A Researcher's Guide to Community Engaged Research

This guide is meant to be a first stop for researchers who are trying to learn about and implement community engagement in their work, and includes how-to-guides and other resources, as well as key concepts.

  • Community-Engaged Research: A Quick-Start Guide for Researchers - UCSF CTSI 
    This Quick-Start Guide is intended for academic researchers at UCSF who are interested in community-based partnerships for research.

  • Community-Engaged Research with Community-Based Clinicians: A Resource Manual for Researchers - UCSF CTSI 
    Topic 1: What is community-engaged research? Topic 2: Why build research partnerships with community clinicians? Topic 3: Why might clinicians be interested in collaborative research? Topic 4: What questions might community clinicians have about a study? Topic 5: In what kinds of settings is practice-based research conducted? Topic 6: What might I need to know about community clinicians/providers and the community setting? Topic 7: What kinds of studies take place in community clinic settings? Topic 8: What options for research partnerships with community-based clinicians should I know about? Topic 9: What are the challenges I should think about as I consider collaborating with a community-based clinical partner? Topic 10: How do I initiate working relationships with clinicians in community settings? Topic 11: What are steps of collaborative research I need to know about? Topic 12: What do I need to know to obtain funding for collaborative research? Topic 13: What administrative mechanisms should I know about when setting up a research partnership with a community clinician? Topic 14: What do I need to know about publishing a practice-based collaborative study?

  • Community Health Engagement Training - Duke Community and Family Medicine 
    This module describes steps to take to develop a community health program.

  • Duke University Campus Institutional Review Board (IRB) 
    A resource guide to understand ethical consideration given at Duke University (i.e., compensating research participants, confidentiality, informed consent, and recruitment)

  • READI Community Outreach and Engagement Checklist for Researchers and Teams 
    The goal of the Research Equity and Diversity Initiative (READI) is to improve the health of our communities and advance health equity by making it easier for community members and researchers to collaborate on health research that is important and relevant to our community. Our approach to health research relies on the guidance and advice of our Community Advisory Council, made up of community faith leaders, patients, healthcare providers, and study participants. From this collaboration, we are working together to foster trustworthiness in research and increase broad and diverse representation in research participation and the research workforce. Duke recognizes the importance of this work. When diverse communities are represented in clinical trials and studies, everyone benefits from new discoveries. When Duke researchers and community members work together, they can achieve amazing things to advance the health and well- being of our communities. This toolkit provides information to researchers and their teams on organizing outreach and engagement activities to promote equitable research.

  • Resource for Integrating Community Voices into a Research Study: Community Advisory Board Tool Kit 
    One common way to integrate community perspectives into a research study is to develop a community advisory board (CAB), which can play a number of roles in a research study. A CAB is typically comprised of community members who share a common identity, history, language, and/or culture by which the community’s interests in research or program development can be conveyed (Israel, Checkoway, Schulz, & Zimmerman, 1994). CAB members are typically representatives from community organizations that serve your target population; or, in some cases they can be members of the lay community such as parents, patients or youth. However, special attention should be paid to lay member groups as these environments may not be as welcoming or supportive of their active participation. In those instances, the project team should consider ways to make this a more supportive environment such as 1:1 coaching with the lay members; setting ground rules that ensure equal participation and other ideas that may be appropriate

  • Tips for Inclusive Community-Engaged Research 
    This is a resource to use to support building trust and gaining buy-in from the ground up for researchers and community organizations.

  • ChatGPT Cheat Sheet for Community Engagement from Socialpinpoint 
    Social Pin Point developed an information check sheet addressing the intersection of community engagement and ChatGPT.

  • The Radical Welcome Engagement Restoration Model and Assessment Tool for Community-Engaged Partnerships 
    The radical welcome assessment guide can be used as a road map to understand the developmental stages, successes and challenges of a team engaged in CBPR. It also helps the group define and perform individual and collective actions needed to meet their objectives. RWERM and RWEAT provide researchers with additional resources in their toolbox to address some of the challenges of CBPR.

  • Community Engagement Toolkit: Building Purpose and Participation 
    The ever-changing landscape of community needs and challenges makes community development – and public engagement to inform it – a constant practice. Interactions between people and their communities expose complex realities, many of which hold meaningful potential for change. This resource helps researchers and communities develop meaningful and sustainable partnerships.

Cultural Competence and Cultural Humility

Plain Language

 

  • The 5Ws of Racial Equity in Research: A Framework for Applying a Racial Equity Lens Throughout the Research Process 
    The 5Ws of Racial Equity in Research is a framework that uses the questions "Who, What, When, Where, and Why" to promote racial equity in research processes and among the research workforce. The framework uses historical and contemporary examples of research inequities to encourage open discussion and proactive planning for equity. It can be used as a starting point for understanding processes, evaluating circumstances, and being intentional in achieving racial equity in research.

  • COVID-19 Health Equity Studies Prompt Policy Recommendations to Prioritize Community Health Worker Models 
    A new policy paper from Duke-Margolis Center for Health Policy, UNC Center for Health Equity Research and Duke Clinical Research Institute delivers policy recommendations to enhance and prioritize Community Health Worker (CHW) models into existing health care transformation reforms to address health inequities in the U.S.

  • Designing and Implementing a Community-Engaged Research e-Library; A Case Study for Adapting Academic Library Information Infrastructure to Respond to Stakeholder Needs 
    The Duke University Clinical and Translational Science Institute Community Engaged Research Initiative (CERI) created an e-Library in 2018. This e-Library was developed in response to academic researchers and community requests for reliable, easily accessible information about community-engaged research approaches and concepts. It was vetted by internal and external partners. The e-Library’s goal is to compile and organize nationally relevant community-engaged research resources to build bi-directional capacity between diverse community collaborators and the academic research community. Key elements of the e-Library’s development included a selection of LibGuides as the platform; iterative community input; adaptation during the COVID-19 pandemic; and modification of this resource as needs grow and change.     Subjects: Community Engagement, Research, Libguide, e-library, stakeholders

  • Participatory Research to Improve Medication Reconciliation for Older Adults in the Community 
    Medication reconciliation, a technique that assists in aligning a care team's understanding of an individual's true medication regimen, is vital to optimize medication use and prevent medication errors. Historically, most medication reconciliation research has focused on institutional settings and transitional care, with comparatively little attention given to medication reconciliation in community settings. To optimize medication reconciliation for community-dwelling older adults, healthcare professionals and older adults must be engaged in co-designing processes that create sustainable approaches.

  • Biological and Clinical Correlates of the Patient Health Questionnaire-9: Exploratory Cross-Sectional Analysis of the Baseline Health Study 
    This publication features highlights on how: (1) even subthreshold depressive symptoms (measured by PHQ-9) may be indicative of several individual- and population-level concerns that demand more attention; and (2) depression should be considered a comorbidity in common disease.

  • Demographics Imbalances Resulting From the Bring Your Own Device Study Design 
    Digital health technologies, such as smartphones and wearable devices, promise to revolutionize disease prevention, detection, and treatment. Recently, there has been a surge of digital health studies where data are collected through a bring-your-own-device (BYOD) approach, in which participants who already own a specific technology may voluntarily sign up for the study and provide their digital health data. BYOD study design accelerates the collection of data from a larger number of participants than cohort design; this is possible because researchers are not limited in the study population size based on the number of devices afforded by their budget or the number of people familiar with the technology. However, the BYOD study design may not support the collection of data from a representative random sample of the target population where digital health technologies are intended to be deployed. This may result in biased study results and biased downstream technology development, as has occurred in other fields. In this viewpoint paper, we describe demographic imbalances discovered in existing BYOD studies, including our own, and we propose the Demographic Improvement Guideline to address these imbalances.

  • Research Translation: A Pathway for Health Inequity 
    In a context of social inequity, research translation naturally furthers health inequity. As Fundamental Cause Theory (FCT) explains—and an associated empirical literature illustrates—those with more resources benefit earlier and more from scientific innovation than those with fewer resources. Therefore, research translation of its own course creates and widens health disparities based on socioeconomic status and race/ethnicity. Yet, the conversation about research translation has yet to center this critical reality, undermining our efforts to address heath inequity. Moving toward sustainable health equity requires that we build the evidence base for, prioritize, and institutionalize translation approaches that center the needs and assets of low‐resource populations (with community engagement helping toward that end). However, even the impact of that approach will be limited if we as a society do not mobilize knowledge to address social inequity and the many ways in which it shapes health. The health research community should engage the FCT paradigm to think critically about resource allocation among different kinds of research and action. Moreover, in our contributions to discussions about the road to health equity, we must be forthcoming about the reality FCT describes and the limitations it indicates for achieving health equity through translation of biomedical, clinical, health services, and health behavior research alone.

  • The Community Research Liaison Model: Facilitating Community-Engaged Research 
    The Community Research Liaison Model (CRLM) is a novel model to facilitate community-engaged research (CEnR) and community–academic research partnerships focused on health priorities identified by the community. This model, informed by the Principles of Community Engagement, builds trust among rural communities and expands capacity for community and investigator-initiated research. This publication describes the CRLM development process and how it is operationalized today. We followed a multi-phase process to design and implement a community engagement model that could be replicated. The resulting CRLM moves community–academic research collaborations from objectives to outputs using a conceptual framework that specifies our guiding principles, objectives, and actions to facilitate the objectives (i.e., capacity, motivations, and partners), and outputs. The CRLM has been fully implemented across Oregon.

  • From Community Engagement, To Community-Engaged Research, To Broadly Engaged Team Science 
    Abstract 
    A foundational principle and practice for translational research is active participation of a range of disciplines, referred to as “team science.” It is increasingly apparent that to be relevant and impactful, these teams must also include stakeholders outside the usual academic research community, such as patients, communities, and not-for- and for-profit organizations. To emphasize the need to link the practices of team science and of community-engaged research, we propose a framework that has community members and stakeholders as integral members of the research team, which we term, “broadly engaged team science.” Such transdisciplinary and multi-stakeholder teams will be best suited to pose translational research questions, conduct the research, and interpret and disseminate the results. We think this will generate important and impactful science, and will support the public’s regard for, and participation in, research.

  • Developing and Piloting a Community Scientest Academy to Engaged Communities and Patients in Research 
    Abstract 
    Introduction 
    Effective translational research requires engagement and collaboration between communities, researchers, and practitioners. We describe a community scientist academy (CSA) developed at the suggestion of our Clinical and Translational Science Awards’ (CTSA) community advisory board to engage and capacitate community members by (1) increasing community members’ and patients’ understanding about the research process and (2) increasing their access to opportunities to influence and participate in research. A joint CTSA/community planning committee developed this 8-hour workshop including sessions on: (1) research definitions and processes; (2) study design; (3) study implementation; and (4) ways to get involved in research. The workshop format includes interactive exercises, content slides and videos, and researcher and community presenters. 

  • A Model for Academic Institution Support for Community-Engaged Research 
    The promise of community-engaged research (CEnR) to improve the health and well-being of populations is increasingly recognized by academic institutions and the programs that support their work. The National Institutes of Health’s Clinical and Translational Science Awards calls for the development of partnerships with collaborators outside of academia (e.g., patients, nonprofit organizations, governmental agencies, community-based clinicians and delivery systems, industry), “where and when appropriate [1].” Recognizing that optimal ways to involve communities in each stage of the translational process are not yet clear, the program also charged the clinical and translational research institutes (“hubs”) that received funding, to “develop a methodological framework for discovering, demonstrating and disseminating successful collaboration models [1].”

  • A FRAMEWORK FOR DESIGNING HIGH IMPACT COMMUNITY ENGAGED RESEARCH AND LEARNING STRATEGIES

    • Most CERL activities involve short-term engagement strategies, hoping that by building awareness and aptitude for social change, longer-term effects will indirectly be generated.

    • To enhance CERLs' transformative capacities, more elaborate perspectives, acknowledging moments of conflict at the micro, meso, and macro levels, are needed.

    • Transformational relationships are not bound by a fixed timeline or outcome, but are open-ended processes, allowing participants to make targeted adjustments as they navigate the pitfalls and challenges that naturally arise within any social change, inspiring us to embrace the journey of transformation.

    • Adopting comprehensive CERL approaches might help us move beyond simplistic, win-win understandings of learning-centered societal advancements.