December 3, 2024

A recent report titled "Community Engagement Practices and Policies of Philadelphia Institutional Review Boards" by researchers at the Drexel University Dornsife School of Public Health (DSPH), highlights recommendations that Philadelphia and other Institutional Review Boards (IRBs) can do to enhance their capacity to ensure the research they oversee is ethical and beneficial to the communities they study. The report emerged from a study funded by Drexel University that explored Philadelphia’s IRBs consideration of community-level ethical concerns in research.

This qualitative investigation recruited participants in leadership positions from 15 of the 17 IRBs in Philadelphia, considering IRB practices and policies as the unit of analysis. The study was responsive to West Philadelphia Promise Zone community residents' concerns about being overstudied, not receiving tangible benefits from research, and a desire to explore opportunities for more inclusive research practices. The research questions that guided this study were a collaboration between DSPH researchers and the Promise Zone Research Connection (PZRC), a community-driven nonprofit organization in West Philadelphia that created and operates a Community Research Review Board.

The study team included principal investigator Amy Carroll-Scott, PhD, MPH, associate professor and chair of the DSPH Community Health and Prevention Department, and co-investigators Allison Rusgo, PA-C, MPH, associate clinical professor in the Physician Assistant Department at Drexel’s College of Nursing and Health Professions and a doctoral candidate in the DSPH Community Health and Prevention Department, Afrah Howlader, DSPH BS '21 and former research assistant, and Hyden Terrell, PZRC board member and community leader.

The recommendations and best practices that emerged from the study emphasized the value of systems-level change within the context of regulatory oversight, such as:

1. Increasing the diversity and modes of engagement of community member representation on IRBs
2. Ensuring that studies include community engagement and dissemination plans
3. Requiring community-engaged research training for IRB members and researchers available through most human subjects certification training programs
4. Tracking the geographic concentration of an institution’s research to understand research overlap and burden and improve community engagement
5. Encouraging IRBs to create a local community of practice to share best practices for engaging with the same minoritized communities overburdened and historically disenfranchised by research

“The PZRC is committed to building on these findings, creating pathways to more effective collaboration between their communities and nearby research institutions regarding the ethical conduct of research in low-resourced, research-burdened communities of color in Philadelphia, and hope that their work can serve as a transformative model for communities and institutions facing similar challenges,” said Carroll-Scott.

In April 2025, PZRC will host a West Philly Research Day where research institution IRB leaders, staff, and researchers can interact with the PZRC board, its Community Research Review Board, and community-based organizations looking to build more equitable and valuable research partnerships. More details to come.

To learn more about this report, listen to a recent Public Responsibility in Medicine and Research (PRIM&R) podcast featuring Carroll-Scott, Rusgo, and Caleila Burrell, project coordinator for the PZRC and West Philadelphia resident.

LISTEN TO PODCAST

READ FULL SUPPORT

Written by Amy Carroll-Scott, PhD, MPH, and Allison Rugso, PA-C, MPH