Health Services and Health Equity Research: How do we Engage and Recruit Diverse Populations in Neurological Research*
Time: 3:30 PM to 5:00 PM
Description
The global burden of neurological diseases is increasing and these disease continue to disproportionately impact underserved and under-represented populations. It is exciting to see therapeutic breakthroughs for several previously untreatable neurological diseases. However, several clinical trials that have helped bring new therapeutic options to our clinical practice have been unsuccessful in engaging and recruiting diverse patient populations. Underserved and under-represented populations have been excluded from neurologic research for a variety of reasons. Diversity in clinical trial enrollment and retention; with representative groups from diverse racial, ethnic, gender, age, disability, socioeconomic, religious backgrounds is imperative to ensure that we fully understand the impact of our research and the clinical translation of research, that no groups of patients are systematically excluded from research or from clinical access to new therapies and innovations. Advances in digital health, artificial intelligence, machine learning can have several promising applications to bridge gaps in access to health for promoting neurological health. But if these innovations exclude specific populations, then the models and algorithms that they will be trained on will further worsen healthcare disparities. Funding agencies need to encourage researchers to think about effective strategies for recruiting and retaining diverse patient populations similar to other aspects of scientific rigor. Scientific journals should encourage authors to publish their work with specific attention to sharing their approaches for recruiting and retaining diverse patient populations.
Objectives
Explain how HSR approaches can improve the recruitment and retention of diverse patient populations in neurologic research.
Discuss the role of funding agencies and peer reviewed journals in bridging healthcare disparities for neurologic research.
Discuss how digital health/AI can be leveraged to bridge the digital divide for promoting neurologic health.
Speakers
Health Equity and Representation Science in Neurocritical Care
DescriptionIn this session, we will discuss recruitment, retention, and health equity for acute neurological care and research.
SpeakersInfluences on Health Preventive Behaviors After Minor Stroke: Understanding Patient Perceptions and Practices in an Urban Underserved Population
DescriptionBlood pressure (BP) self-management and physical activity (PA) can reduce risk of stroke recurrence. However, gaps exist between professional recommendations and real-world implementation among patients discharged home after a minor stroke. We conducted semi-structured qualitative interviews among minor stroke patients (n=14), with BP and PA monitoring. We assessed knowledge of guidelines, as well as perceived barriers and facilitators influencing recommended behaviors. Three themes emerged: 1) Positive outcome expectations; 2) Self-efficacy; and 3) Agency. While participants associated BP control with reduced recurrence risk and PA with functional recovery (positive outcome expectations), barriers included limited knowledge of recommended behaviors and fear of falling after returning home (limited self-efficacy). Although constraints such as access to care and neighborhood crime were notable, individuals with high self-efficacy used action planning to successfully navigate these obstacles. BP and PA monitoring with feedback allowed for self-regulation, goal setting, and problem solving (improved agency with complementary social support).
SpeakersPromoting Best Practices in Diversity Enrollment in Clinical Studies: An NIH Perspective
DescriptionDuring the special interest group (SIG) session titled, “How do we engage and recruit diverse populations in neurological research”, Dr. Benson will describe and discuss the NINDS health equity strategic plans; define health disparities and health equity from the NINDS perspective; discuss the role of the NINDS in addressing adverse SDOH, discuss recent and new funding announcements; NINDS plan for boosting diversity enrollment in clinical trials; and discuss the role of the NIH/NINDS in health service research.
Representation in Clinical Trials: Strategies for Study Design and Recruitment
DescriptionSeveral studies have demonstrated minoritized individuals with neurologic conditions are often not represented in clinical trials for those conditions. In this session, we will review the literature about representation in clinical trials. We will also consider, across the spectrum of activities surrounding the design and conduct of trials, methods by which to improve the representativeness of trial populations.
Speakers