June 8, 2022: Increase Inclusivity to Improve Health for All

In this third installment describing my NCATS vision of bringing more treatments to all people more quickly, I focus on that middle part: all people.

I’ve spoken before about our mission of turning research into health solutions through translational science approaches. These approaches address long-standing crimps in the therapy-development pipeline — from cells, tissues, and organs to individuals, communities, and society — so that new treatments reach people faster. But there’s a problem. Our research and translational science workforce haven’t reflected the many communities, identities, races, ethnicities, backgrounds, abilities, cultures, and beliefs of our country. This lack of diversity leads to lack of trust and hurts the health of all communities.

To improve the health of all people, NCATS must dramatically increase inclusivity across every area we support. Reaching this audacious goal is going to be hard.

Our first steps include active learning, listening, and self-assessment. We’re looking inward at our own processes and culture to better understand the issues we need to address — from unequal opportunities within our own workforce to the forces of structural racism within our society.

In this message, I’m going to focus on some activities emphasizing principles of diversity, equity, inclusion, and accessibility (DEIA) in our work and workforce to foster an equitable and welcoming environment for all. If you’d like more examples, watch my report at the May Advisory Council meeting.

These activities alone will not get us to the goal, but they are steps in the right direction.

Inclusivity Across the Research Pipeline

We know that genetics, lifestyle, and other factors play an important role in health disparities and interact in complex ways. We are working to bring these factors to the forefront of our research planning, design, and implementation so all can benefit from the results.

Scientific opportunities include expanding tissue models, data sets, and other preclinical research tools to represent underserved or vulnerable populations in the drug discovery process. Tissue chips, for instance, could be an important tool for including greater diversity in disease modeling. An early NCATS-funded tissue chip project recapitulated the female reproductive system, enabling modeling of understudied diseases and demonstrating the potential to explore even more diseases that disproportionately affect certain populations. One of our new Clinical Trials on a Chip projects is using tissue chips to test individual patient responses to possible therapies for nonalcoholic fatty liver disease, which disproportionally affects people of color and has no approved treatment.

A key priority from the outset of our National COVID Cohort Collaborative (N3C) effort is to look at COVID-19 outcomes from electronic health record data that is representative of the U.S. population, including the communities hardest hit. By linking clinical data with demographic information, the N3C has helped us learn more about how risks for COVID-19 vary across ages, races, chronic conditions, and treatment regimens. I encourage you to explore the new interactive N3C Public Health Dashboard, where you can view summary-level data by demographic category.

The pandemic also highlights NCATS’ ongoing work to engage underserved communities in clinical research. NCATS-funded Clinical and Translational Science Awards (CTSA) Program community engagement experts teamed up with the NIH Community Engagement Alliance to raise awareness of COVID-19 clinical trial opportunities in the communities hardest hit. To encourage greater participation among populations historically underrepresented in clinical trials, our current COVID-19 trial allows people from anywhere in the country to take part; more than half of the enrollment sites are in counties with Black and Hispanic population sizes above the U.S. average.

Lack of inclusion in clinical trials cuts across all diseases — plus the No. 1 problem in completing NIH-funded clinical trials is recruitment and enrollment. Overcoming these challenges is crucial to reducing disparities and advancing health equity. With this goal in mind, the CTSA Program’s Trial Innovation Network (TIN) has been developing innovative approaches to promote evidence-based strategies and more diversity in clinical trials. For example, the Recruitment Innovation Center (RIC) under the TIN hosts community engagement studios that involve diverse groups of stakeholders in the planning and implementation of clinical research. Engaging stakeholders at every step is one of the RIC’s four recommendations for addressing pitfalls in recruitment and retention. We’re currently evaluating CTSA Program efforts like these to better understand their impact, and we’re exploring past enrollment data from our Rare Diseases Clinical Research Network to better understand barriers specific to diverse participation in clinical research on rare diseases.

Inclusivity in the Research Workforce

Inclusion in the research workforce also matters — not just because it fosters innovation, but also because it creates mutual respect and a culture of belonging.

One focus area for us is creating more on-ramps into the workforce. NCATS has joined the long-standing Science Education Partnership Award Program, a program that gives students, teachers, and communities in rural, underserved, and disadvantaged areas opportunities to learn about careers in basic or clinical research, as well as high-quality STEM materials. This year, we will welcome our inaugural interns in the NCATS Gaining Research Equity and Advancement in Translational Sciences Program, which will support the career development of a diverse group of undergraduate and graduate student participants. We’re also participating in an NIH-wide funding opportunity to recognize excellence in DEIA mentorship, because great mentors are a critical part of recruiting and retaining an inclusive workforce.

Our CTSA Program is equally committed to increasing workforce diversity through our diversity, re-entry, and reintegration research supplements. You can read about some of the awardees. These and other activities will help inform the CTSA Program’s DEIA vision and strategic plan, which are being led by a new CTSA Program Enterprise Committee.

While we are doubling down in key areas to increase inclusivity in the research we do and support, we can — and must — do more. I want to continue working together to address gaps and to make sure positive changes take root. Only then will we achieve NCATS’ full vision of bringing more treatments to all people more quickly.

Your partner in science and health,

Joni L. Rutter, Ph.D. 
Acting Director 
National Center for Advancing Translational Sciences