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

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.