Maintaining trust in uncertain times: Funding pauses and the ethical cost to community-engaged research.

In 2017, the Michigan Institute for Clinical and Health Research (MICHR) and community partners in Flint, Michigan collaborated to launch a research funding program and evaluate the dynamics of those research partnerships receiving funding. While validated assessments for community-engaged research (CEnR) partnerships were available, the study team found none sufficiently relevant to conducting CEnR in the context of the work. MICHR faculty and staff along with community partners living and working in Flint used a community-based participatory research (CBPR) approach to develop and administer a locally relevant assessment of CEnR partnerships that were active in Flint in 2019 and 2021. Surveys were administered each year to over a dozen partnerships funded by MICHR to evaluate how community and academic partners assessed the dynamics and impact of their study teams over time. The results suggest that partners believed that their partnerships were engaging and highly impactful. Although many substantive differences between community and academic partners' perceptions over time were identified, the most notable regarded the financial management of the partnerships. This work contributes to the field of translational science by evaluating how the financial management of community-engaged health research partnerships in a locally relevant context of Flint can be associated with these teams' scientific productivity and impact with national implications for CEnR. This work presents evaluation methods which can be used by clinical and translational research centers that strive to implement and measure their use of CBPR approaches.

OBJECTIVES/GOALS: Identify ways surveys capture the needs of researchers and community partners (CPs) to build a supportive community-engaged research (CEnR) infrastructure Identify strategies to match existing CEnR researchers and CPs who are interested in future CEnR projects Address educational needs of CPs and researchers for sustainable partnerships METHODS/STUDY POPULATION: The Penn State Community Health Equity & Engagement Research (CHEER) Initiative team developed and implemented surveys to capture the unique interests of Penn State researchers and community partners (CPs) in an effort to build a supportive community-engaged research (CEnR) infrastructure. CPs and researchers were identified from the Penn State Clinical and Translational Science CEnR Core, prior engagement in research studies, and through tracking systems of individuals interested in research. The researcher and CP surveys ascertained detailed information of existing CEnR projects and interests in future community-academic partnerships. These results guided six workshops including an Introduction to Community-Engaged Research, Community-Facing Grant Writing, and Research Ethics Training for CPs. RESULTS/ANTICIPATED RESULTS: A total of 99 PSU researchers and 119 community partners (CPs) throughout PA communities completed the baseline surveys. From the data collected, the CHEER Initiative cataloged over 100 CEnR projects, researcher interests, resources/support needed to jumpstart future CEnR projects, types of CPs, PA regions represented by CPs and researchers, and training resources needed to prepare CPs to engage in research efforts. Heat maps illuminating researcher/CP engagement were generated from survey results. While CEnR research projects spanned all 67 PA counties, several studies were in concentrated areas, and thus allow for opportunities to target CEnR outreach in less engaged areas. Data analysis from follow-up surveys will continue to serve as a foundation to best support existing and future CEnR projects. DISCUSSION/SIGNIFICANCE: The CHEER Initiative’s purpose is to reduce health disparities and increase wellness throughout underrepresented PA communities by promoting community-engaged research (CEnR). Surveys used to capture both CEnR interests of Penn State researchers and community partners built a successful and sustainable infrastructure for meeting this goal.

IMPACT: This work will contribute to the understanding of challenges and best practices for navigating the research review process for collaborative community-engaged research. OBJECTIVES/GOALS: The aim of this scoping review is to comprehensively identify the challenges that researchers, community partners, and the Institutional Review Board (IRB) face, in order to develop best practices to guide future community-engaged research (CEnR). METHODS/STUDY POPULATION: Community-engaged research (CEnR) encompasses all research practices in which traditional researchers collaborate with community partners to identify health disparities that affect the community. CEnR aims to empower communities and prevent exploitative research practices on vulnerable populations. Though many goals of CEnR align with that of the Institutional Review Board (IRB) to protect human research subjects from unethical harm, researchers and community members conducting CEnR are often met with challenges when getting research approval. The search strategy included all publications pertaining to challenges in IRB approval and process for studies in the spectrum in community-engaged research. Systematic searches in PubMed Central and PsycINFO were conducted. RESULTS/ANTICIPATED RESULTS: The search strategy produced 748 publications from peer-reviewed journals. We included 118 publications that met our initial inclusion/exclusion criteria from the search strategy in our analysis. Preliminary results show that common challenges include lack understanding of the duo role of community members as researchers and participants, informed consent language barriers, and lack of understanding community-based participatory research. Best practices when working with the IRB include fostering an environment for open communication with the IRB early in the research process, understanding timeline constraints from both researcher and community agencies and supporting the role of community members as research staff. DISCUSSION/SIGNIFICANCE OF FINDINGS: Community-engaged research efforts are advantageous in empowering and providing agency for community members to address important health concerns within their communities. To prevent the exploitation of vulnerable and underserved populations, more research should engage in collaborative community-based partnerships.

OBJECTIVES/GOALS: Residents of environmental justice (EJ) communities experience significantly higher rates of negative health outcomes associated with poor air quality. Low-cost air sensors may supplement regulatory monitoring to better measure air pollution at local scales, but widespread application of this technology remains limited due to many challenges. METHODS/STUDY POPULATION: To address these obstacles, we designed a training program to equip community and academic research partners with the skills and knowledge to successfully apply low-cost sensors in community-engaged environmental health research. The R esearch Innovations using Sensor Technology in Environmental Justice Communities (RISE Communities) program was established through an NIEHS R25 award in 2022 and has three specific aims: 1) Foster community-academic partnerships through research education, training, and team development activities, 2) Provide technical training in the application of low-cost sensors for indoor, outdoor, and personal air monitoring in EJ communities, and 3) Establish a community of practice to address air quality in communities nationwide. RESULTS/ANTICIPATED RESULTS: We hosted our first cohort in August 2023, training five community-academic research teams in team collaboration, community-engaged research, and technical skills for collecting and analyzing data from PurpleAir sensors. Each team received 12 sensors to take to their home EJ communities to begin their projects. Community of practice development continues through interactive webinars and development of a web-based repository of training videos and discussion board posts. Evaluation data show high participant learning and satisfaction, with mean confidence scores improving on 6/8 metrics. Evaluation data also suggest several areas for improvement such as more time spent in teams for planning and additional opportunities for interaction within the cohort and with program instructors for problem-solving. DISCUSSION/SIGNIFICANCE: Effective training for team-based community-engaged research requires careful planning for team development and study implementation. Longitudinal training and support for the technical aspects of utilizing air sensors is also critical to team success. The RISE Communities program is actively recruiting for future training cohorts.

IMPACT: The UTMB Institute for Translational Sciences (ITS) seeks to advance the field of community engagement and facilitate competency in community-engaged and community-based participatory research as a means of expanding team science to integrate community involvement and to assist investigators in building relationships that enable them to contribute to community initiatives. OBJECTIVES/GOALS: The UTMB ITS recently implemented a new Community Health Small Grants program to promote and enhance community-campus partnerships. Our goal is to better translate science from discovery to clinical practice and public health through community-engaged research, education, and dissemination. METHODS/STUDY POPULATION: Applications were solicited from community and academic research partners. Community partners may include existing collaborative groups, community health centers, health departments, nonprofits, schools, social services agencies, practice-based research networks, or Community Advisory Boards. Academic partners may include faculty and/or students. The PI may be a community or academic partner. While this Grants Program will transition to the ITS Pilot Project Program, it will utilize a separate review process and scoring rubric focused on immediate and future community benefit, project feasibility, organizational fit, and other factors unique to community-based partnership projects. RESULTS/ANTICIPATED RESULTS: We received an enthusiastic response to our RFA, based upon a long-standing program of a sister CTSA hub. Proposals received include target populations representative of our most vulnerable’‘ children, the elderly, those lacking access to health care, and those for whom language is a barrier. One addresses the Institution’s and the CEC’s need to conduct community needs assessments to enable the implementation of evidence-based programs driven by data and metrics identified and developed by our communities. Each awarded proposal demonstrates a significant and sometimes critical need for the project. Partnerships are anticipated to have significant impacts on the community and its population. DISCUSSION/SIGNIFICANCE OF FINDINGS: We generate, test, and disseminate team science, education and best practices through stakeholder involvement. Our Community Health Small Grants program aims to involve community in our scientific teams and to involve academics in community-derived projects as well as foster relationships and trust.

OBJECTIVES/GOALS: Involving community partners in translational research improves impact. Yet, community-engaged research is challenging, and teams vary in their success. This study builds the evidence of key barriers and facilitators to effective community-engaged team science by drawing on the perspectives of seasoned researchers and community partners. METHODS/STUDY POPULATION: We conducted 3 focus groups with academic researchers (n=9) and 2 focus groups with community research partners (n=8). All participants were adults from the Southern California area, and had experience working on research teams that included academics and community partners. The focus group guide included questions about the participant’s experience with community-engaged research, including the value of these partnerships, examples of success and challenges, and opportunities for improvement. Transcriptions of the focus group recordings were analyzed to identify key themes and insights, and to explore similarities and differences between academic and community participant perspectives. RESULTS/ANTICIPATED RESULTS: Both researchers and community partners saw the potential value of participating in community-engaged research. However, they identified challenges to address, including: 1) Community partners should be invited to participate in early stages of the research process as equal partners to help frame the objectives. 2) Community partner’s knowledge should be valued through the use of their ideas and input, and providing monetary compensation for their time. 3) Academic researchers should aim to build long-term meaningful relationships with the community and build cultural competency (language, culture, and trust). 4) Community partners should be closely involved with the interpretation of results to confirm accuracy and identify valuable insights, and these contributions should be acknowledged. DISCUSSION/SIGNIFICANCE: Community partners being undervalued is a central challenge of community-engaged research teams. Greater adoption of best practices in team science could empower community partners and increase the value of this research. Structural barriers related to research funding and academic promotion should align to support these 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.

As community-engaged and community-driven research grows in the Arctic, research collaborations increasingly encounter ethical dilemmas that extend beyond procedural ethics guidelines, which require nuanced and culturally-sensitive navigation. Early-career researchers and students play a critical role in community research collaborations in the Arctic, but often do not receive structured guidance on ethical decision-making in cross-cultural settings. In this manuscript we draw from our diverse experiences in community-engaged research to examine underpinnings of common ethical dilemmas, including managing power imbalances across research teams and community partnerships; encountering and addressing harassment and discrimination; attending to mental health and safety during research activities; and navigating resource (in)equity. We highlight the need for intentional trust-building, reflexivity exercises, and team-based exploration of principles to address ethical dilemmas in community-engaged research settings. Additionally, we provide examples of dilemmas and questions to guide ethics discussions for Arctic research teams, including students and early-career researchers. Establishing clear team guidelines for ethical decision-making and equipping team members with the skills to navigate ethical challenges can foster more equitable research collaborations with Arctic communities, and lay the foundation for co-generating ethical standards with community partners.

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.

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.

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.

Problem: As community-engaged research (CER) methods evolve, Institutional Review Boards (IRBs) must adapt policies to facilitate CER research. This paper describes a novel collaboration between hospital-based therapy dog volunteer teams (CERs), academic faculty, and an IRB. Subjects: CER volunteers delivered a canine-assisted intervention to hospitalized adults in a clinical trial. Methods: IRB members and faculty developed a human subjects protections training tailored to the volunteer handlers' role as study interventionists including an interactive video- and discussion-based training with a knowledge assessment. Findings: Fourteen volunteer handlers were trained. The expedited IRB review period was similar to national average rates (18 days.) Volunteer handlers have conducted 107 research visits with little patient attrition. Conclusion: Tailored human subjects trainings facilitate research with interventions delivered by people who are not typically involved in research. Bespoke CER human subjects training requires collaboration between researchers and IRBs and flexibility in IRB policy regarding CER.

Although community-engaged research (CER), including community-based participatory research (CBPR), is a growing approach in addressing health disparities, little scientific study on how to enhance its processes or products exists. These fields are built on practice-based case studies, evaluations, and qualitative examinations of principles in action. This gap is as an emerging priority in the clinical and translation sciences. We designed a 5-day workshop for academic-community research teams in suicide prevention and health promotion, broadly defined. Seasoned academic and community partners developed and implemented curriculum at three training institutes from 2007 to 2010. We developed self-report tools to evaluate this training model for CER practice. We crafted and evaluated both mediating processes and outcome measures for academic and community partners to assess team CER development. We analyzed post-training evaluation surveys completed late in 2010. We conducted exploratory factor analysis on survey data from 48 community or academic partners. These team members participated in at least one National Institutes of Health-funded CER training institute to advance suicide prevention, broadly defined. Partnership development measures that capture both academic and community perspectives demonstrate reliability and validity. Multidimensional latent constructs for inclusion in CER development models included partnership agency, personal knowledge and capacities, and benefits of collaborative research partnerships over time. We discuss the utility of findings to future CER training design and study.

The Society for Social Work and Research (SSWR) created its Research Capacity and Development Committee in 2017 to build research capacity across the careers of social work scholars. The committee has initiated multiple conferences and webinar sessions that have increasingly focused on antiracist and antioppressive (ARAO) research, including "Mentorship for Antiracist and Inclusive Research" and "Strategies for Supporting Antiracist Pedagogy & Scholarship: Reimagining Institutional Systems & Structures." This commentary integrates themes from these sessions and other discussions among committee members about strategies to advance ARAO research. Although SSWR board members reviewed and approved this submission, it is not an official statement of SSWR or its board of directors.

"Community Engagement and the Ethics of Global, Translational Research: A Response to Sofaer and Eyal." The American Journal of Bioethics, 10(8), pp. 37–38 This publication was supported by an Institutional Clinical and Translational Science Award, NIH/NCRR Grant #1UL1RR026314-01. Its contents are solely the responsibility of the authors and does not necessarily represent the views of the NIH.