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Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research.

Giselle Corbie-Smith1,2, Mysha Wynn3, Alan Richmond4

  • 1Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America.

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Summary
This summary is machine-generated.

Researchers developed an ethical framework for engaged scholarship through stakeholder collaboration. This framework guides equitable health research partnerships and ethical review processes.

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Area of Science:

  • Public Health and Health Systems Research Ethics
  • Community-Engaged Research Methodologies
  • Stakeholder Engagement in Health Research

Background:

  • Growing trend of involving communities, patients, and stakeholders in health research.
  • Absence of a stakeholder-driven ethical framework for engaged scholarship.
  • Need for standardized ethical guidelines in collaborative research.

Purpose of the Study:

  • To develop a data-driven, stakeholder-generated ethical framework for engaged scholarship.
  • To establish ethical principles for the review and conduct of collaborative health research.

Main Methods:

  • Utilized an iterative, stakeholder-engaged methodology.
  • Employed consensus development conference and modified Delphi survey techniques.
  • Engaged 240 participants: community members, ethicists, and academic researchers.

Main Results:

  • Developed a framework comprising 4 domains: equitable research vision, relationship dynamics, community-informed risk/benefit assessment, and accountability.
  • Identified 4 cross-cutting considerations and 15 statements reflecting stakeholder priorities.
  • Framework addresses ethical review and conduct in engaged scholarship.

Conclusions:

  • The stakeholder-engaged framework offers a foundation for ethical practices and policy in collaborative research.
  • Highlights the importance of community and stakeholder perspectives in shaping ethical research conduct.
  • Further application and evaluation of the framework in practice are warranted.