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Access Begins At Home: Understanding Barriers to Clinical Research in NYC.

What happens if the system is not built for you?

From Global Vision to Local Reality

  • Clinical trials often remain inaccessible to the very populations most in need of cutting-edge care due to lack of representation among principle investigators and clinical research professionals

The Material Reality of Access

  • Common barriers include:
    • Lack of awareness in real time from the primary care provider on cancer clinical trials who primarity serve underrepresented patient populations
    • Patients are ineligible for paid leave, lack support navigating care logistics
    • Mistrust or lack of awareness of clinical trials

Urban Care Deserts Exist

  • Despite NYC’s healthcare density, boroughs like Bronx, Brooklyn and Queens and Staten Island remain under-resourced for health care workers
  • These "care deserts" are marked by lack of facilities, access to affordable public transit, where physical proximity to hospitals does not translate to access

Rigid Protocols, Missed Participants

  • Traditional inclusion/exclusion criteria rarely reflect the realities of multi-diagnosis patients, non-English speaking patients and caregivers.
  • Trial design must evolve to reflect real-world diversity, complexity, and caregiving realities.

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.

Community-Centered Engagement

  • Partnering with local community leaders is essential towards ensuring outreach to be culturally grounded and emotionally resonant.
  • Educational awareness on clinical research needs to happen within community centres, school, local gathering spots such as coffee shops and bookstores.

Using Generative AI to Extend Reach

  • AI tools can help identify care deserts and predict trial eligibility using EHR and mapping underserved zip codes.
  • However, tech must support—not replace—human-centered outreach and culturally competent navigation.

From Insight to Action

  1. Flexible Trial Designs: Build dynamic, inclusive, and real-world adaptable protocols.
  2. Localized Education: Train clinical trial navigators from within each borough.
  3. Cross-Sector Partnerships: Integrate research outreach with social support systems.
  4. Transparency & Accountability: Track recruitment equity, trial retention, and community trust metrics

Citations

  1. Kelsey, M. D., Patrick-Lake, B., Abdulai, R., Broedl, U. C., Brown, A., Cohn, E., Curtis, L. H., Komelasky, C., Mbagwu, M., Mensah, G. A., Mentz, R. J., Nyaku, A., Omokaro, S. O., Sewards, J., Whitlock, K., Zhang, X., & Bloomfield, G. S. (2022). Inclusion and diversity in clinical trials: Actionable steps to drive lasting change. Contemporary clinical trials, 116, 106740. https://doi.org/10.1016/j.cct.2022.106740
  2. Bylund, C. L., Weiss, E. S., Michaels, M., Patel, S., D'Agostino, T. A., Peterson, E. B., Binz-Scharf, M. C., Blakeney, N., & McKee, M. D. (2017). Primary care physicians' attitudes and beliefs about cancer clinical trials. Clinical trials (London, England), 14(5), 518–525. https://doi.org/10.1177/1740774517717722
  3. New York City Economic Development Corporation. (n.d.). Access to health care in NYC: Borough inequality and the pandemic effect. NYCEDC. https://edc.nyc/research-insights/access-health-care-nyc-borough-inequality-pandemic-effect