Dataset Information

On using ethical principles of community-engaged research in translational science.

ABSTRACT: The transfer of new discoveries into both clinical practice and the wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of health care systems and community organizations, and patients. Engaging new stakeholders in research, however, calls for a reconsideration or expansion of the meaning of ethics in translational research. We explored expert opinion on the applicability of ethical principles commonly practiced in community-engaged research (CEnR) to translational research. To do so, we conducted 2 online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed 9 ethical principles commonly used in CEnR in terms of their importance and feasibility for use in translational research. The RAND/UCLA appropriateness method was used to analyze the data and determine agreement and disagreement among participating experts. Both panels agreed that ethical translational research should be "grounded in trust." Although the academic panel endorsed "culturally appropriate" and "forthcoming with community about study risks and benefits," the mixed academic-community panel endorsed "scientifically valid" and "ready to involve community in interpretation and dissemination" as important and feasible principles of ethical translational research. These findings suggest that in addition to protecting human subjects, contemporary translational science models need to account for the interests of, and owe ethical obligations to, members of the investigative team and the community at large.

SUBMITTER: Khodyakov D

PROVIDER: S-EPMC4833614 | biostudies-literature | 2016 May

REPOSITORIES: biostudies-literature

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On using ethical principles of community-engaged research in translational science.

Khodyakov Dmitry D Mikesell Lisa L Schraiber Ron R Booth Marika M Bromley Elizabeth E

Translational research : the journal of laboratory and clinical medicine 20151219

The transfer of new discoveries into both clinical practice and the wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of health care systems and community organizations, and patients. Engaging new stakeholders in research, however, calls for a reconsideration or expansion of the meaning of ethics in translational research. We explored expert opinion on the applicability of ethical principles com ...[more]

PMID: 26773561

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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.

Dataset Information

On using ethical principles of community-engaged research in translational science.

Publications

On using ethical principles of community-engaged research in translational science.

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