Abstract IA02: The Compelling Imperative to Diversify Participation in Clinical Trials and Research
Authors: Barrett Nadine J. 
Published: December 2020

Abstract
COVID 19 has brought race disparities to the forefront as part of a national dialogue and upset. Those of us that are people of color or do research in this space are not surprised. The reality is that despite the numerous reports and efforts that have so keenly highlighted race disparities and recommendations to address them, we have yet to truly move the needle to improve the health of black and brown people. Interestingly, COVID 19 has caused a national pivot among funding agencies to add research around COVID-19 to their current funding portfolios as enhancement awards or RFAs specific to the pandemic, quickly emerged requiring a rapid response. The value and need for this pivot given this monumental time in global health history is necessary. Yet to what extent are we thinking carefully and deliberately about the importance of diversity in our clinical research and trials to ensure our findings positively impact the populations who are hardest hit and carry the greatest burden of the disease, namely African Americans and other people of color. This a fundamental question and poses an opportunity for us to do something different than what has been our historical pattern. It is well documented that a lack of diverse participation in clinical research and trials is a national problem, where in most studies disproportionally engage white men and women more than any other race and ethnic group. For example, in a recent publication the authors found that 96% of prostate cancer research study participants are white men, in a disease in which black men have the highest incidence and mortality than any other race and ethnic group. National studies engage thousands of patients in clinical research, trials, registries and biobanks but on average have less than 20% of participants from underrepresented race and ethnic groups. This is a far cry from national representation of race and ethnic groups of color and has clear implications that in essence perpetuates the disparities we seek to reduce or eliminate. Lack of diversity in research participation limits our ability to accelerate research and improve population health more broadly. For example, it limits generalizability of findings from the development of effective therapeutics to dissemination and implementation of evidence-based methods to increase screening, treatment, and quality of care are critical, all critical points care points highlighted by COVID-19. It excludes or limits access to cutting edge and potentially life-saving therapies that may have the potential to ease the burden of disease and death for people of color. Essentially, access to clinical research and trials is a social justice and an equity issue and without deliberate and intentional diversity strategies being initiated as we develop and design studies, we are adding to the ongoing sickness and death or preventable diseases among people who are black and brown, this particularly true in the case of COVID 19, cancer and other chronic diseases. While diversity in clinical trials to improve population health and advance racial equity is critical, COVID 19 has presented added challenges and opportunities to address the lack of diversity in oncology clinical research, trials, and biobanking. The very nature of a pandemic requires rapid response, action with a heightened sense of urgency, and some would argue, fear of the unknown. Add these key factors to the well-known points that influence lack of diversity in clinical trials including race and ethnic minorities not being asked or informed about clinical trials, assumptions made by research teams that suggest implicit biases, lack of an overarching diversity strategy embedded in recruitment strategies, lack of accountability -despite the requirement to complete the minority enrollment table, and a paucity of authentic community and stakeholder partnerships that have the ability to build trust and bolster diversity in clinical research before, during and post the pandemic and across an array of diseases, the outcomes could seem dismal. However, addressing these key elements can yield invaluable outcomes, namely improved health and quality of life, preventing avoidable deaths, and equity. This presentation provides key recommendations to advance equity and move the needle in increasing diversity in oncology clinical research and trials, a national imperative.
Citation Format: Nadine J. Barrett. The Compelling Imperative to Diversify Participation in Clinical Trials and Research [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr IA02.