Call To Action: Research With Relevance

Design studies that don’t just include communities- design studies that are built for communities

Clinical research is only as impactful as its ability to reflect the lived realities of the people it aims to serve. Today, the greatest gap in health innovation isn’t discovery—it’s representation.

So the question is no longer should we design for inclusion. The question is: Why haven’t we, already?

Why Study Design Matters:

  • Study design isn’t a one size fits all—it shapes who is seen, believed, and treated. Currently there remains a significant under-representation of African- Americans in cancer clinical research1

We Need Adaptable, Not Rigid, Systems:

  • Today’s clinical trial models still rely on one-size-fits-most designs.
  • Dynamic and decentralized trial models are emerging—but too slowly.
  • Inclusion/exclusion criteria often disqualify real-world patients before they can even be considered. There continues to be a lack of generalizability due to geographic location, eligibility criteria and reduction of risk

Recruitment ≠ Inclusion. Retention ≠ Equity.

  • Recruiting diverse patients isn’t enough. Can we retain them, listen to them, and center them in the analysis?
  • Community trust is built through ongoing engagement—not transactional enrollment.
  • Nurses are often at the fore-front of care, where they are best suited to advocate for patients who are experiencing systemic inequities in cancer care

Inclusion Isn’t an Add-On—It’s the Foundation of Better Science

  • Equity in research isn't optional. It's what makes data real, results valid, and outcomes applicable.
  • We must move beyond checking boxes and start asking harder questions: What works, for whom, under what conditions—and why?
  • Because science that ignores difference, misses impact.
  • There also continues to be a lack of trust, communication within African-American patient populations in clinical research

So What Now?

Fund studies that prioritize real-world representation—not theoretical averages.

Design protocols that adapt mid-trial to retention trends and community feedback.

Center recruitment around the communities historically excluded—and empower them to lead.

Build research teams that reflect the people they serve, with social scientists, clinicians, and trusted local voices.

EQ Trial Network is not just about consulting and advisory. It’s a commitment to rebuild access to clinical research within communities in care deserts and ensure that no patient gets left behind. Progress is for all.

Citations:

  1. Granda-Cameron, C., McLean Florence, Y., Whitfield-Harris, L., Kates, J., & Lenzo, J. (2022). Perceptions of Clinical Trial Participation in African American Cancer Survivors and Caregivers. Oncology nursing forum, 49(2), 113–124. https://doi.org/10.1188/22.ONF.113-124
  2. Sheppard, V. B., Sutton, A., Holmes, E., Edmonds, M., Preston, M. A., Namoos, A. M., Wells, M., & Thomson, M. D. (2021). Recruitment of African Americans into Cancer Clinical Research: Strategies and Outcomes. Journal of urban health : bulletin of the New York Academy of Medicine, 98(Suppl 2), 149–154. https://doi.org/10.1007/s11524-021-00565-8
  3. Luebbert, R., & Perez, A. (2016). Barriers to Clinical Research Participation Among African Americans. Journal of transcultural nursing : official journal of the Transcultural Nursing Society, 27(5), 456–463.https://doi.org/10.1177/1043659615575578