Envisioning the Future of Community-Engaged Research at Juniper Gardens Children’s Project and Beyond

OBJECTIVES/SPECIFIC AIMS: Community engagement is a commonly used term, but is complex in both meaning and application. In order to help academic institutions and administrators develop infrastructure to promote and support community engagement and to help investigators work productively with communities, this analysis discusses the major components of community engagement in research on both the institutional and individual project levels as well as the interplay between them. METHODS/STUDY POPULATION: A literature synthesis conducted by a community engagement in research committee at 1 CTSA institution that examined the myriad factors related to effective community engagement in research identified across multiple disciplines was used to distill the major factors identified, assesses the interplay of the identified factors, and produce a conceptual model to help administrators and investigators apply best practices in engaging communities in clinical and translational research. RESULTS/ANTICIPATED RESULTS: This work takes a concept—community engagement in research—that is often stated and discussed, but is highly complex and challenging to implement—and identifies and discusses the multiple, interrelated factors germane to it. The model illustrates that while community engagement in research is implemented in the context of individual projects, a deep and continual interplay between individual projects and the goals, capacity, and policies of research institutions is needed for rigorous, ethical, and effective community engagement. DISCUSSION/SIGNIFICANCE OF IMPACT: Results are presented through a conceptual framework which displays the major components needed for rigorous, ethical, and effective community engagement in clinical and translational research. In addition, the conceptual framework presented will provide assistance to those developing approaches to measure and evaluate institutional readiness for community engagement in research as well as the effectiveness of individual community engagement efforts.

Introductionmeaningful community engagement is increasingly being considered the major determinant of successful research, innovation and intervention uptake. Even though there is available literature recommending community engagement in health research, there are still knowledge gaps in how communities might be best engaged in Sub-Saharan Africa. We, therefore, synthesized the existing literature on the current practices, barriers and facilitators, ethical considerations, and gender mainstreaming in the engagement of communities in research in sub-Saharan Africa.Methodsthis synthesis was developed following the Preferred Reporting Items for Systematic review and Meta-Analysis (PRISMA). A combination of keywords and medical subject headings was used to search MEDLINE, EMBASE, Global Health Library through OVID SP, the Cochrane Library, PsychINFO, CINAHL, WHO Afro Library, WHO Global Index Medicus and the National Institute for Health Research, for all literature published between 1 January 2000 to 31 July 2021.Resultsthirty articles met our inclusion criteria. The key reported facilitators of effective community engagement in research included appropriate community entry and engagement of stakeholders. Barriers to effective community engagement in research included the availability of prohibitive cultural, historical and religious practices; geographical/spatial limitations, difficulties in planning and executing community engagement activities and communication barriers. Awareness creation and sensitization on the research through drama, social media, documentaries, and community durbars are some of the existing practices adopted in engaging communities in research. Gender mainstreaming was not considered appropriately in the engagement of communities in research, as only a few studies made provisions for gender considerations, and most of the time, interchanging gender for sex. Respect for autonomy, privacy and informed consent were the main ethical issues reported.Conclusiongender mainstreaming and ethical standards were reported as important, but not explored in depth. Gender as a social construct needs to be carefully integrated in the entire research cycle. Clear ethical concerns within a research project have to be co-discussed by the research team, community members and potential research participants.

The research question was what studies are available that have assessed community engagement in the health services research on soil-transmitted helminths? We aimed to synthesise evidence on how communities were engaged in health services research on soil-transmitted helminths in low-and-middle-income countries of the Asia-Pacific Region. We focused on this region because soil-transmitted helminths are endemic, and their burden is significant in this region. This review was conducted according to the Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) checklist. Relevant studies were searched in health-related databases including PubMed, Ovid, and Google Scholar. We selected studies based on the selection criteria set for this review. We collected textual information about the type of health services research, the degree of community engagement, the research phases involved, and the barriers/enablers affecting community engagement in research since they are pertinent to our review question and objective. Ten studies from seven countries in the Asia Pacific region were identified for this review. Albeit with variation in the extent of their involvement, various forms of communities/groups within communities were included such as Aboriginal communities, local communities, school children and their parents, school teachers and headmasters of schools, heads of villages, religious leaders, and so on. Overall, community engagement in health services research focused on of soil-transmitted helminths was limited. Six studies (60%) had collaboration at ‘developing methodology’, mainly through an explanation of the objectives of the study or study process to be conducted. Seven studies (70%) revealed community participation in soil-transmitted helminths at the “data collection” stage. Only one study (10%) documented that a community leader was involved as a co-author, reflecting an involvement in ‘report writing’ and further ‘dissemination’. Findings suggest that there were various forms of community engagement in various aspects of the health services research context. Overall, there was moderate level of participation, but there was insufficient information on the partnership between various stakeholders, which prevented in-depth analysis of the engagement. Future health services research on soil-transmitted helminth interventions needs to be carefully planned, well designed, grounded in principles of community engagement, and designed methodologically to allow in-depth participation by communities in all stages of the research.

The research question was what studies are available that have assessed community engagement in the health services research on soil-transmitted helminths? We aimed to synthesise evidence on how communities were engaged in health services research on soil-transmitted helminths in low-and-middle-income countries of the Asia-Pacific Region. We focused on this region because soil-transmitted helminths are endemic, and their burden is significant in this region. This review was conducted according to the Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) checklist. Relevant studies were searched in health-related databases including PubMed, Ovid, and Google Scholar. We selected studies based on the selection criteria set for this review. We collected textual information about the type of health services research, the degree of community engagement, the research phases involved, and the barriers/enablers affecting community engagement in research since they are pertinent to our review question and objective. Ten studies from seven countries in the Asia Pacific region were identified for this review. Albeit with variation in the extent of their involvement, various forms of communities/groups within communities were included such as Aboriginal communities, local communities, school children and their parents, school teachers and headmasters of schools, heads of villages, religious leaders, and so on. Overall, community engagement in health services research focused on of soil-transmitted helminths was limited. Six studies (60%) had collaboration at 'developing methodology', mainly through an explanation of the objectives of the study or study process to be conducted. Seven studies (70%) revealed community participation in soil-transmitted helminths at the "data collection" stage. Only one study (10%) documented that a community leader was involved as a co-author, reflecting an involvement in 'report writing' and further 'dissemination'. Findings suggest that there were various forms of community engagement in various aspects of the health services research context. Overall, there was moderate level of participation, but there was insufficient information on the partnership between various stakeholders, which prevented in-depth analysis of the engagement. Future health services research on soil-transmitted helminth interventions needs to be carefully planned, well designed, grounded in principles of community engagement, and designed methodologically to allow in-depth participation by communities in all stages of the research.

Partnerships between academia and the community led to historic advances in HIV and paved the way for ongoing community engagement in research. Three decades later, we review the state of community engagement in HIV research, discuss best practices as supported by literature, explore innovations, and identify ongoing gaps in knowledge. The community of people living with and at risk for HIV remains actively involved in the performance of HIV research. However, the extent of participation is highly variable despite long standing and established principles and guidelines of good participatory practices (GPP) and community-based participatory research (CBPR). Current literature reveals that known barriers to successful community engagement continue to exist such as power differences, and poor scientific or cultural competency literacy. Several high-quality studies share their experiences overcoming these barriers and demonstrate the potential of CBPR through reporting of qualitative and quantitative outcomes. Greater time and attention should be placed on the development of community engagement in HIV research. A large body of literature, including innovative cross-cutting approaches, exists to guide and inform best practices and mitigate common barriers. However, we recognize that true growth and expansion of CBPR within HIV and in other fields will require a greater breadth of research reporting qualitative and quantitative outcomes.

Community-engaged health research, an approach to research which includes the participation of communities, promotes the translation of research to address and improve social determinants of health. As a way to encourage community-engaged research, the National Institutes of Health required applicants to the Clinical and Translational Science Award (CTSA) to include a community engagement component. Although grant-funding may support an increase in community-engaged research, faculties also respond to the rewards and demands of university promotion and tenure standards. This paper measures faculty perception of how three institutions funded by a CTSA support community-engaged research in the promotion and tenure process. At three institutions funded by a CTSA, tenure track and nontenure track faculty responded to a survey regarding perceptions of how promotion and tenure committees value community-engaged research. Faculty view support for community-engaged research with some reserve. Only 36% agree that community-engaged research is valued in the promotion and tenure process. Encouraging community-engaged scholarship requires changing the culture and values behind promotion and tenure decisions. Institutions will increase community-engaged research and more faculty will adopt its principles, when it is rewarded by promotion and tenure committees.

Community engagement is recommended to ensure the public health impact of NIH-funded science. To understand the prevalence of community-engaged research and faculty interest in and needs around this, from 2012 to 2013, an online survey (n = 3,022) was sent to UCLA Clinical and Translational Science Institute faculty. Among respondents, 45% reported community-engaged project participation in the last year and 64% an interest in learning about community-engaged research. Over 50% indicated career development and pilot grants would increase participation in community-engaged research. A greater percentage of pretenure than tenured faculty (pretenure 54.9%, tenured 42.2%, p = 0008) noted faculty promotion criteria incentivizing community-engaged research would increase participation. In adjusted analyses, African American (OR 4.06, CI 1.68-9.82, p = 0.002) and Latino (OR 1.91, CI 1.10-3.33, p = 0.022) faculty had higher odds of prior participation in community-engaged projects than Whites. Female faculty had greater odds of interest (OR 1.40, CI 1.02-1.93, p = 0.038) in learning about community-engaged research than males. African American (OR 4.31, CI 1.42-13.08, p = 0.010) and Asian/Pacific Islander (OR 2.24, CI 1.52-3.28, p < 0.001) faculty had greater interest in learning about community-engaged research than Whites. To build community-engaged faculty research capacity, CTSAs' may need to focus resources on female and minority faculty development.

Community-academic partnerships (C-APs) have been central to advancements in HIV research over the past 4 decades and were specifically called for in the national Ending the HIV Epidemic (EHE) initiative. Community engagement in research, particularly in HIV research, plays a critical role in prioritizing community needs in all stages of HIV research and intervention implementation. To address the known gaps in building strong C-APs, 2 EHE Implementation Science Consultation Hubs collaboratively facilitated 2 webinars with a panel of expert community leaders. The panel discussions explored (1) what researchers need to know to create equitable C-APs and (2) best practices for navigating power in C-APs. After the webinars, we conducted a quantitative analysis of the 131 EHE research projects partnered with community-based organizations or faith-based organizations between 2019 and 2023 to examine the community engagement in research relationships between EHE academic researchers and implementation partners. Community panelists identified areas for academic researchers to prioritize, including building relationships with community partners, engaging equitably in partnership processes, sharing use of resources, and paying attention to community history. The quantitative analysis found 58% of EHE researchers are in new collaborations, lasting 2 years or less, with their implementation partner, and have not yet established robust partnerships. This study identifies strategies for strengthening community engagement in HIV research and sustaining equitable C-APs for existing EHE supplement recipients that can be integrated into future EHE research and implementation strategies to help end the HIV epidemic in the United States.

Background: Evaluation of community and public engagement in research is important to deepen understanding of how engagement works and to enhance its effectiveness. Theories of change have been recommended for evaluating community engagement, for their ability to make explicit intended outcomes and understandings of how engagement activities contribute to these outcomes. However, there are few documented examples of using theories of change for evaluation of engagement. This article reports experience of using theories of change to develop a framework for evaluating community engagement in research at a clinical research organisation in Malawi. We describe the steps used to develop theories of change, and the way theories of change were used to design data collection plans. Based on our experience, we reflect on the advantages and challenges of the theory of change approach. Methods: The theories of change and evaluation framework were developed through a series of workshops and meetings between engagement practitioners, monitoring and evaluation staff, and researchers. We first identified goals for engagement, then used ‘so that’ chains to clarify pathways and intermediate outcomes between engagement activities and goals. Further meetings were held to refine initial theories of change, identify priority information needs, and define feasible evaluation methods. Results: The theory of change approach had several benefits. In particular, it helped to construct an evaluation framework focused on relevant outcomes and not just activities. The process of reflecting on intended goals and pathways also helped staff to review the design of engagement activities. Challenges included practical considerations around time to consider evaluation plans among practitioners (a challenge for evaluation more generally regardless of method), and more fundamental difficulties related to identifying feasible and agreed outcomes. Conclusions: These experiences from Malawi provide lessons for other research organisations considering use of theories of change to support evaluation of community engagement.

Community engagement is an important method of knowledge translation in spinal cord injury (SCI) research where researchers collaborate with people with lived experience, care partners, and other research users to improve the quality of research. This perspective article aims to promote community engagement in SCI research by describing useful resources for its implementation and providing an example project using the North American Spinal Cord Injury Consortium (NASCIC) process for such partnerships. Researchers from the Jefferson College of Rehabilitation Sciences' (JCRS) Center for Outcomes and Measurement engaged NASCIC to create an advisory committee composed of four people living with SCI to make recommendations for the methods of a large-scale study to develop a clinical outcome assessment. The advisory committee made usable recommendations for enhancing recruitment methods and reducing burden and barriers to participation. The successful partnership between NASCIC and JCRS shows the feasibility and value of SCI community engagement in research.

Background: Evaluation of community and public engagement in research is important to deepen understanding of how engagement works and to enhance its effectiveness. Theories of change have been recommended for evaluating community engagement, for their ability to make explicit intended outcomes and understandings of how engagement activities contribute to these outcomes. However, there are few documented examples of using theories of change for evaluation of engagement. This article reports experience of using theories of change to develop a framework for evaluating community engagement in research at a clinical research organisation in Malawi. We describe the steps used to develop theories of change, and the way theories of change were used to design data collection plans. Based on our experience, we reflect on the advantages and challenges of the theory of change approach. Methods: The theories of change and evaluation framework were developed through a series of workshops and meetings between engagement practitioners, monitoring and evaluation staff, and researchers. We first identified goals for engagement, then used 'so that' chains to clarify pathways and intermediate outcomes between engagement activities and goals. Further meetings were held to refine initial theories of change, identify priority information needs, and define feasible evaluation methods. Results: The theory of change approach had several benefits. In particular, it helped to construct an evaluation framework focused on relevant outcomes and not just activities. The process of reflecting on intended goals and pathways also helped staff to review the design of engagement activities. Challenges included practical considerations around time to consider evaluation plans among practitioners (a challenge for evaluation more generally regardless of method), and more fundamental difficulties related to identifying feasible and agreed outcomes. Conclusions: These experiences from Malawi provide lessons for other research organisations considering use of theories of change to support evaluation of community engagement.

OBJECTIVES/SPECIFIC AIMS: Current translational research moves beyond bench to bedside and includes translating scientific evidence to clinical practice and into the community settings (T1-T5). This progression is dynamic, involving patient-physician, community, and academic organizational structures and translational strategies. However, basic and clinician scientists are often unprepared and/or ill equipped to successfully conduct community-engaged research which may aid in more efficient translation of their research findings. The recognized need for such training was the impetus for our course which was originally designed and implemented through the innovative and sustainable joint academic-community partnerships of Morehouse School of Medicine and Emory University with the support of Georgia Institute of Technology. Since that time the course has evolved with the recently added partner, University of Georgia. METHODS/STUDY POPULATION: Initially developed and implemented in 2008, the course continues through the Georgia Clinical and Translational Science Alliance, Community Engagement and Research Program (GaCTSA/CERP), a Clinical Translational Science Award (CTSA) (UL1TR002378). The course is an introduction to community-engaged research concepts/methods. This includes behavioral science; community engagement principles; clinical translational research partnerships; and strategies in planning, implementing, evaluating, and disseminating community-engaged research to address health disparities. The course is open to the four GaCTSA academic institutions’ faculty, MD, PhD, MS in Clinical Research, and the Graduate Certificate in Translational Science students. RESULTS/ANTICIPATED RESULTS: Students received scholarly and hands-on training in community engaged research through faculty- and community member-led didactic lectures/interactions, team science activities, and a final assignment involving work with a community-based organization. From 2008-2017 over 230 students have matriculated through this course and many are now involved in community-engaged translational research. Most students in the class were MD/PhD students (33%), however 21% were junior faculty, attending physicians (21%), or fellows/residents/ postdocs (15%). Evaluations over the years indicate that most students were unware of Community-Based Participatory or community-engagement strategies for conducting translational research. DISCUSSION/SIGNIFICANCE OF IMPACT: Effective application of community-engaged translational research requires essential skills training to facilitate the translational research paradigm. Translational researchers, at any stage, will benefit from understanding the entire translational research process and the importance of quickly bringing research advances to patients and the community.

Recruiting racially and ethnically underrepresented participants into genetics research studies has been challenging. While many institutions have taken steps to address the inequity in genetics research, genetic counseling training programs have the chance to inspire students to engage with underrepresented communities through utilizing different research methodologies. These methodologies can help students focus on research projects that increase access to genetics services and improve clinical care. Community-engaged research (CER) presents a pedagogical approach to enhance service-learning opportunities for students. Furthermore, it allows students to develop practical research skills for doing research with the community, rather than on the community. CER is a collaborative community-academic partnership that leads to mutual benefit and outcomes such as inclusion and engagement of the community in research, building trust and relationships, and increasing cultural awareness and exposure. In addition, CER can be used to address research and healthcare inequities by providing opportunities for genetics professionals and trainees to work closely with underrepresented populations. We aim to highlight the opportunities CER provides to students, mentors, and faculty within the context of graduate research in genetic counseling training from the experiences of a student and an educator. In addition, we hope to emphasize the necessity for projects like these to address the gaps in participation of underrepresented patient populations in research and identify areas that are mutually beneficial to improve health outcomes, patient care experiences, access, and service delivery. This reflective essay illustrates the completion of a CER project that was developed in collaboration with community members to address gaps in clinical genetics services in Indigenous healthcare.

OBJECTIVES/SPECIFIC AIMS: Wake Forest Baptist Health (WFBH) is an Academic Learning Healthcare System (aLHS) serving 24 counties in North Carolina and Virginia. Like many aLHSs, WFBH experiences strained community relationships attributable to a history of medical and research abuses against marginalized populations. This legacy accompanies longstanding community mistrust in the healthcare system and research. To overcome these challenges, community-engaged research (CEnR) approaches have potential to repair community-academic relationships, improve public health, and empower groups that traditionally have been neglected by or overlooked in research. To develop and revise our understanding of how CEnR is harnessed at WFBH, semi-structured interviews were conducted with investigators and study staff experienced in CEnR approaches. In-depth interview guides were designed iteratively to capture socio-contextual and detailed descriptions of perceptions, experiences, and strategies specific to the use of CEnR. METHODS/STUDY POPULATION: A keyword search performed within WFBH study records identified 51 investigators whom had submitted research proposals related to CEnR within the past ten years. Sixteen were confirmed eligible based on a review of proposal abstracts, of which 14 responded to email invitations agreeing to participate. Four additional participants were referred by initial participants. Eighteen investigators (16 faculty and 2 research associates) provided consent and completed Interviews. RESULTS/ANTICIPATED RESULTS: The participant sample was 50% female with a mean age of 55 years, 11% Black and 89% White, with representation across various academic backgrounds (e.g., anthropology, medicine, psychology, and public health) A majority of participants (89%) hold doctoral degrees (i.e., PhD, DrPH, EdD, MD, and MD-PhD). On average, participants had been employed at WFBH for 13.9 years, and represented various departments including dermatology, epidemiology and prevention, family medicine, neurology, social sciences and health policy, and psychiatry. Nearly all participants (89%) indicated they had never received formal education or training in CEnR, though 100% reported “on-the-job” training in CEnR. Interviews were audio-recorded, transcribed, coded, and analyzed following an inductive thematic approach, from which twenty-two themes emerged across six domains related to CEnR (Table 2), including: Conceptualization and Purpose, Value and Investment, Community-Academic Partnerships, Sustainability, Facilitators, and Challenges. Results also provided key characteristics that define CEnR (Table 3), and yielded 11 emerging needs necessary to enhance CEnR within aLHSs (Table 4). DISCUSSION/SIGNIFICANCE OF IMPACT: The results of this study provide information critical to understanding how CEnR frameworks and approaches can be harnessed not just in Schools of Public Health, but within aLHSs to build and repair community-academic partnerships, inform research and institutional priorities, and address community health concerns. Despite the small sample size, the number of participant interviews was sufficient to achieve saturation while also providing broad and unique perspectives across various fields and CEnR approaches. Overall, participants conceptualized the purpose and goals of CEnR quite similarly, though there was a great deal of variance in how CEnR was defined and operationalized across interviews, indicating a need to more clearly articulate important features that enhance understanding of what CEnR is and what it is not (Table 3). These discrepancies and inconsistencies indicate a potential need for additional formal training in the understanding and use of CEnR approaches, which is supported by the fact that nearly all participants reported receiving no formal training in CEnR. Across all interviews, participants expressed a need for health care providers and researchers to better understand community contexts, social determinants of health, and historical factors influencing community health and participation in research (Table 4). This work and the data presented here are important for informing CEnR approaches and will be useful for guiding the development of a model incorporating the core tenets of CEnR within the mission, vision, and priorities of aLHSs.

BackgroundTo address an urgent need to advance the field of community engaged research, faculty at Vanderbilt University Medical Center and Meharry Medical College organized the national meeting "Advancing the Science of Community Engaged Research (CEnR): Innovative & Effective Methods of Stakeholder Engagement in Translational Research, Washington, DC September 14-15, 2017 (See Additional file 1). These meetings brought together a diverse group of stakeholders to share community engaged research evidence and practical knowledge for implementing new and enhancing existing research programs. The conference series’ goals were: 1) to expand the scientific basis for the community engaged research field by convening researchers, community partners, patient advocacy organizations, and others to share innovative methods and strategies; 2) to engage community representatives and patient advocates in the development of new approaches in community engaged research by meaningfully involving them in the planning, as speakers and presenters, and as conference participants; and 3) to catalyze innovative community engaged research using interactive meeting methods that promote learning, support collective problem solving, and encourage new conceptual frameworks. These conferences have advanced community engagement across the translational research spectrum in biomedical research. For the 2017 meeting, described here, the overarching theme was Innovative and Effective Methods of Stakeholder Engagement in Translational Research.MethodsThe forum was attended by over 210 participants. This conference used novel approaches to fulfill its objectives of participant diversity, meaningful stakeholder engagement, and eliciting varied distinct perspectives to advance the science of community engaged research. Innovative strategies for the conference included: Think Tanks focused on emerging community engaged research topics or topics in need of urgent attention. These dynamic group sessions provided for freely sharing ideas with the purpose of creating change and facilitating new research collaborations. Learning Labs offered unique opportunities to gain practical knowledge regarding innovative methods in community engaged research. Learning Labs also facilitated the wide broadcast of locally successful engagement methods with the goal of speeding the uptake and implementation of community engaged methods. Travel Scholarships were provided for twenty community and patient representatives to participate in the conference. The lack of travel funds was a significant barrier to stakeholder participation in prior community engaged research meetings. The scholarships expanded the role of community and patient representatives in setting research priorities and promoting methods development. Meaningful Engagement meant that community members and patients participated in decision making on all aspects of the conference planning, including the selection of themes, topics, and speakers, and were fully integrated into the conference as speakers, panelists, and moderators.ConclusionsCommunity and stakeholder engagement can directly impact research by enhancing clinical trial design, increasing relevance, and increasing recruitment, accrual and retention (Staley K.: Exploring Impact: Public 53 Involvement in NHS, Public Health and Social Care Research – INVOLVE.; 2009, Johnson et al Clin Transl Sci 8:388-54 390, 2015, Joosten et al Acad Med 90:1646-1650, 2015). The 2017 Advancing the Science of Community Engaged Research meeting, Innovative and Effective Methods of Stakeholder Engagement in Translational Research facilitated meaningful engagement of diverse stakeholder groups including racial and ethnic minorities, community and patient representatives, and junior investigators. Of 210 attendees, 72 completed the evaluation, and, of those, 36% self-affiliated as community members, and 21% as patient/caregiver advocacy, faith-based, or tribal organization members. This conference 1) represented a step toward expanding the scientific basis for the community engaged research (CEnR) field; 2) catalyzed innovative community engaged research; and 3) enhanced the reach and impact of the scientific developments emerging from pioneering work in community engagement.