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Summary

Non-Profit Organizations, Community-Based Organizations, and Advocacy Groups Virtual Listening Session #2

Wednesday, January 18, 2022, 6:00pm-7:30pm ET

Overview

The purposes of the listening session were to listen and learn about perspectives and experiences related to racial and ethnic equity in the biomedical research enterprise among stakeholders who represent, work within, or are otherwise connected to non-profit organizations, community-based organizations, and advocacy groups. The listening session, facilitated by an outside contractor, was attended by more than 90 participants. Dr. Debara L. Tucci, the Director of the National Institute on Deafness and Other Communication Disorders (NIDCD) at NIH, welcomed attendees and summarized the mission and goals of UNITE.

Summary of Discussion

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

  The discussion centered around challenges to equitable patient and community engagement, as well as personal and family advocacy in healthcare and research. A primary challenge noted was distrust in healthcare systems and biomedical research. Racial and ethnic minority community members, particularly those who are medically underserved, report negative healthcare experiences such as discrimination. Participants described biases due to cultural incompetence and lack of humility, with specific examples among neurodiverse individuals and persons whose native language is not English. These experiences maintain or increase distrust across racial and ethnic minority groups and those with less privileged socioeconomic status.

  The group advocated for specific changes needed to reduce disparities in healthcare access, engagement, and outcomes. They emphasized the need for understandable and accessible health information and materials describing research opportunities. It is also important that materials are available in multiple languages and written for general (i.e., lay) audiences. The extant distrust for healthcare systems and biomedical research reported across racial and ethnic minority and medically underserved communities may be reduced with intentional efforts to develop and disseminate culturally appropriate information. Doing so will allow patients to make informed decisions for themselves and their families. Increasing workforce diversity via mentorship and training, as well as supporting long-term strategies to build trust for the biomedical community, are important for reducing racial and ethnic inequities.

• Topic 2: Opportunities and challenges to equity in education and career pathways in the biomedical sciences – education, hiring and research

  The discussion centered on the experiences of racial and ethnic minority persons who work in biomedical science and health-related organizations that reflect challenges to equity. Within organizations, racial and ethnic minority persons are often faced with undue burdens associated with being underrepresented in the workforce. Participants described the stress associated with tokenism and isolation. The “minority tax” is common, in which racial and ethnic minority employees are tasked with leading or participating in diversity initiatives and are also expected to teach others about race, ethnicity, racism, and equity. These issues increase their burden and create additional barriers to career progression. Participants highlighted and expressed the value of racial and ethnic sensitivity trainings within their organizations to combat prejudice and build supportive cultures.

• Topic 3: Opportunities, needs, and challenges in racial and ethnic health disparities and equity research

  Participants discussed a range of challenges and needs that adversely impact the health of racial and ethnic minority groups. They described inequities in health care settings such that these populations, in general, receive lower quality of care compared to White patients. Racial and ethnic minority patients are often unclear about their health status following medical encounters and report truncated time with their doctors, as well as minimization of symptoms and complaints. Improving the extent and quality of patient-provider communication was a point raised and underscored among group members. Suggestions for addressing these issues included enhancing workforce diversity, training providers on effective and culturally competent communication, providing patient advocates at medical visits, and sharing decision-making responsibilities with caregivers.

  The group discussed needs and opportunities to address racial and ethnic health disparities. Community-based research has the potential to reduce health disparities and improve the health of racial and ethnic minority groups yet is less likely to be awarded NIH grants compared with basic and clinical science projects. Other points raised and underscored were the importance of engaging community members as research collaborators and partners, and recognizing the key context expertise that such team members provide. Inequities in compensation for “context experts” compared with content experts, as well for enrolled study participants and community members hired to recruit and collect data were also noted. Given the important contributions of community partners and participants to the richness of the science, increased and equitable compensation is needed going forward.

• Topic 4: Practices and policies as barriers to racial and ethnic equity

  The discussion focused on practices – often unstated – that create barriers to racial and ethnic workforce equity. Participants discussed the power differential that exists between scientists and research staff, and described instances of bias, discrimination, and harassment directed at themselves or others. Understanding and addressing the adverse impacts of this unbalanced power dynamic and the negative environments that can result is a potential training domain for investigators. Individuals whose employment is contingent on work visas were described as among the most vulnerable workers and may have an increased likelihood of mistreatment by supervisors. An additional barrier identified was a lack of sufficient, formal and/or informal, mentorship opportunities among racial and ethnic minority persons across settings. Participants asserted that the NIH budget should reflect priorities to reduce inequities and provide strategic support to create diverse teams that include community-based organizations as partners. There is a need for long-term strategies to combat biases and ensure equitable treatment for vulnerable members of the workforce.

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

  Participants proposed solutions focused on the distribution of NIH grant awards, data analysis, and the sharing of research findings with communities. They suggested that NIH consider efforts to address the racial funding success disparity and increase support for investigators who study populations that experience health disparities. Collecting and analyzing data to identify funding disparities and monitor trends over time are important aspects of these efforts.  Participants also encouraged NIH and NIH-supported scientists to disseminate findings within the communities in which the research was conducted. Translating scientific findings into useable formats would empower community organizations and members to apply the information to bring positive change to their 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.