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Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research.
PLoS One. 2018; 13(6):e0199451.Plos

Abstract

Increasingly, researchers seek to engage communities, patients, and stakeholders as partners in the process and products of health research. However, there is no existing stakeholder-driven ethical framework for such engaged scholarship. We employed an iterative, stakeholder-engaged method to develop a data-driven framework for the ethical review and conduct of engaged scholarship. We used consensus development conference methods and a modified Delphi survey to engage 240 community members, ethicists, and academic researchers. This multi-staged process produced a framework with 4 domains: vision of equitable and just research, relationship dynamics, community-informed risk/benefits assessment, and accountability. Within the framework, 4 cross-cutting considerations and 15 statements explicate the stakeholders' priorities for the ethical review and conduct of engaged scholarship. Though the findings are promising, the study is limited in that it focuses on stakeholder perspectives, but does not actually evaluate or apply the findings in the field. The stakeholder-engaged framework provides a platform for further articulation of ethical practices and policy for engaged scholarship.

Authors+Show Affiliations

Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America. Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America.Project Momentum, Inc., Rocky Mount, North Carolina, United States of America.Community-Campus Partnerships for Health, Raleigh, North Carolina, United States of America.Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America.Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America.Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America.Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America.Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America.

Pub Type(s)

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

Language

eng

PubMed ID

29928015

Citation

Corbie-Smith, Giselle, et al. "Stakeholder-driven, Consensus Development Methods to Design an Ethical Framework and Guidelines for Engaged Research." PloS One, vol. 13, no. 6, 2018, pp. e0199451.
Corbie-Smith G, Wynn M, Richmond A, et al. Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research. PLoS One. 2018;13(6):e0199451.
Corbie-Smith, G., Wynn, M., Richmond, A., Rennie, S., Green, M., Hoover, S. M., Watson-Hopper, S., & Nisbeth, K. S. (2018). Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research. PloS One, 13(6), e0199451. https://doi.org/10.1371/journal.pone.0199451
Corbie-Smith G, et al. Stakeholder-driven, Consensus Development Methods to Design an Ethical Framework and Guidelines for Engaged Research. PLoS One. 2018;13(6):e0199451. PubMed PMID: 29928015.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research. AU - Corbie-Smith,Giselle, AU - Wynn,Mysha, AU - Richmond,Alan, AU - Rennie,Stuart, AU - Green,Melissa, AU - Hoover,Stephanie M, AU - Watson-Hopper,Sable, AU - Nisbeth,Kyle Simone, Y1 - 2018/06/21/ PY - 2017/11/09/received PY - 2018/06/07/accepted PY - 2018/6/22/entrez PY - 2018/6/22/pubmed PY - 2019/4/16/medline SP - e0199451 EP - e0199451 JF - PloS one JO - PLoS One VL - 13 IS - 6 N2 - Increasingly, researchers seek to engage communities, patients, and stakeholders as partners in the process and products of health research. However, there is no existing stakeholder-driven ethical framework for such engaged scholarship. We employed an iterative, stakeholder-engaged method to develop a data-driven framework for the ethical review and conduct of engaged scholarship. We used consensus development conference methods and a modified Delphi survey to engage 240 community members, ethicists, and academic researchers. This multi-staged process produced a framework with 4 domains: vision of equitable and just research, relationship dynamics, community-informed risk/benefits assessment, and accountability. Within the framework, 4 cross-cutting considerations and 15 statements explicate the stakeholders' priorities for the ethical review and conduct of engaged scholarship. Though the findings are promising, the study is limited in that it focuses on stakeholder perspectives, but does not actually evaluate or apply the findings in the field. The stakeholder-engaged framework provides a platform for further articulation of ethical practices and policy for engaged scholarship. SN - 1932-6203 UR - https://www.unboundmedicine.com/medline/citation/29928015/Stakeholder_driven_consensus_development_methods_to_design_an_ethical_framework_and_guidelines_for_engaged_research_ DB - PRIME DP - Unbound Medicine ER -