Goal 2: Empower Everyone to Contribute to and Benefit From Translational Science

For disease burden to be reduced, all people must have the opportunity to contribute to and benefit from translational science. NCATS’ commitment to including different perspectives spans across every area we support. It involves designing research with participant and community input. We want to engage with communities to understand their needs. It is imperative we foster inclusion of research participants who adequately reflect the community with the disease or condition being studied. Programs like the CTSA TIN and the RDCRN support research networks that involve patients and patient advocates in research activities. The TIN also works across the CTSA Program to innovate in trial design to ensure broader access to participate in research.

NCATS is a values-based, people-centric organization committed to creating a workplace where everyone can contribute to solving major health challenges. We foster a bold, creative, and innovative environment where our staff can grow, thrive, and contribute to our mission. We work to ensure that the translational science workforce at NCATS and beyond is trained, mentored, and developed across the career spectrum to reflect these values.

Objective 2-1: Broaden inclusion of participants in translational science research.

Having research participants who do not adequately reflect the population with the disease or condition under study can create barriers to successful translation. Challenges in the recruitment of participants in research can lead to new treatments that don’t work for the people who need them most. Research that reflects the real world is critical to achieving our vision. Through new and existing programs, we will explore ways to increase health literacy among potential participants and convey the importance of taking part in research. Through the CTSA Program, and specifically the TIN, we will continue to identify opportunities to build relationships at the local level and increase awareness of research opportunities within communities and through clinical care. Novel clinical trial designs, such as decentralized clinical trials, will be used to increase access to research.

Much work remains to be done to bring the individual participant perspective to the table. More involvement in preclinical research and in clinical research and clinical trials is essential to ensuring impactful findings and rigorous, reproducible research that translates to different health care settings so that needed treatments can reach people faster.

Objective 2-2: Expand engagement of relevant communities as partners in translational science to develop shared understandings of needs that inform research approaches that benefit these communities.

Local middle school students perform a chromatography experiment during Frontiers in Science & Medicine while an NCATS scientist looks on. (Daniel Soñé Photography)

Lack of community engagement also negatively impacts the translation of research observations into health solutions. We can change that by engaging communities on how translational research may benefit them and how they can inform translational science to ensure research outcomes are more meaningful. To nurture trust and trustworthiness, we must engage communities with respect and humility. The CTSA TIN engages patients and communities to inform clinical research design and participation so that the results can benefit communities. Each CTSA Program institution has established a community advisory board (CAB) to understand what is needed locally to improve health in their communities and neighborhoods. For example, many CTSAs and their CABs have teamed with local faith-based and social services leaders in their communities. These collaborations increase trust and participation in clinical trials because the research community becomes a consistent and dependable resource, demonstrating a sustained commitment. Another example is inviting patient communities to participate in workshops, funding announcements, or prize competitions and other programs and activities NCATS undertakes.

In rare diseases research, unique approaches to engaging communities are needed, particularly given the size of patient populations and the challenges in diagnosis. In the NCATS laboratories, we plan to build on successful efforts that have engaged rare disease patients, families, and care providers to inform the development of treatments starting at the preclinical stage. Also, the RDCRN actively includes patients and PAGs as part of each research team, where they directly represent the perspectives and interests of patients with rare diseases. The PAGs act as a coalition to advance rare diseases research and improve patient outcomes by sharing rare diseases information with the research community and educating them. We will explore ways external communities can use our existing databases, tools, and resources to build capacity and advance their priorities.

Objective 2-3: Accounting for health disparities in designing and implementing translational science.

Many factors contribute to health disparities including socioeconomic status and geographic location. We consider health disparities in the development of solutions for targeted and effective interventions to improve overall population health.

NCATS will support the development of strategies that address health disparities across the translational spectrum to ultimately benefit populations underserved or underrepresented in biomedical research or at higher risk for specific diseases or conditions. We must also consider the disparities experienced by individuals with rare diseases. Data sets, cell lines, and disease registries that represent the population, either of the United States or those affected by a given disease, are critical for research to be broadly applicable. They also minimize bias of results and enable rigorous research designs. NCATS’ clinical research networks, such as the CTSAs and RDCRNs, will be important for developing and applying strategies to address health disparities through community-informed research, improve recruitment approaches, and increase access to clinical trials. For example, one important approach will be to use digital health technologies to support decentralized clinical trials, particularly to reach rural populations. CTSA-supported institutions have the capacity to test and apply solutions locally, regionally, and nationally, all of which were necessary to meet the changing needs at each of those population levels. The RDCRN Program has the expertise to address issues of study enrollment and access to care for its rare disease patient populations. Its approach may be adaptable to other programs and research activities in rare diseases.

Objective 2-4: Cultivate a multifaceted and highly skilled translational science workforce.

The representative translational science workforce fosters a culture of belonging and feeds innovation and progress. We are committed to developing and maintaining a highly skilled translational science workforce, both within NCATS and more broadly through the training and career development programs we support. Establishing on-ramps into the workforce and encouraging team science that includes all allied health professionals creates more opportunities for individuals to contribute to successful translational science. Training and educating a strong translational science workforce also involves conducting strategic outreach and recruitment, implementing retention initiatives, and enhancing awareness of overall workforce opportunities in translational science.