Request for Information: Soliciting Input on Areas of Health Disparities and Inequities in Neurological Disease and/or Care in the United States Across the Lifespan

Notice Number: NOT-NS-20-026

Key Dates
Release Date: March 31, 2020
Response Date: June 15, 2020

Related Announcements
None

Issued by
National Institute of Neurological Disorders and Stroke (NINDS)

Purpose

The purpose of this time-sensitive Request for Information (RFI) is to seek input from scientists, clinicians, patients, families, caregivers, advocates, and the broader community on the most important knowledge gaps, health and research needs, and promising opportunities to help guide the National Institute of Neurological Disorders and Stroke’s (NINDS) research on health disparities and inequities in neurological diseases and disorders.

Background

The NINDS is deeply committed to the elimination of all health disparities and inequities in neurological conditions and care through the funding of innovative research, from basic science through implementation/dissemination, aimed at identifying, monitoring and targeting biologic, environmental, social, behavioral, and healthcare system factors related to race/ethnicity, socioeconomic status, geographic location, sex, sexual orientation, gender identity, educational attainment, age, and disability, that confer neurologic disease and its treatment disproportionately and adversely.

In 2010, the NINDS organized a workgroup of the National Advisory Neurological Disorders and Stroke (NANDS) Council to generate recommendations on how the institute should address disparities and inequities in neurological disorders (2011 Report of the NINDS Advisory Panel on Health Disparities Research). This workgroup recommended that a transparent and systematic approach be developed to enumerate the issues and guide funding decisions.

Based on these recommendations, the NINDS/Office of Global Health and Health Disparities (OGHHD) in the Division of Clinical Research (DCR) is embarking on a strategic planning process to guide NINDS’s research efforts in this space for the next 5-10 years. One input into this strategic planning process is to create a prioritized, comprehensive list of known health disparities and inequities in neurological diseases, treatment, and care. Second, NINDS is identifying knowledge gaps where new research investments will be critical to advancing the understanding and elimination of health disparities and inequities in neurological disorders. Additionally, NINDS seeks input on potentially transformative research approaches and/or promising interventions that warrant additional investment. We plan to supplement external input by reviewing the literature, analyzing recent NIH research investments to identify strengths and gaps, and assessing the efforts of other relevant research funders and funding streams.

This effort will culminate in a public workshop and published report of the process, findings, results and recommendations. It is our goal that this process be data-driven, standardized, and transparent, and will assemble a wide range of perspectives and stakeholders interested in the elimination of disparities and inequities in neurological care, outcomes, treatment, access and provision of services, and research.

Information requested

The NINDS is soliciting information on known and/or perceived areas of health disparities and inequities in neurological disease, treatment, care, and services, as well as determinants for such disparities and inequities. These disparities and inequities may exist across several demographic factors, including race/ethnicity, food/housing insecurity, socioeconomic status, geographic location, sex, sexual orientation, gender identity, educational attainment, age, disability, etc. Responses are encouraged from all interested stakeholders, including health care providers, researchers, individuals and/or family members with neurological diseases, patient advocates, health advocacy organizations, scientific or professional organizations, federal agencies, as well as other interested members of the public. Organizations may consider submitting a response on behalf of the organization or share this RFI link with its members.

Please submit responses to the following as it pertains to your field of study, area of expertise, or personal or professional experience:

  • Identify area(s) of health disparity and/or inequity (including race/ethnic, sex/sexual orientation/gender identity, regional/geographic, age, educational attainment, or socio-economic differences) in neurological disease, treatment, care, and/or service in the U.S.
  • Identify determinants that help explain this/these health disparities and /or inequities
  • Identify evidence-based research strategies, health services, policies, and other interventions that address these disparities/inequities in neurological disease, treatment, service, or care
  • Identify knowledge gaps about disparities/inequities in neurological conditions
  • Identify potential approaches for addressing these neurological disparities and/or inequities through ongoing or new research collaborations or interventions

For the purposes of this RFI, research on health disparities includes a particular type of health difference that is closely linked with economic, social, or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater social or economic obstacles to health based on their racial or ethnic group, religion, socio-economic status, gender, age, or mental health; cognitive sensory or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion 1 .

Research on health equity refers to the principle underlying a commitment to reduce, and ultimately eliminate, disparities in health and in its determinants, including social determinants. Pursing health equity means striving for the highest possible standard of health for all people and giving special attention to the needs of those at greatest risk of poor health, based on social conditions 2 .

How to Submit a Response

Reponses to this RFI must be submitted electronically using the web-based form at: https://www.ninds.nih.gov/RFI-NOT-NS-20-026

Responses will be accepted through June 15, 2020.

Responses are voluntary and may be submitted anonymously. Responders are advised that the Government is under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. Submitted information will not be considered confidential. Responses may be shared publicly on an NIH website. Please do not include any personally identifiable or other information that you do not wish to make public. No proprietary, classified, confidential, or sensitive information should be included in your response.

This request is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the United States Government. The NIH will not make any awards based on responses to this RFI or pay for the preparation of any information submitted or for the Government’s use of such information.

References

http://www.healthypeople.gov/2020/about/disparitiesAbout.aspx

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3863701/

Inquiries

Please direct all inquiries to:

Email: OGHHDRFI@NINDS.NIH.GOV