Reimagining Research: Building a Community Institutional Review Board at CHCM

At the Community Health Commission of Missouri (CHCM), we are redefining what ethical research oversight can and should be, especially when it involves communities that have historically been marginalized, exploited, or excluded.

For us, that means creating a Community Institutional Review Board (Community IRB) pilot that redistributes power, values lived experience, and guarantees that research is not just about communities but led by them. This IRB will support collaborative, transparent, and ethical research that reflects the priorities, values, and lived experiences of historically marginalized communities in St. Louis, Kansas City, and Southeast Missouri.

What is an IRB, why does it need reimagining, and why now?

Institutional Review Boards (IRBs) exist to safeguard the rights and welfare of human participants in research, and every study involving people must undergo review. However, traditional IRBs are often based in academic institutions, influenced by strict protocols, driven by deadlines, and composed of members who do not accurately reflect or represent the communities most affected by health disparities.

While IRBs are federally required to ‘include at least one member who is not otherwise affiliated with the institution and who is more part of the immediate family of a person who is affiliated with the institution…’, this can be a “community representative,” but that one seat at the table rarely leads to meaningful representation or decision-making authority (45 CFR 46.107d). In fact, most academic IRBs are overwhelmingly white, and many lack racial, cultural, or geographic diversity entirely (Churchill et al., 2022).

As one of our Wellness & Care Advisory Board members reflected:

This is more than just a gap; it’s a systemic problem.

Distrust in research isn’t just theoretical. It’s based on history, including the Tuskegee Syphilis Study, forced sterilizations, and ongoing exclusion from clinical trials. 

That history continues to influence how people engage with research today. A 2024 Pew study found that 55% of Black Americans believe nonconsensual medical experiments on Black people still occur today. That statistic isn’t just alarming; it highlights the large amount of work still needed. We believe part of that work begins with rethinking who has the power to approve, shape, and oversee research. 

What is an IRB, why does it need reimagining, and why now?

A Community IRB doesn’t just give feedback; it makes decisions, holds authority, and most importantly, centers the voices, experiences, and priorities of the people the research aims to serve. Community members are eager to share their stories and ask meaningful questions about their health and well-being. They need a safe, trusted space where their voices are valued and heard, and where they have the authority to act.

At CHCM, the Community IRB will:

• Review and approve research proposals using an equity-centered, trauma-informed lens
• Represent Black, Indigenous, rural, Hispanic, immigrant, and other historically marginalized communities across Missouri
• Collaborate directly with researchers to shape study design, consent processes, and dissemination strategies
• Foster accountability between research institutions and community members

This isn’t just about representation. Instead, it’s about community ownership of data and research, shared power, and real accountability. It’s about establishing community-led IRBs as a standard in research, not an exception.

Insights from National and Global Leaders

We’ve had the privilege of engaging with leaders in community-engaged research across the country and around the world. Some of these include the following:

• Uzazi CERB (Kansas City) – A fully autonomous board empowered to approve or reject research based on alignment with community values 

• Beloved IRB (New Orleans) – Offers research training to youth and adults and is expanding into external review work 

• Galveston Island Community Research Advisory Committee – Built trust and capacity over time, with members trained in human subjects research and community-based participatory research (CBPR) 

• University of British Columbia – Indigenous Research Ethics Board 
  Offers guidance and review rooted in Indigenous values, emphasizing community ownership and sovereignty in research. 

• Human Sciences Research Council (HSRC) – Center for Community-Based Research 
  Implements community-based ethical review and research governance practices that center cultural competence and co-creation with South African communities. 

• National Health and Medical Research Council (NHMRC) – Indigenous Ethics Guidelines 
  Provides national standards for ethical research with Aboriginal and Torres Strait Islander communities, centered on respect, reciprocity, and cultural integrity. 

Through these conversations, we have seen powerful examples of how communities are being empowered and trusted to shape research that directly impacts them, not just as participants but as decision-makers. Their lived experiences, insights, and stories are not only being shared but are also driving meaningful and lasting change. Here are some of the key lessons we’ve learned from these conversations: 

1. Community empowerment must be prioritized, not just inclusion. 
   True partnership requires more than a seat at the table; it means ensuring communities have the authority and resources to shape outcomes. 

2. The dissemination process matters just as much as data collection. 
   Who receives the data first, how findings are shared, and whether communities benefit from the results are critical questions to consider.  

3. Training and capacity-building are essential. 
   Community members should be equipped not only to serve on the board but also to lead and contribute meaningfully to their broader communities beyond their role in the IRB. 

4. Lived experience should be valued and compensated. 
   Recognizing the expertise that comes from lived experience means compensating board members in equitable and thoughtful ways. 

5. Power dynamics must be named and addressed. 
   It’s crucial to define what power looks like within the board and the institution it’s part of — and to ensure that power is truly shared. 

6. Establish a clear identity and long-term vision for the board. 
   Knowing who the board is, what it stands for, and what it’s working toward builds trust and alignment among members. 

7. There is no centralized space for community-engaged research dialogue. 
   This presents both a challenge and an opportunity—a gap that could be filled through collective organizing, shared learning, and national or regional convenings. 

As one leader shared,

Why this matters, and why your voice is needed 

Research should reflect the realities of the communities it serves. At CHCM, we’re establishing a Community IRB that does exactly that, highlighting community voice, leadership, and lived experience at every stage of the process. 

For community members, this is an opportunity to influence research that affects your health and well-being, ask important questions, hold institutions accountable, and promote change from within. 

For organizational partners, researchers, and funders, this presents an opportunity to support a model that emphasizes trust, equity, and lasting impact – one that transcends superficial engagement toward authentic, community-led oversight. 

Let’s build this together and transform research as we know it. 

References 

• Churchill, S., Largent, E. A., Taggert, E., & Lynch, H. F. (2022). Diversity in IRB Membership: Views of IRB Chairpersons at U.S. Universities and Academic Medical Centers. AJOB empirical bioethics, 13(4), 237–250. https://doi.org/10.1080/23294515.2022.2110962 “IRB Registration  

• Pew Research Center, June 2024, “Most Black Americans Believe U.S. Institutions Were Designed To Hold Black People Back”  

• Vangeepuram, N., Fei, K., Goytia, C., Madden, D., Corbie-Smith, G., & Horowitz, C. R. (2023). Community-Based Participatory Research: Insights, Challenges, and Successes From the Perspectives of Frontline Recruiters and Investigators. Journal of Participatory Research Methods, 4(2). https:/​/​doi.org/​10.35844/​001c.77399 

• 45 CFR 46.107—IRB Membership. Link