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Summary

Non-Profit Organizations (NPOs), Community-Based Organizations (CBOs), and Advocacy Organizations Virtual Listening Session #1

Tuesday, December 14, 2021, 6:00pm-7:30pm ET

Overview

The purposes of the listening session were to listen and to learn about perspectives and experiences related to racial and ethnic equity in the biomedical research enterprise among individuals who lead, work for, are members of, or are otherwise connected to Non-Profit Organizations (NPOs), Community-Based Organizations (CBOs) and advocacy organizations.

The UNITE listening session, facilitated by an outside contractor, was attended by more than 60 participants. Dr. Diana Bianchi, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and head of the Prenatal Genomics and Therapy Section for the Medical Genetics Branch at the National Human Genome Research Institute (NHGRI), welcomed attendees and summarized the mission and goals of UNITE.

Summary of Discussion

• Topic 1: Racial and ethnic equity in the biomedical sciences

  Participants identified areas indicative of inequities in the biomedical sciences. The group discussed the importance, yet lack, of racial and ethnic minority group representation across the enterprise, specifically among faculty members, research teams, and NIH grant review panels. This underrepresentation results in key issues, such as research questions and designs that lack cultural and community competence; research teams who are unfamiliar with community nuances that affect trust, engagement, and meaningful inclusion; and grant reviewers who do not have the lived experiences to recognize the importance of specific research topics. Racial and ethnic minority scientists are well-positioned to build community engagement and trust due to their deeper understanding of the health needs and challenges of populations that experience health disparities. Inequities and inaccurate interpretations also result when grant applications and grant review panels are absent of the individuals from the groups that are targeted for clinical research. An overarching point was that greater representation of racial and ethnic minority groups within the biomedical sciences is critical for transformative change and healing.

• Topic 2: Opportunities and challenges to pathways into the biomedical sciences and workforce

  The discussion centered on two primary challenges to increasing professional pathways within the biomedical sciences. The first was the adverse impact of low representation of racial and ethnic minority persons in biomedical sciences careers and in senior scientific and leadership positions. Environments absent of diverse representation limit exposure to opportunities and entry among underrepresented minority (URM) students and trainees, often do not provide effective mentorship to these groups and/or early-stage professionals and tend to offer low compensation during early career stages. Participants advocated for increased NIH funding to academic institutions to support the recruitment and hiring of racial and ethnic minority researchers. They also advocated for greater accountability for high-quality mental healthcare in medically underserved groups. Second, there is a need to increase and strengthen academic-community partnerships. Working closely with community-based organizations and advocacy groups to conduct research has the potential to increase pathways into the biomedical research workforce. Such partnerships will also provide important insights into community perspectives, needs, and challenges, and facilitate inclusion in clinical research.

• Topic 3: Needs and challenges in racial and ethnic health disparities and equity research

  Participants discussed several needs and challenges around advancing health disparities research. Racial and ethnic minority communities experience a range of health disparities, such as the greater prevalence of multiple chronic medical conditions among African American women and challenges to accessing mental healthcare services in communities with low socioeconomic positions. Intersectionality was also raised, acknowledging that lesbian, bisexual, gay, transgender, and queer or questioning (LBGTQ) individuals who are also members of racial or ethnic minority groups face unique health disparities and healthcare access challenges. Attention to research methodology relevant to promoting health equity is also needed, such as collecting and disaggregating data for Asian/Asian American and Hispanic/Latino populations to identify the unique needs and challenges of groups with varying national origins, and greater NIH support for community-based participatory research (CBPR). Greater NIH investments in health disparities research, incentives for research participants, and accountability for funded investigators to share findings with communities are needed.

  The group also discussed challenges related to seeking NIH funding that have implications for health disparities research and health equity promotion. There is high interest in applying for NIH funding, yet the timing and accessibility of Requests for Applications (RFAs) do not allow sufficient time for community groups and organizations to develop strong applications. Moreover, the language in RFAs should be written in plain language to increase the accessibility of the application process to a broader set of researchers. NIH support for linking community-based organizations and encouraging collaborations would enhance existing and future health disparities research efforts. Participants also advocated for NIH to invest in community organizations in ways that directly benefit community residents. Long-term funding mechanisms and strong community engagement were seen as keys to expanding health disparities research.

• Topic 4: Actions and initiatives to address racial and ethnic equity provided or leveraged by your organization

  The discussion of actions and initiatives centered on the ways in which medical and biomedical professionals have engaged communities to conduct health disparities research and promote healthcare equity. Participants highlighted the importance of clinicians immersing themselves within, and spending more direct time in, communities. Four best practices were shared that have demonstrated success in CBPR projects: (1) co-designing programs with members of the impacted communities; (2) using accessible language so that the purpose of the research and the importance of participation is elucidated; (3) involving community leaders and members to help develop the project and to build trust; and (4) recognizing that building relationships and change takes time.

• Topic 5: Proposed solutions for NIH: tactics, actions, initiatives, policy, and engagement

  Proposed solutions for NIH were focused on building trust and improving the quality of research by implementing changes in research funding practices, community engagement, and strategies to improve career pathways. Conducting research, building trust, and creating sustainable health equity solutions in racial and ethnic minority communities will be enhanced via the “co-design” of research with community members. NIH should consider requiring that CBPR researchers spend at least three years within a community of interest to understand the context, facilitate the interpretation of findings, and enable the identification and implementation of actionable solutions. Supporting educational (e.g., science, technology, engineering, math – STEM) programs offered by community-based organizations and advocacy groups and career pathways for URM persons in the biomedical sciences might also assist with trust-building and increase research participation among racial and ethnic minority communities. Participants also suggested that NIH consider prioritizing health disparities research, community engagement, and researcher training in CBPR; and increasing the research project periods to facilitate sustainable efforts and a positive impact on the health of racial and ethnic minority communities.

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 UNITE, 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.