Dataset Information

Defining and Measuring Community Engagement and Community-Engaged Research: Clinical and Translational Science Institutional Practices.

ABSTRACT: BACKGROUND:The institutions that comprise the Clinical and Translational Science Award (CTSA) consortium and the National Center for Advancing Translational Sciences continue to explore and develop community-engaged research strategies and to study the role of community academic partnerships in advancing the science of community engagement. OBJECTIVES:To explore CTSA institutions in relation to an Institute of Medicine recommendation that community engagement occur in all stages of translational research and be defined and evaluated consistently. METHODS:A sequential multimethods study starting with an online pilot survey followed by survey respondents and site informant interviews. A revised survey was sent to the community engagement and evaluation leads at each CTSA institution, requesting a single institutional response about the definitions, indicators, and metrics of community engagement and community-engaged research. RESULTS:A plurality of CTSA institutions selected the definition of community engagement from the Principles of Community Engagement. Although claiming unique institutional priorities create barriers to developing shared metrics, responses indicate an overall lack of attention to the development and deployment of metrics to assess community engagement in and contributions to research. CONCLUSIONS:Although definitions of community engagement differ among CTSAs, there seem to be more similarities than differences in the indicators and measures tracked and reported on across all definitions, perhaps owing to commonalities among program infrastructures and goals. Metrics will likely need to be specific to translational research stages. The assessment of community engagement within translational science will require increased institutional commitment.

SUBMITTER: Eder MM

PROVIDER: S-EPMC6237095 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Defining and Measuring Community Engagement and Community-Engaged Research: Clinical and Translational Science Institutional Practices.

Eder Milton Mickey MM Evans Eunbyul E Funes Melanie M Hong Hui H Reuter Katja K Ahmed Syed S Calhoun Karen K Corbie-Smith Giselle G Dave Gaurav G DeFino Mia M Harwood Eileen E Kissack Anne A Kleinman Lawrence C LC Wallerstein Nina N

Progress in community health partnerships : research, education, and action 20180101 2

<h4>Background</h4>The institutions that comprise the Clinical and Translational Science Award (CTSA) consortium and the National Center for Advancing Translational Sciences continue to explore and develop community-engaged research strategies and to study the role of community academic partnerships in advancing the science of community engagement.<h4>Objectives</h4>To explore CTSA institutions in relation to an Institute of Medicine recommendation that community engagement occur in all stages o ...[more]

PMID: 30270224

Similar Datasets

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

Project description:Policy Points Community-engaged research (CEnR) engenders meaningful academic-community partnerships to improve research quality and health outcomes. CEnR has increasingly been adopted by health care systems, funders, and communities looking for solutions to intractable problems. It has been difficult to systematically measure CEnR's impact, as most evaluations focus on project-specific outcomes. Similarly, partners have struggled with identifying appropriate measures to assess outcomes of interest. To make a case for CEnR's value, we must demonstrate the impacts of CEnR over time. We compiled recent measures and developed an interactive data visualization to facilitate more consistent measurement of CEnR's theoretical domains.ContextCommunity-engaged research (CEnR) aims to engender meaningful academic-community partnerships to increase research quality and impact, improve individual and community health, and build capacity for uptake of evidence-based practices. Given the urgency to solve society's pressing public health problems and increasing competition for funding, it is important to demonstrate CEnR's value. Most evaluations focus on project-specific outcomes, making it difficult to demonstrate CEnR's broader impact. Moreover, it is challenging for partnerships to identify assessments of interest beyond process measures. We conducted a mapping review to help partnerships find and select measures to evaluate CEnR projects and to characterize areas where further development of measures is needed.MethodsWe searched electronic bibliographic databases using relevant search terms from 2009 to 2018 and scanned CEnR projects to identify unpublished measures. Through review and reduction, we found 69 measures of CEnR's context, process, or outcomes that are potentially generalizable beyond a specific health condition or population. We abstracted data from descriptions of each measure to catalog purpose, aim (context, process, or outcome), and specific domains being measured.FindingsWe identified 28 measures of the conditions under which CEnR is conducted and factors to support effective academic-community collaboration (context); 43 measures evaluating constructs such as group dynamics and trust (process); and 43 measures of impacts such as benefits and challenges of CEnR participation and system and capacity changes (outcomes).ConclusionsWe found substantial variation in how academic-community partnerships conceptualize and define even similar domains. Achieving more consistency in how partnerships evaluate key constructs could reduce measurement confusion apparent in the literature. A hybrid approach whereby partnerships discuss common metrics and develop locally important measures can address CEnR's multiple goals. Our accessible data visualization serves as a convenient resource to support partnerships' evaluation goals and may help to build the evidence base for CEnR through the use of common measures across studies.

Project description:BackgroundCommunity engagement (CE) in research is valuable for instrumental and intrinsic reasons. Despite existing guidance on how to ensure meaningful CE, much of what it takes to achieve this goal differs across settings. Considering the emerging trend towards mandating CE in many research studies, this study aimed at documenting how CE is conceptualized and implemented, and then providing context-specific guidance on how researchers and research regulators in Uganda could think about and manage CE in research.MethodsWe conducted qualitative interviews and focus group discussions involving forty-one respondents who were experienced in HIV/AIDS biomedical research involving CE. Thirty-eight of these were directly or indirectly associated with Uganda's leading research institution in the field of HIV/AIDS. They included Principal Investigators, Community Liaisons Officers, Research Ethics Committee members and Community Advisory Board Members. Three respondents were from Uganda National Council for Science and Technology. Data were collected between August 2019 and August 2020, using audio-taped focus group discussions and key informant interviews, transcribed and analyzed manually to generate themes and subthemes.ResultsThree major themes emerged: goals or value of CE; the means of CE, and, the evaluation of CE. Goals or value of CE generated four subthemes representing the overarching goals of CE: (1) Promote communities' agency; (2) Generate and sustain trust; (3) Protect and promote communities' rights and interests; and, (4) Help studies optimize participation in the form of enrolment and retention of participants. What usually comes under the nomenclatures of methods, strategies, and approaches of CE, such as town-hall meetings, sports events, drama, and the like, should simply be understood as the means of CE, and it is not desirable to hold pre-conceived and fixed ideas about the best means to conduct CE in research since a lot depend on the context. Finally, the study found that despite CE's critical importance, which suggests the need to track and evaluate it, CE is currently intermittently evaluated, and for inadequate motivations.ConclusionsExisting guidance on how to conduct robust CE in research is no substitute for creativity, flexibility, and reflexivity on the part of both researchers and research regulators.

Project description:Objective The role of the community in the research process in Ethiopia has not been documented. This study aims to explore the existing practices and challenges of community engagement in health research in Ethiopia. Design A qualitative study with a narrative approach was conducted. Data were audio-recorded, transcribed, inductively coded and analysed thematically. Setting Participants were recruited from members of institutional review boards, academic and research staff of Addis Ababa and Jimma universities, research institutions and key development partners. Participants Thirty-six participants were involved in the study. They were purposively selected on the basis of their diverse research experiences and disciplinary profiles with clinical, biomedical and public health representation. Data collection Twenty-two key informant interviews were conducted with members of the institutional review board, community representatives in the institutional review board, community engagement officers, and research focal persons of the universities, research intuitions and key development partners. Fourteen participants who were senior PhD students or senior researchers in academic and research institutions were involved in the in-depth interviews. Results Despite differences of justification, all participants believed in the importance of the participating research community not only to own the research outcome but also contribute to the research planning, sharing of evidence, managing the research process and dissemination of findings. However, it was argued that lack of guidance, skills and experience on how to engage the community at different levels of the research process and limitation of resources affect community engagement in research. Conclusion As an important component of the research process, community engagement facilitates the research process and ensures community ownership of the outcome. Nevertheless, lack of experience and limitation of resources affect operationalisation of community engagement in health research. This calls for building capacity and advocacy to consider community engagement as an integral component of the research process.

Project description:The degree to which artificial intelligence healthcare research is informed by data and stakeholders from community settings has not been previously described. As communities are the principal location of healthcare delivery, engaging them could represent an important opportunity to improve scientific quality. This scoping review systematically maps what is known and unknown about community-engaged artificial intelligence research and identifies opportunities to optimize the generalizability of these applications through involvement of community stakeholders and data throughout model development, validation, and implementation. Embase, PubMed, and MEDLINE databases were searched for articles describing artificial intelligence or machine learning healthcare applications with community involvement in model development, validation, or implementation. Model architecture and performance, the nature of community engagement, and barriers or facilitators to community engagement were reported according to PRISMA extension for Scoping Reviews guidelines. Of approximately 10,880 articles describing artificial intelligence healthcare applications, 21 (0.2%) described community involvement. All articles derived data from community settings, most commonly by leveraging existing datasets and sources that included community subjects, and often bolstered by internet-based data acquisition and subject recruitment. Only one article described inclusion of community stakeholders in designing an application-a natural language processing model that detected cases of likely child abuse with 90% accuracy using harmonized electronic health record notes from both hospital and community practice settings. The primary barrier to including community-derived data was small sample sizes, which may have affected 11 of the 21 studies (53%), introducing substantial risk for overfitting that threatens generalizability. Community engagement in artificial intelligence healthcare application development, validation, or implementation is rare. As healthcare delivery occurs primarily in community settings, investigators should consider engaging community stakeholders in user-centered design, usability, and clinical implementation studies to optimize generalizability.

Dataset Information

Defining and Measuring Community Engagement and Community-Engaged Research: Clinical and Translational Science Institutional Practices.

Publications

Defining and Measuring Community Engagement and Community-Engaged Research: Clinical and Translational Science Institutional Practices.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets