A Practical Guide for Integrating Community-Engaged Research Across the Psychological Research Cycle

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.

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.

BackgroundThe exponential growth of health information technology has the potential to facilitate community engagement in research. However, little is known about the use of health information technology in community-engaged research, such as which types of health information technology are used, which populations are engaged, and what are the research outcomes.ObjectiveThe objectives of this scoping review were to examine studies that used health information technology for community engagement and to assess (1) the types of populations, (2) community engagement strategies, (3) types of health information technology tools, and (4) outcomes of interest.MethodsWe searched PubMed and PCORI Literature Explorer using terms related to health information technology, health informatics, community engagement, and stakeholder involvement. This search process yielded 967 papers for screening. After inclusion and exclusion criteria were applied, a total of 37 papers were analyzed for key themes and for approaches relevant to health information technology and community engagement research.ResultsThis analysis revealed that the communities engaged were generally underrepresented populations in health-related research, including racial or ethnic minority communities such as Black/African American, American Indian/Alaska Native, Latino ethnicity, and communities from low socioeconomic backgrounds. The studies focused on various age groups, ranging from preschoolers to older adults. The studies were also geographically spread across the United States and the world. Community engagement strategies included collaborative development of health information technology tools and partnerships to promote use (encompassing collaborative development, use of community advisory boards, and focus groups for eliciting information needs) and use of health information technology to engage communities in research (eg, through citizen science). The types of technology varied across studies, with mobile or tablet-based apps being the most common platform. Outcomes measured included eliciting user needs and requirements, assessing health information technology tools and prototypes with participants, measuring knowledge, and advocating for community change.ConclusionsThis study illustrates the current landscape at the intersection of health information technology tools and community-engaged research approaches. It highlights studies in which various community-engaged research approaches were used to design culturally centered health information technology tools, to promote health information technology uptake, or for engagement in health research and advocacy. Our findings can serve as a platform for generating future research upon which to expand the scope of health information technology tools and their use for meaningful stakeholder engagement. Studies that incorporate community context and needs have a greater chance of cocreating culturally centered health information technology tools and better knowledge to promote action and improve health outcomes.

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.

Despite the central role that patient and community engagement plays in translational science and health equity research, there remain significant institutional barriers for researchers and their community partners to engage in this work meaningfully and sustainably. The goal of this paper is to describe the process and outcomes of Engage for Equity PLUS at Stanford School of Medicine, which was aimed at understanding and addressing institutional barriers and facilitators for community-engaged research (CEnR). A Stanford champion team of four faculty and two community partners worked with the University of New Mexico team to conduct two workshops (n = 26), focus groups (n = 2), interviews with leaders (n = 4), and an Institutional Multi-Stakeholder Survey (n = 35). These data were employed for action planning to identify strategies to build institutional support for CEnR. Findings revealed several key institutional barriers to CEnR, such as the need to modify organizational policies and practices to expedite and simplify CEnR administration, silos in collaboration, and the need for capacity building. Facilitators included several offices devoted to and engaging in innovative CEnR efforts. Based on these findings, action planning resulted in three priorities: 1) Addressing IRB barriers, 2) Addressing barriers in post-award policies and procedures, and 3) Increasing training in CEnR within Stanford and for community partners. Addressing institutional barriers is critical for Academic Medical Centers and their partners to meaningfully and sustainably engage in CEnR. The Engage for Equity PLUS process offers a roadmap for Academic Medical Centers with translational science and health equity goals.

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.

BackgroundStudies demonstrate that community engaged research (CER) supports minority recruitment into Alzheimer’s disease studies. In contrast, few studies have explored whether CER can engage diverse ‘SuperAgers,’ adults age 80+ with superior episodic memory. Within the multi‐site SuperAging Research Initiative, which seeks to recruit 40% Black/African American adults, we assessed current CER strategies, study team perceptions of CER feasibility and effectiveness, and barriers to implementing or sustaining CER.MethodThe five SuperAging sites completed a literature‐informed survey on current CER practices and the perceived feasibility and effectiveness of ten potential strategies.ResultsAll sites (100%) have a dedicated CER study team/member, while most (80%) have an ethnoracially representative study team. Responses indicated strong partnerships with community advisors (80%) and organizations (100%), with these techniques rated as highly feasible and effective. Eighty percent of sites provide community education events and find this strategy feasible and effective. In contrast, few sites (40%) publish a newsletter, with variable impressions of its effectiveness and feasibility and lack of expertise creating an implementation barrier. Despite strong perceptions of feasibility and effectiveness, only one site tailors recruitment materials for specific communities due to concerns about expertise and cost. Social media is rarely used as a source of advertising (40%); several sites questioned the feasibility and effectiveness of this technique for SuperAgers, and cited expertise and time as a barrier. Finally, though several sites (60%) see participants during evening hours, few provide early morning (40%) or weekend (20%) appointments, and only one (20%) completes study activities off‐site. Perceived feasibility of these methods was hampered by personnel and time.ConclusionSuperAging sites implement a broad range of CER techniques to increase Black/African American representation in the sample. Responses highlighted the perceived importance of diverse study teams with dedicated time for CER and bidirectional communication with the community. Respondents saw flexible study sites/schedules and tailored recruitment materials as highly effective but difficult to accomplish, making them possible targets for future study planning. While personnel, expertise, and finances represent consistent challenges, sites are universally invested in CER. These data will inform future implementation and evaluation of recruitment science of a diverse SuperAging population.

BackgroundFirst Nations peoples of Australia, New Zealand, the United States of America (USA) and Canada are more likely to be non-drinkers than other people in these countries. However, those who do drink may be at greater risk of alcohol-related harms (at a population level) due to the ongoing impacts from colonisation and associated oppression. Addressing unhealthy drinking (drinking above recommended limits including alcohol use disorders) in primary care settings is one important way to increase accessibility of treatment.MethodsThis systematic review identifies peer-reviewed studies of alcohol treatments delivered in primary care or other non-residential settings for First Nations peoples of Australia, New Zealand, USA and Canada. Literature searches were conducted in seven academic databases from their inception until March, 2020. We assessed evidence of treatment or implementation effectiveness, perceived acceptability or accessibility, and the study quality as assessed by the AXIS tool and by a measure of community participation in the research process.ResultsTwenty-eight studies were included, published between 1968 and 2018. Studies reported on a range of alcohol treatments, from brief intervention to ambulatory withdrawal management, relapse prevention medicines, and cultural therapies. Brief intervention was the most studied approach. Cultural healing practices and bicultural approaches were a key theme amongst several studies. Four studies measured treatment effectiveness, including one randomised controlled trial (naltrexone vs naltrexone plus sertraline vs placebo) and two uncontrolled trials of disulfiram. Of the six implementation studies, three were (hybrid) effectiveness-implementation designs. Most of the remaining studies (n = 21) focused on treatment accessibility or acceptability. Community participation in the research process was poorly reported in most studies.ConclusionsResearch evidence on how best to care for First Nations peoples with unhealthy alcohol use is limited. Trials of naltrexone and disulfiram presented promising results. Cultural and bicultural care were perceived as highly important to clinical staff and clients in several studies. More effectiveness studies on the full scope of alcohol treatments are needed. Greater community participation in research and more transparent reporting of this in study methods will be key to producing quality research that combines scientific rigour with cultural appropriateness.

Community engagement in research improves uptake of health interventions and health outcomes among marginalized populations. Researchers from school-based health centers serving marginalized communities in Miami, Florida fostered community engagement in COVID-19 research and health education through collaboration with school staff and student "champions" from June 2021 to June 2023. Evaluations completed by champions assessed acceptability, feasibility, and recommendations for improvements. Overall satisfaction was high among champions. We elaborate on lessons learned and future directions for this type of research collaboration. (Am J Public Health. 2024;114(8):789-793. https://doi.org/10.2105/AJPH.2024.307711).

Community-engaged research (CEnR) is a potent tool for addressing health inequities and fostering equitable relationships among communities, researchers, and institutions. CEnR involves collaboration throughout the research process, demonstrating improvements in study recruitment and retention, intervention efficacy, program sustainability, capacity building among partners, and enhanced cultural relevance. Despite the increasing demand for CEnR, institutional policies, particularly human participation protection training (HPP), lag behind, creating institutional barriers to community partnerships. Here, we highlight challenges encountered in our ongoing study, Fostering Opportunities in Research through Messaging and Education (FOR ME), focused on promoting shared decision-making around clinical trial participation among Black women diagnosed with breast cancer. Grounded in CEnR methods, FOR ME has a partnership with a community-based organization (CBO) that addresses the needs of Black women with breast cancer. Our CBO partner attempted to obtain HPP training, which was administratively burdensome and time-consuming. As CEnR becomes more prevalent, academic and research institutions, along with researchers, are faced with a call to action to become more responsive to community partner needs. Accordingly, we present a guide to HPP training for community partners, addressing institutional barriers to community partner participation in research. This guide outlines multiple HPP training pathways for community partners, aiming to minimize institutional barriers and enhance their engagement in research with academic partners.

Introduction:We sought to explore how the COVID-19 pandemic impacted community-engaged research (CEnR) from both researcher and community partner perspectives, identify challenges and facilitators affecting their experiences, and describe desired supports for CEnR during future health crises.Methods:We conducted semi-structured, virtual interviews with ten researchers and eight partners who conducted or collaborated on CEnR during the COVID-19 pandemic. Interviews were recorded and transcribed for analysis. We analyzed the transcribed data thematically through an iterative process involving memoing, consensus coding, and reviewing memos and code reports to identify and describe key categories and themes.Results:Challenges identified were related to wellbeing and personal circumstances, such as feeling burnt out, managing increased caregiving responsibilities, or concern about risk of illness; institutional barriers, such as inflexible and burdensome financial, regulatory, and administrative policies; and virtual engagement, such as distractions, limited Internet access, or difficulty forming relationships online. Facilitators fell into two categories. Foundational factors such as strong existing partnerships, funding, and project-specific circumstances were critical to facilitating CEnR activities. Strategy-based facilitators focused on overcoming challenges and included communication, flexibility, risk mitigation, and utilizing techniques to enhance virtual engagement. Desired supports included flexible funding, resources for navigating research during crises, and increased virtual engagement accessibility and guidance.Conclusions:By better understanding challenges and facilitators affecting experiences of researchers and community partners during the COVID-19 pandemic, we can develop strategies and resources to better support CEnR partnerships during future crises.

Disengaged: A systematic review of community engagement in psychedelic-assisted therapy research.

Community-engaged research (CEnR) is fundamental to effective HIV prevention and treatment implementation, although limited in practice. We describe CEnR lessons learned by researchers in HIV-related implementation science to improve future CEnR. Academic-community research partnerships funded by the 2019-2021 National Institutes of Health Ending the HIV Epidemic (EHE) supplement awards. Seven individual awardees representing 8 EHE awards documented partnership characteristics and key CEnR experiences in an online form. Three semi-structured reflection sessions subsequently discussed experiences, identifying opportunities and barriers using qualitative thematic analysis, iterative dialogue, and illustrative case studies. Awardees identified both partnerships newly established for the grant (60%) and preexisting collaborations (40%). Key perceived CEnR benefits included: new and better project ideas; improved project implementation; and priorities to guide future research. Prominent barriers included: administrative burdens resulting in delayed funding access that constrained partner engagement; limited grant timelines and funding for essential preimplementation partnership building; and limited recognition of key CEnR activities in academic success metrics. Adaptive responses to barriers included focusing short award periods on exploratory aims and building on extant community activities. Systems-level redesign at the funder and university levels could improve CEnR equity, including accepting financial risk between grant award and funding receipt to facilitate completion of essential prework such as Institutional Review Board approvals and prevent the exclusion of the more financially constrained community partners or forcing unfunded effort provision and establishing appropriate support and promotion criteria for CEnR-engaged faculty. Thus, enabling CEnR good practices can improve future HIV-related implementation research and EHE goal achievement.

Background: In the United States, many underrepresented minorities experience health disparities in preventative options, access to care, and participation in research. There remains a critical need for robust inclusiveness and diversity to achieve comprehensive participation in research and true health equity. Community health workers (CHWs) and pharmacy technicians may be an overlooked segment in increasing the community reach necessary in alleviating health disparities. Training individuals from and trusted by the community to educate and discuss the importance of research participation may prove an important community engagement method for achieving diversity in clinical trials. Aim: This Community Engagement in Research and Clinical Trial (CERCT) program aims to develop a training curriculum on clinical trials education and inclusivity in research for CHWs and pharmacy technicians. Methods: The CERCT program utilized qualitative methodology in expert in-depth interview sessions with clinical trials and education experts. An appropriate curriculum, content, and mode of training delivery for the program were identified. Interviews also critically reviewed the scientific information most crucial to disseminate to CHWs and Pharmacist technicians, defined the criteria for selecting the most appropriate scientific information for this level of community health partners, and characterized editorial and media management of the training modules. Results: Eleven CERCT modules were developed comprising the importance and benefits of taking part in research and biomedical trials and how to communicate it to others. Modules included 1) history of clinical trials, including past overreach and the need for biomedical research with humans; 2) human participant research studies education, including qualitative and quantitative components; 3) the difference between behavioral, biomedical, and clinical trials; 4) CHW roles in education of research participation, 5) effective communication strategies, 6) research ethics, 7) human subject protection training, 8) the role of the institutional review board, 9) eligibility to consent, 10) vulnerable populations, and 11) Good Clinical Practice training. Conclusion: Community health workers and pharmacy technicians are not a consistent avenue for disseminating clinical trial education and research inclusivity benefits. The development of a curriculum aimed at CHWs and pharmacy technicians seeks to empower more community members with the education to inform their communities and increase representation in science. By creatively engaging and educating active community partners about clinical trials, health disparities in chronic diseases such as cancer, may be alleviated. Citation Format: Jennifer M. Crook, Opeyemi Bolajoko, Folakemi Odedina. Community Engagement in Research and Clinical Trial (CERCT) program: The development of an inclusive clinical trials training program for community health workers (CHWs) and pharmacy technicians [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 1975.

Community engagement research is widely discussed but rarely implemented. This article describes the implementation of a community engagement research project on Dual Diagnosis Anonymous, a rapidly spreading peer support program in Oregon for people with co-occurring mental illness and substance use disorders. After three years of discussions, overcoming barriers, and involving several institutions, this grassroots research project has been implemented and is expanding. Active participants in Dual Diagnosis Anonymous inspired and instructed policy makers, professionals, and students. Community engagement research requires frontline participants, community members, and professional collaborators to overcome multiple barriers with persistence and steadfastness. Building trust, collaboration, and structures for community engagement research takes time and a community effort.