NIH ACD Meeting Includes COWSD Initiatives and Disability Research Updates

By: France-Elvie Banda
Wednesday, December 18, 2024
On December 12 2024, at the National Institutes of Health (NIH) Advisory Committee to the Director (ACD), the Office of Equity Diversity and Inclusion (EDI) Disability subcommittee, the Chief Officer for Scientific Workforce Development (COSWD) and the Division of Program Coordination, Planning, and Scientific Initiatives (DPCPSI) announced significant updates to advancement in accessibility efforts at NIH, COSWD initiatives and disability research at NIH.

Kevin Williams, Esq., director of the Office of Equity Diversity and Inclusion (EDI), presented updates on the recent accomplishments of the EDI Disability Subcommittee. The subcommittee is comprised of three groups, each tasked with (1) training and education, (2) workplace accessibility, and (3) data, policies, and procedures. Highlights of each group’s accomplishments include Group 1’s collaboration with the Office of Extramural Research (OER) to create a resource page for researchers with disabilities and consultation with OER and facilitated engagement with extramural researchers on accessibility issues with Electronic Research Administration (ERA) and Internet Assisted Review (IAR) and use of inclusive language in Notice of Funding Opportunity (NOFOs) and trainings. To address accessibility, Group 2 developed the “Not accessible, report it” campaign to identify physical spaces that need enhanced accessibility that will be overseen by EDI's Accessibility Specialist. The group also examined the accessibility of conference facilities on the Bethesda main campus, cataloged findings, and developed a guide to hosting accessible events for use across NIH. Group 3 revised the Data Policy to promote transparency and individual privacy protections and reviewed the Reasonable Accommodation Policy to promote inclusive workplace practices. The Disabilities Subcommittee will continue to focus on expanding physical and digital accessibility at NIH, including the development of NIH’s disability community, systems, and workforce data policy. EDI has already launched an initiative that asks prospective employees for their accommodation needs during the hiring process, ensuring that it is ready on their first day of employment.

COSWD Director Marie Bernard, PhD, provided an overview of the ACD Working Group on Diversity’s review of the past four years and its significance in NIH’s advancements in inclusion and diversity. Bernard noted that the primary motivation of COSWD is to promote scientific excellence through diversity and evidence-based data and research. Highlighting research pointing to diversity of thoughts and perspectives as a catalyst for new scientific discoveries. Five approaches are needed to achieve this level inclusive excellence: enhanced flexibility options, the culture of inclusion, demonstratable leadership support, action-orientated accountability, and research interventions/best practices. Bernard also provided updates on Engagement and Access for Research Active Institutions (EARA). Launched in October 2023 with the aim to enhance outreach and connections between Research-Active Institutions (RAIs) and NIH Institutes, Centers, and Offices (ICOs), EARA creates the networks and environments necessary to close institutional gaps caused by disparities in funding and career advancement for faculty from research active institutions. In April 2024, EARA began an intensive pilot project with the goal of working with 52 eligible volunteer RAIs, including rural institutions from Institutional Development Award (IDeA) states, Historically Black Colleges and Universities (HBCUs), Tribal Colleges and Universities (TCUs), and Minority Serving Institutions (MSIs). The intensive pilot was divided into three waves, focused on filling a specific need to appropriately match faculty to an IC that can provide clarifying research guidance, with matches made based on geographic and institutional diversity. To rectify the low rate of faculty and PO matches in Wave 1 (ICs (77%) POs/PDs (58%), during Wave 2, faculty from 15 institutions, including three HBCUs, began receiving training to make their own matches with POs/ICs based on their self-identified needs. A virtual convening will be held in early March 2025 to review the experiences of Wave 2 faculty. Wave 3 is scheduled for February 2025 – July 2025, and the full list will be revealed once all institutions have been confirmed. The conclusion of Wave 3 will result in generalizable principles that can be used for future programming. 

Bernard concluded her updates with an announcement on her retirement from 34 years of federal service (including 16 at NIH) at the end of this year. She championed the collaborative framework taken by COSWD initiatives in the past four years and encouraged the continued work of broadly applicable evidence-based initiatives.

Tara Schwartz, PhD, deputy director of DPCPSI, shared some of the research focused activities taken to promote disability inclusion and advance the disability related health disparities research portfolio at NIH. To continue the work set forth by the ACD Working Group on Disability, DPCPSI established a disability research coordination team and created the DPCPSI Disability Research Webpage to host cross-agency activities. The newly established NIH Disability Research Coordinating Committee (DRCC), composed of 69 members from 24 ICs and 18 offices and programs, will act as an NIH-wide forum to discuss health issues impacting disability communities. For the past year, DRCC has held six community roundtables to allow meaningful engagement and build trust with individuals and organizations in the disability community to inform the development of the NIH Strategic Plan for Disability Health Research. Adam Politis, Co-Chair of DRCC shared the draft strategic plan framework, composed of cross-cutting themes, strategic goals, and potential opportunities for implementation. The cross-cutting themes include public participation and community engagement, accessibility, complexity and Heterogeneity, and dynamics of disability. The strategic goals center on supporting innovative research, meaningful internal and external partnerships to promote disability health research, promotion of engagement and inclusion of people with disabilities in the research ecosystem, and inclusion of researchers with disabilities in the scientific workforce.

Politis also announced the release of the NIH Strategic Plan for Disability RFI, aimed at supporting the development of the strategic plan’s framework. In the first half of 2025, DPCPSI will hold additional community engagement activities, complete an analysis of RFI responses, and draft the strategic plan, scheduled to be released in the summer of 2025.  A full review of the draft cross cutting themes, strategic goals, and potential opportunities can be viewed in the committee’s presentation slides and recorded presentation starting at 4:11:53.