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.BackgroundThe 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.ResultsRespondents 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.DiscussionRespondent 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.
|State||Published - Aug 15 2023|
Bibliographical noteFunding Information:
The authors thank individuals and organizations who provided source materials for this article through their RFI responses. They thank the Health Equity Coordinating Committee and the Division of Clinical Research at NINDS for feedback and input on this manuscript draft (especially Lauren E. Ullrich, Kristina K. Hardy, and Sara Dodson). This article does not intend to imply or summarize the interest of the National Institute of Health or Office of Global Health and Health Disparities or any other grant funding entity. It comprises suggestions and opinions of experts and community stakeholders across the fields of neurological disease and health disparities.
The Article Processing Charge was funded by the NIH/National Institute of Neurological Disorders and Stroke.
© American Academy of Neurology.
ASJC Scopus subject areas
- Clinical Neurology