Advancing Health Equity in Neurologic Disorders and Stroke: Stakeholder Insights Into Health Disparities, Research Gaps, and Potential Interventions.

OBJECTIVES: The purpose of this study was to analyze the National Institute of Neurological Disorders and Stroke (NINDS) Request for Information (RFI) input from the public-including health care providers, researchers, patients, patient advocates, caregivers, advocacy organizations, professional societies, and private and academic stakeholders with an interest in health disparities (HDs) in neurologic disease. RFI questions were structured to solicit input on what stakeholders believe are neurologic disease HD research priorities, drivers of health inequity, and potential interventions. Furthermore, these stakeholder insights were examined within the context of contemporary scientific literature and research frameworks on health equity and health disparities. BACKGROUND: The NINDS published a RFI from March 31 to July 15, 2020. The RFI analysis presented here is part of a larger strategic planning process aimed to guide future NINDS efforts in neurologic disorder health equity (HE) research and training. The public commented on facilitators of HDs, populations that experience HDs (HDPs), potential interventions, and research opportunities related to HDs in neurologic disease and/or care in the United States across the lifespan. Responses were analyzed using qualitative methodology. Frequently suggested interventions were thematically clustered using the interpretive phenomenological analysis methodology and are presented in this article to provide a stakeholder-identified roadmap for advancing HE. RESULTS: Respondents identified socioecological factors as driving HDs in 89% of determinants reported. Stakeholder-reported HD determinants and subsequent interventions could be classified into the following conceptual categories: HDP neurospecialty care access, innovative HDP engagement and research inclusion strategies, and development of a well-trained clinician-scientist HD workforce. Clustering of the feedback from patient and patient-adjacent respondents (i.e., caretakers and patient advocates) highlighted the prevalence of patient-provider interpersonal factors and limited resources driving access-to-care barriers among their sentiments. DISCUSSION: Respondent sentiments suggest prioritization of social determinants of health (SDOH) research, shifting away from the common target of biological and behavioral themes addressed in the existing body of HE research provided by the stakeholder. Overall, respondents suggest focusing research prioritization on access to care, engagement across the HE research and care landscape, and HE workforce development.

Analysis of NINDS Health Disparities and Health Equity Research Portfolio, 2016-2020: Results and a Process for Transparency, Accuracy, and Reliability.

BACKGROUND AND OBJECTIVES: As detailed throughout this special issue, the National Institute of Neurological Disorders and Stroke (NINDS) recently undertook a strategic planning effort to guide the Institute's efforts and priorities in health disparities and health equity (HD/HE) research. One input into this effort was to conduct a 5-year longitudinal, in-depth analysis of NINDS-supported HD/HE research newly funded between the years 2016 and 2020. The goals of this analysis were to describe NINDS's portfolio according to consistent, contemporary definitions and HD/HE disciplinary theory. This required the development of a novel, systematic, and validated analysis protocol. The portfolio analysis was designed to inform the recommendations of an expert working group convened by the NINDS and internal efforts to support high-priority research, training, and infrastructure efforts. METHODS: NINDS staff developed and validated this HD/HE research portfolio analysis protocol. Ultimately, HD/HE projects were characterized by their disease focus, populations of study, the health equity determinant(s) addressed, and the type and phase of research being conducted. For all interventional research, there was further assessment of the type and setting of intervention delivery as well as utilization of evidence-based community engagement and intervention sustainability approaches. RESULTS: A total of 58 new HD/HE research projects were funded from 2016 to 2020. The results of the descriptive analysis described here help provide a holistic picture of NINDS's HD/HE research portfolio, revealing strengths and gaps in the portfolio as well as opportunities ripe for future investment. DISCUSSION: NINDS developed a standardized HD/HE research categorization methodology with imbedded quality control checks that is intended to be transparent, accurate, and reproducible. The results of this HD/HE research portfolio analysis will serve as a baseline from which to assess the success of NINDS's research investments going forward.