Summary

Tribal Nations and American Indian / Alaska Native Communities Virtual Listening Session

Tuesday, December 7, 2021, 3:00-4:30pm ET

Brief Overview

The purposes of the virtual listening session were to listen and learn about perspectives and experiences related to equity in the biomedical research enterprise among stakeholders who represent, work within, or are otherwise connected to Tribal Nations, American Indian and Alaska Native (AI/AN) communities, and Tribal serving organizations. The listening session, facilitated by an outside contractor, was attended by more than 50 participants. Dr. Mia Rochelle Lowden, Health Science Policy Analyst in the NIH Office of Research Infrastructure Programs, Office of the Director (OD) and immediate past Chairperson of the Special Populations Research Forum (SPRF), welcomed attendees and summarized the mission and goals of the UNITE initiative. Dr. Juliana Blome, Deputy Director of the OD Tribal Health Research Office (THRO) then highlighted the important roles of Tribal and AI/AN scientists, and the organizations that serve these groups, in reducing health disparities.

Summary of Discussion

• Topic 1: Equity for underrepresented groups in the biomedical sciences
  Participants acknowledged the historical transgressions experienced by Tribal nations and AI/AN communities in the United States (US) overall and in biomedical science. Reconciling with this history was seen as important for increasing AI/AN representation in science in multiple roles, including as community partners, participants, and researchers. They asserted that significant and consistent efforts are needed to increase representation in the field, address health and healthcare needs, and assure equity going forward. Participants emphasized that partnerships are critical to reduce inequities – including health disparities and gaps in education and food security – and must be managed separately with each Tribe to address their unique needs. Participants clarified that Tribes are sovereign Nations, and highlighted government-to-government partnerships as an approach to build trust and promote healing from the past, as well as to address the disparities and inequities experienced by AI/AN communities.

• Topic 2: Opportunities and challenges to pathways and workforce equity – education, hiring and research
  Participants discussed the scarcity of AI/AN doctoral level biomedical scientists and outlined challenges in building and strengthening career pathways. Among the challenges was the burden for AI/AN researchers to serve as cultural representatives and educators due to the underrepresentation of AI/AN scientists within their institutions. This burden also exists on NIH review panels, on which AI/AN researchers find themselves having to justify the need for Tribal-focused biomedical research and discussing the significance of the longstanding health disparities. Participants asserted that NIH should hire AI/AN individuals at every level of the NIH workforce and increase representation on review panels so that these important perspectives and experiences are included. Participants discussed the need for more opportunities for AI/AN students to pursue careers in science, technology, engineering, and mathematics (STEM), beginning in grades K-12. They recommended creating programs that elevate AI/AN researchers as role models and provide opportunities for young people to engage meaningfully with these scientists. Participants also noted the challenges of transitioning from reservation high schools, Tribal Colleges and Universities (TCUs), or other small colleges to large, unfamiliar research institutions and noted the need for cultural and academic support for AI/AN students and early-stage scientists. They also suggested targeted grant application training to establish a strong career foundation and improve grant proposal outcomes for early-stage scientists.

• Topic 3: Practices and policies as barriers to equity
  Participants discussed inequities in research funding that exist for TCUs, for Tribal Nations, and among Tribal Epidemiology Centers (TECs). Participants noted challenges in obtaining grant funding for research conducted by TCUs and Tribal Nations. They also perceived that a small number of large TECs receive the majority of research funding, creating funding disparities among these centers. Participants indicated that the resources available for Tribal health and health disparities research are insufficient to support AI/AN health needs and needed research within AI/AN communities. Participants also described data-related limitations as barriers to equity. Key data needed to identify and monitor disparities, such as death certificates and US Census estimates, are not collected systematically in Tribal Nations and may underrepresent the health concerns among AI/AN communities. Participants suggested that collaborations with other federal agencies to collect the appropriate data and ensure recognition of TECs as public health authorities would result in accurate health disparities data and improvements in AI/AN health.

• Topic 4: Opportunities, needs, and challenges in health disparities and health equity research
  Participants discussed that low representation of AI/AN researchers across institutions limits ethical community-engaged research focused on AI/AN health disparities. AI/AN scientists have historical, culturally competent research approaches that can be difficult to translate and implement within the broader scientific enterprise. Moreover, AI/AN scientists may face a conflict between upholding their Tribal values and scientific practices and applying US academic and NIH-accepted approaches that may not work within Tribes and AI/AN communities. Participants shared the perception that Tribal viewpoints are not valued during grant reviews, and that biases exist around the expertise and resources within TCUs and smaller colleges, as compared with highly ranked universities. Greater AI/AN representation on review panels was seen as a method to bring a more culturally respectful perspective to the review process. Participants also highlighted that community-based participatory research (CBPR), which engages members and leaders to design, approve, and participate in the research, is needed within Tribal Nations and AI/AN communities. They believe that community members should be included as partners, and that Tribes should derive direct benefit from the research.

• Topic 5: Equity actions and initiatives provided or leveraged by your entity
  Native American Research Centers for Health (NARCH) awards from the National Institute of General Medical Sciences (NIGMS) in conjunction with Indian Health Services (IHS) were leveraged by participants to support AI/AN research. Through the NARCH award mechanism, a Tribe or Tribal organization can conduct R01-level studies, which provides five years to conduct effective community-engaged research. Participants stated that NARCH provided the core funding needed to maintain staffing consistency, conduct grant application and research training, and provide support for the engagement of recent graduates and investigators. As an outcome, researchers were able to develop deep partnerships with Tribal Nations and generate more positive outcomes and impactful findings for the community. As additional outcomes of NARCH awards, researchers are prepared to successfully apply for research grants and to work with other institutes in the future.

• Topic 6: Proposed solutions for NIH – Tactics, actions, initiatives, policy, and engagement
  Participants proposed solutions that focused largely on improving career opportunities and experiences for AI/AN researchers and improving the body of research that engages Tribal Nations. Suggestions included increased NIH engagement with Tribal serving organizations, the implementation of programs to encourage and support AI/AN students in the biomedical sciences, and technical assistance for preparing grant applications. Additionally, participants suggested that NIH should hold researchers who study AI/AN health accountable for conducting meaningful community-engaged research, which includes describing and executing plans for integrating Tribes and Tribal leadership in projects from concept to dissemination of findings. Finally, to alleviate the burden on AI/AN scientists to educate others, participants suggested that appointing designated cultural liaisons at NIH and NIH-funded campuses would raise awareness and provide education on the diversity of cultures, histories, and values among Tribal Nations.

NIH is grateful for the participation and perspectives provided by the wide variety of stakeholders in these listening sessions. For more information about past listening sessions, and to follow the efforts of the UNITE Initiative, please visit the UNITE events webpage at nih.gov/ending-structural-racism.

The opinions and perspectives presented in this summary reflect those of listening session participants, and do not necessarily reflect the perspectives or practices of the NIH.