Literature DB >> 31057316

Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research.

Stephanie M Hoover1,2, Shristi Tiwari1,2, Jimin Kim3, Melissa Green1, Al Richmond4, Mysha Wynn5, Kyle Simone Nisbeth1, Stuart Rennie1,2, Giselle Corbie-Smith1,6.   

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.

Entities:  

Keywords:  Community-Engaged Research; Health Equity; Research Ethics; Survey and Questionnaires

Mesh:

Year:  2019        PMID: 31057316      PMCID: PMC6478047          DOI: 10.18865/ed.29.2.309

Source DB:  PubMed          Journal:  Ethn Dis        ISSN: 1049-510X            Impact factor:   1.847


  17 in total

1.  Community-based participatory research: policy recommendations for promoting a partnership approach in health research.

Authors:  B A Israel; A J Schulz; E A Parker; A B Becker
Journal:  Educ Health (Abingdon)       Date:  2001

Review 2.  A systematic review of collaboration and network research in the public affairs literature: implications for public health practice and research.

Authors:  Danielle Varda; Jo Ann Shoup; Sara Miller
Journal:  Am J Public Health       Date:  2011-11-28       Impact factor: 9.308

3.  The development of the Bronx Community Research Review Board: a pilot feasibility project for a model of community consultation.

Authors:  Francisco Martin del Campo; Joann Casado; Paulette Spencer; Hal Strelnick
Journal:  Prog Community Health Partnersh       Date:  2013

4.  Building and maintaining trust in a community-based participatory research partnership.

Authors:  Suzanne Christopher; Vanessa Watts; Alma Knows His Gun McCormick; Sara Young
Journal:  Am J Public Health       Date:  2008-06-12       Impact factor: 9.308

5.  Relationships between community-based processes for research ethics review and institution-based IRBs: a national study.

Authors:  Nancy Shore; Elaine Drew; Ruta Brazauskas; Sarena D Seifer
Journal:  J Empir Res Hum Res Ethics       Date:  2011-06       Impact factor: 1.742

6.  Community engagement in the CTSA program: stakeholder responses from a national Delphi process.

Authors:  Elmer Freeman; Sarena D Seifer; Matthew Stupak; Linda Sprague Martinez
Journal:  Clin Transl Sci       Date:  2014-05-20       Impact factor: 4.689

7.  Human subjects protections in community-engaged research: a research ethics framework.

Authors:  Lainie Friedman Ross; Allan Loup; Robert M Nelson; Jeffrey R Botkin; Rhonda Kost; George R Smith; Sarah Gehlert
Journal:  J Empir Res Hum Res Ethics       Date:  2010-03       Impact factor: 1.742

8.  The Harvard Catalyst Common Reciprocal IRB Reliance Agreement: an innovative approach to multisite IRB review and oversight.

Authors:  Sabune J Winkler; Elizabeth Witte; Barbara E Bierer
Journal:  Clin Transl Sci       Date:  2014-09-08       Impact factor: 4.689

Review 9.  Research ethics education for community-engaged research: a review and research agenda.

Authors:  Emily E Anderson; Stephanie Solomon; Elizabeth Heitman; James M DuBois; Celia B Fisher; Rhonda G Kost; Mary Ellen Lawless; Cornelia Ramsey; Bonnie Jones; Alice Ammerman; Lainie Friedman Ross
Journal:  J Empir Res Hum Res Ethics       Date:  2012-04       Impact factor: 1.742

Review 10.  Ethical community-engaged research: a literature review.

Authors:  Lisa Mikesell; Elizabeth Bromley; Dmitry Khodyakov
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

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  1 in total

Review 1.  Community-Based Participatory Research and Human-Centered Design Principles to Advance Hearing Health Equity.

Authors:  Nicole L Marrone; Carrie L Nieman; Laura Coco
Journal:  Ear Hear       Date:  2020-06-13       Impact factor: 3.562

  1 in total

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