board policies (ORs ≤ 0.37), having written agreements (ORs ≤ 0.17), and agreements about publishing (ORs ≤ 0.28), data use (ORs ≤ 0.17), and publishing approval (ORs ≤ 0.14). CONCLUSIONS: Community-engaged research projects with TG/HB approval had strong stewardship of project resources and agreements. Governance as stewardship protects community interests; thus, is an ethical imperative for communities, especially native communities, to adopt.

Evaluation of community-based systems for the surveillance of day three-positive Plasmodium falciparum cases in Western Cambodia.

BACKGROUND: Delayed clearance of Plasmodium falciparum parasites is used as an operational indicator of potential artemisinin resistance. Effective community-based systems to detect P. falciparum cases remaining positive 72 hours after initiating treatment would be valuable for guiding case follow-up in areas of known resistance risk and for detecting areas of emerging resistance. METHODS: Systems incorporating existing networks of village malaria workers (VMWs) to monitor day three-positive P. falciparum cases were piloted in three provinces in western Cambodia. Quantitative and qualitative data were used to evaluate the wider feasibility and sustainability of community-based surveillance of day three-positive P. falciparum cases. RESULTS: Of 294 day-3 blood slides obtained across all sites (from 297 day-0 positives), 63 were positive for P. falciparum, an overall day-3 positivity rate of 21%. There were significant variations in the systems implemented by different partners. Full engagement of VMWs and health centre staff is critical. VMWs are responsible for a range of individual tasks including preparing blood slides on day-0, completing forms, administering directly observed therapy (DOT) on days 0-2, obtaining follow-up slides on day-3 and transporting slides and paperwork to their supervising health centre. When suitably motivated, unsalaried VMWs are willing and able to produce good quality blood smears and achieve very high rates of DOT and day-3 follow-up. CONCLUSIONS: Community-based surveillance of day-3 P. falciparum cases is feasible, but highly intensive, and as such needs strong and continuous support, particularly supervision and training. The purpose and role of community-based day-3 surveillance should be assessed in the light of resource requirements; scaling-up would need to be systematic and targeted, based on clearly defined epidemiological criteria. To be truly comprehensive, the system would need to be extended beyond VMWs to other public and private health providers.