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Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research.
Ethn Dis. 2019 Spring; 29(2):309-316.ED

Abstract

Purpose

Stakeholder engagement and community-engaged research (CEnR) are recognized as approaches necessary to promote health equity. Few studies have examined variations in stakeholder perspectives on research ethics despite the potential for meaningful differences. Our study examines the association between stakeholders' characteristics and their perception of the importance of 15 stakeholder-developed CEnR ethical statements.

Design

Quantitative analysis of close-ended Delphi survey.

Participants

We recruited a national, non-random, purposive sample of people who were eligible if they endorsed conducting CEnR in public health or biomedical fields. Participants were recruited from publicly available information, professional email distributions, and snowball sampling.

Main Outcome Measures

We designed our close-ended Delphi survey from the results of 15 CEnR ethical statements, which were developed from a consensus development workshop with academic and community stakeholders.

Results

259 participants completed the Delphi survey. The results demonstrated that stakeholders' characteristics (affiliation, ethnicity, number of CEnR relationships, and duration of CEnR partnerships) were not associated with their perception of the importance of 15 ethical statements.

Conclusions

The strong agreement among stakeholders on these broad, aspirational ethical statements can help guide partnerships toward ethical decisions and actions. Continued research about variability among stakeholders' ethics perspectives is needed to bolster the capacity of CEnR to contribute to health equity.

Links

PMC Free PDF

Authors+Show Affiliations

Hoover SM
UNC Center for Health Equity Research, University of North Carolina School of Medicine. Department of Social Medicine, University of North Carolina School of Medicine.
Tiwari S
UNC Center for Health Equity Research, University of North Carolina School of Medicine. Department of Social Medicine, University of North Carolina School of Medicine.
Kim J
Department of Biostatistics, University of North Carolina Gillings School of Global Public Health.
Green M
UNC Center for Health Equity Research, University of North Carolina School of Medicine.
Richmond A
Community-Campus Partnerships for Health.
Wynn M
Project Momentum, Inc.
Nisbeth KS
UNC Center for Health Equity Research, University of North Carolina School of Medicine.
Rennie S
UNC Center for Health Equity Research, University of North Carolina School of Medicine. Department of Social Medicine, University of North Carolina School of Medicine.
Corbie-Smith G
UNC Center for Health Equity Research, University of North Carolina School of Medicine. Department of Medicine, University of North Carolina School of Medicine.

MeSH

Community NetworksCommunity-Based Participatory ResearchDelphi TechniqueEthics Committees, ResearchHealth PromotionHumansPublic HealthResearch DesignStakeholder Participation

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

31057316

Citation

Hoover, Stephanie M., et al. "Convergence Despite Divergence: Views of Academic and Community Stakeholders About the Ethics of Community-Engaged Research." Ethnicity & Disease, vol. 29, no. 2, 2019, pp. 309-316.
Hoover SM, Tiwari S, Kim J, et al. Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research. Ethn Dis. 2019;29(2):309-316.
Hoover, S. M., Tiwari, S., Kim, J., Green, M., Richmond, A., Wynn, M., Nisbeth, K. S., Rennie, S., & Corbie-Smith, G. (2019). Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research. Ethnicity & Disease, 29(2), 309-316. https://doi.org/10.18865/ed.29.2.309
Hoover SM, et al. Convergence Despite Divergence: Views of Academic and Community Stakeholders About the Ethics of Community-Engaged Research. Ethn Dis. 2019;29(2):309-316. PubMed PMID: 31057316.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research. AU - Hoover,Stephanie M, AU - Tiwari,Shristi, AU - Kim,Jimin, AU - Green,Melissa, AU - Richmond,Al, AU - Wynn,Mysha, AU - Nisbeth,Kyle Simone, AU - Rennie,Stuart, AU - Corbie-Smith,Giselle, Y1 - 2019/04/18/ PY - 2019/5/7/entrez PY - 2019/5/7/pubmed PY - 2020/6/19/medline KW - Community-Engaged Research KW - Health Equity KW - Research Ethics KW - Survey and Questionnaires SP - 309 EP - 316 JF - Ethnicity & disease JO - Ethn Dis VL - 29 IS - 2 N2 - Purpose: Stakeholder engagement and community-engaged research (CEnR) are recognized as approaches necessary to promote health equity. Few studies have examined variations in stakeholder perspectives on research ethics despite the potential for meaningful differences. Our study examines the association between stakeholders' characteristics and their perception of the importance of 15 stakeholder-developed CEnR ethical statements. Design: Quantitative analysis of close-ended Delphi survey. Participants: We recruited a national, non-random, purposive sample of people who were eligible if they endorsed conducting CEnR in public health or biomedical fields. Participants were recruited from publicly available information, professional email distributions, and snowball sampling. Main Outcome Measures: We designed our close-ended Delphi survey from the results of 15 CEnR ethical statements, which were developed from a consensus development workshop with academic and community stakeholders. Results: 259 participants completed the Delphi survey. The results demonstrated that stakeholders' characteristics (affiliation, ethnicity, number of CEnR relationships, and duration of CEnR partnerships) were not associated with their perception of the importance of 15 ethical statements. Conclusions: The strong agreement among stakeholders on these broad, aspirational ethical statements can help guide partnerships toward ethical decisions and actions. Continued research about variability among stakeholders' ethics perspectives is needed to bolster the capacity of CEnR to contribute to health equity. SN - 1945-0826 UR - https://www.unboundmedicine.com/medline/citation/31057316/Convergence_Despite_Divergence:_Views_of_Academic_and_Community_Stakeholders_about_the_Ethics_of_Community_Engaged_Research_ DB - PRIME DP - Unbound Medicine ER -