Institutional Review Boards and Community-Engaged Research: A Call for Reform

A new publication titled “Protection of Participants in Community-Engaged Research by Institutional Review Boards: A Call for Action,” co-authored by Liliane Windsor, PhD, MSW, and Kevin Tan, PhD, MSW, from the University of Illinois Urbana-Champaign School of Social Work, highlights critical shortcomings in the current Institutional Review Board (IRB) processes that hinder community-engaged research (CEnR). The article, published in the American Journal of Public Health, calls for urgent reform to better align IRB protocols with the principles of CEnR.

The authors, joined by Ellen Benoit, PhD, from the North Jersey Community Research Initiative; Patchareeya Kwan, PhD, MPH, CHES, from California State University, Northridge; and Al Richmond, MSW, from Community-Campus Partnerships for Health, argue that the traditional biomedical research models, upon which modern IRBs are based, do not adequately accommodate the collaborative nature of CEnR. Unlike traditional research, which often views human participants as mere data sources, CEnR involves active collaboration and shared decision-making between academic researchers and community partners throughout the research process.

Key Challenges Identified:

1. IRB Timelines and Flexibility: The rigid and lengthy approval processes of IRBs pose significant barriers to CEnR, where adaptability and timely community engagement are crucial.
2. Informed Consent Processes: Current informed consent forms are often too complex and lengthy, failing to reflect the needs and comprehension levels of community participants.
3. Training Requirements: Standard IRB training programs, such as the Collaborative Institutional Training Initiative (CITI), are too demanding and inappropriate for community partners without advanced research training.
4. Compensation Issues: Complicated payment processes for community partners and participants undermine trust and hinder participation.

Proposed Solutions:

The editorial suggests several adaptations to bridge the gap between IRB procedures and CEnR needs:

• Developing alternative, accessible training curricula for community partners.
• Allowing for partial or umbrella protocol approvals to expedite the initiation of research phases.
• Simplifying informed consent processes with community input and creating supplemental materials for better understanding.
• Including community representatives in IRB discussions to ensure culturally relevant and sensitive protocols.

Closing Remarks:

The authors emphasize the importance of updating IRB guidelines to incorporate principles of trust, reciprocity, and equity, which are fundamental to CEnR. By fostering transparency, mutual respect, and shared decision-making, IRBs can better support research that not only advances scientific knowledge but also directly benefits the communities involved.

This call for action aims to stimulate dialogue and drive changes in IRB practices, ensuring that community-engaged research can thrive and contribute to the well-being of both participants and society at large.

About the Authors:

Liliane Windsor, PhD, MSW, and Kevin Tan, PhD, MSW, are faculty members at the School of Social Work, University of Illinois Urbana-Champaign. Ellen Benoit, PhD, is with the North Jersey Community Research Initiative. Patchareeya Kwan, PhD, MPH, CHES, is part of the Department of Health Sciences at California State University, Northridge. Al Richmond, MSW, represents Community-Campus Partnerships for Health.

For more information or to schedule an interview with the authors, please contact Liliane Windsor at lwindsor@illinois.edu.