Lee M, Brandt N, Reyes CE, Mansour D, Maslow K, Sarkisian C. Practical Incorporation of stakeholder-Informed Ethics into Research Funding Decisions. Progress in Community Health Partnerships: Research, Education, and Action (PCHP). 2024 Jan 2. Epub ahead of print.
The paper explores the ethical imperative in the National Institute on Aging’s mission, emphasizing the inclusion of under-represented community members and stakeholders to rectify historical disparities. Despite the NIA’s budgetary focus on improving diversity in research, achieving racial/ethnic representation remains challenging. The paper explores how two NIA-funded initiatives, RCMAR/CHIME and USDeN, involve stakeholders in reviewing pilot grants, highlighting the crucial role of patient and stakeholder engagement for study relevance and addressing specific population needs. The goals include delineating stakeholder engagement processes, exploring challenges, and sharing lessons learned to contribute insights toward improving research diversity and applicability.
RCMAR/CHIME and USDeN, both NIH/NIA-funded research centers, aim to reduce health disparities and develop evidence on deprescribing for older adults, respectively. RCMAR/CHIME focuses on training under-represented minority faculty and utilizes a Community Liaison Core (CLC) with a Community Action Board (CAB) for stakeholder feedback. USDeN, organized into cores, includes the Stakeholder Engagement Core (SEC) and an associated Stakeholder Council, which, among other activities reviews grant applications for quality of stakeholder engagement. Stakeholders play a vital role in the annual Request for Proposal process, drawing on diverse backgrounds rooted in community-based organizations and substantively influencing research funding decisions. Both centers share similarities in grant review processes but differ in certain aspects, addressing challenges and implementing measures to prevent discrepancies. Moreover, the paper emphasizes the successful incorporation of stakeholder input by RCMAR/CHIME and USDeN, offering practical strategies to advance the grant review process. It introduces creative alternatives to conventional peer review methods, prioritizing improved engagement and trust-building. Underlining the significance of communicating elements related to stakeholder involvement, the paper highlights the goal of strengthening grant applications and meeting ethical imperatives in research funding decisions.
Author Merton Lee reflects on a few key lessons learned from the stakeholder engagement processes explored in the RCMAR/CHIME and the USDeN, and how have these lessons contributed to improving research diversity and applicability in the context of aging and deprescribing:
“There are many key lessons learned from stakeholder engagement processes but to highlight a couple:
- Stakeholders are an essential part of the research process that provide real-world, real-time expertise that guide project development which enrich research relevancy and the impact of the work.
- Early and enduring engagement of stakeholders representing diverse communities can serve as social and cultural guides who hold leadership roles in the decision-making process on matters most important to them and the communities they represent. This provides critical insight to health values & literacy as well as social determinates of health on aspects that investigators may not be sensitive to.
