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Office of The Director, National Institutes of Health (OD)

Purpose

The National Institutes of Health (NIH) is developing the NIH Strategic Plan for Disability Health Research FY26-FY30. The purpose of this Request for Information (RFI) is to solicit feedback on the draft framework for this plan.

Introduction

More than 1 in 4 people in the United States have a disability (https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html). According to the Americans with Disabilities Act (https://www.ada.gov/topics/intro-to-ada/), a person with a disability is someone who has a physical or mental impairment that substantially limits one or more major life activities, has a history or record of such an impairment (such as cancer that is in remission), or is perceived by others as having such an impairment (such as a person who has scars from a severe burn).

Disabilities may be present at birth or acquired at any point across the lifespan and are considered a natural part of the human experience. They may be visible (e.g., a person with a spinal cord injury using a wheelchair) or invisible (e.g., a person with Long COVID who experiences intense fatigue). People may have more than one disability and the impact of their disability or disabilities may change over time.

Disability is a complex, multidimensional construct that may be conceptualized in different ways. Historically, the predominant model of disability in research and clinical care has been the medical model of disability. The medical model of disability views disability as an individual’s physical or mental impairment(s) that must be “fixed” or “cured” in order to make a person more “normal.” In contrast, the social model of disability, which has featured prominently in the disability rights movement, emphasizes that disability is not primarily caused by a person’s impairment(s), but rather by environmental, social, and attitudinal barriers that may prevent people from fully participating in society.

People with disabilities lead rich and full lives but may experience a range of medical conditions that affect their health and well-being. In addition, people with disabilities may face non-medical factors in their environments that lead to poorer health outcomes, such as discrimination and inaccessible facilities. Research that seeks to understand and address the effects of both medical conditions and environmental factors on the health and well-being of people with disabilities we term disability health research.

The Strategic Plan Development Process

NIH is committed to promoting the health and well-being of people with disabilities. Through investments in research, training and career development, and resources and infrastructure, NIH seeks to advance disability health research and improve disability inclusion in the biomedical and behavioral research ecosystem. The success of these efforts requires a well-coordinated approach that includes input from a wide range of individuals and organizations.

To accomplish this, NIH is developing the NIH Strategic Plan for Disability Health Research FY26-FY30. The NIH Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI) launched the agency-wide strategic plan development process in September 2024. Between October and December 2024, DPCPSI hosted a series of community roundtable discussions and a town hall to obtain input from people with disabilities and interested individuals and organizations regarding disability health research priorities. This input was utilized to develop a draft framework for the strategic plan. NIH now seeks your feedback on the draft framework. Responses will be used to help shape the framework and the ensuing strategic plan.

Information Requested

NIH seeks feedback on the draft framework for the strategic plan from a wide range of interested individuals and organizations, including: people with disabilities; care partners; direct support professionals; health care professionals; researchers in academia and industry; students; scientific organizations and professional associations; advocates and advocacy organizations; federal agencies; state, local, tribal, and territorial governments; and members of the general public.

The draft framework for the strategic plan is listed below. All comments are welcome, but NIH specifically requests your input and feedback on the following:

• The appropriateness of the draft framework’s cross-cutting themes and additional themes to consider.
• The appropriateness of the draft framework’s strategic goals and potential opportunities, including potential benefits, drawbacks, or challenges, and additional goals or opportunities to consider. 
• Suggestions for indicators to measure progress on the draft strategic goals.
• Suggestions for ways NIH can share its strategic plan and communicate progress, success, and impact.

NIH Strategic Plan for Disability Health Research Framework

Cross-Cutting Themes

The themes below are key considerations regarding disability and people with disabilities that cut across the four strategic goals of the draft framework:

• Public Participation and Community Engagement: The biomedical and behavioral research community should involve people with disabilities in identifying disability health research priorities and build trust-based, long-term, and two-way relationships with disability communities.
• Accessibility: Research and healthcare facilities, equipment, technology, and information must be accessible so all people, including people with disabilities, can fully and independently use them.
• Complexity and Heterogeneity: Disability is not monolithic; people with disabilities are multifaceted and have a wide range of experiences. This complexity and heterogeneity must be acknowledged in order to conduct meaningful research and community engagement.
• Dynamics of Disability: Disability is a dynamic process involving the interaction of medical conditions that may fluctuate over time with variable behavioral, sociocultural, and environmental factors. When conducting disability health research, these dynamics should be incorporated in research designs, methods, and measures.

Strategic Goals

Goal #1: Support high-quality, innovative, and impactful research to improve the health and well-being of people with disabilities of all ages.

Knowledge gaps exist regarding the health and well-being of people with disabilities. Research is needed to further understand and address the health needs of people with disabilities across the lifespan. In addition, research resources and infrastructure to support the study of disability health are also needed.

Potential Opportunities:

• Develop measures of disability relevant to health and health care delivery that can be easily collected with other demographic data.
• Establish resources to track longitudinal health outcomes of people with disabilities in the context of sociodemographic backgrounds, coexisting health needs, and social determinants of health across the lifespan.
• Encourage research to develop interventions to address the health needs of people with disabilities, including addressing the role of ableism and diagnostic overshadowing (i.e., the misattribution of symptoms of a medical condition to an existing medical condition or disability).
• Identify and address barriers and facilitators to health care experienced by people with disabilities.
• Develop novel technologies and leverage existing technologies to improve the health and functioning of people with disabilities.

Goal #2: Build and sustain meaningful internal and external partnerships to promote disability health research.

Advancing research on the health and well-being of people with disabilities requires genuine partnerships among NIH Institutes, Centers, and Offices (ICOs) and between NIH and the extramural community, including people with lived experience and community organizations. NIH-supported research can be enhanced and communicated more effectively by utilizing the skills, expertise, and experience of partners in the community and in other federally supported research programs working to promote the health of people with disabilities.

Potential Opportunities:

• Facilitate engagement opportunities with the public by designating a central point of contact for disability health research at NIH.
• Partner with NIH ICOs and community organizations to develop and host disability health research events, solicit input and feedback on research topics, and communicate and disseminate research findings.
• Expand collaborations between federal agencies with expertise and portfolios in disability health research.
• Increase awareness of disability-relevant research initiatives at the NIH to increase the number of applications.

Goal #3: Promote engagement and inclusion of people with disabilities in the biomedical and behavioral research ecosystem.

Meaningful participation of people with disabilities in the research process is needed. This includes engagement at all stages of the scientific process from identifying priorities to designing, reviewing, conducting, and communicating results of studies. People with disabilities may be unnecessarily excluded as participants in clinical research studies, either explicitly or implicitly. Participation and appropriate representation of people with disabilities in research will strengthen the significance and generalizability of study findings. Advancing research on the health and well-being of people with disabilities requires rigorous collection of disability data in NIH-funded research. This must be done in a safe, secure, and non-stigmatizing manner to minimize potential negative consequences of disability disclosure.

Potential Opportunities:

• Include people with lived experience of disability in the design, review, conduct, and dissemination of research.
• Encourage data collection about disability representation in all NIH-supported research.
• Develop and evaluate accessibility toolkits to assist in the inclusion of people with disabilities as participants in clinical research.
• Generate evidence to support the development, adaptation, and/or implementation of guidelines for prevention, diagnosis, and treatment of health conditions that may manifest differently or would benefit from a different preventive, diagnostic, or care approach in disabled populations. 

Goal #4: Develop a highly skilled scientific workforce that includes researchers with disabilities and researchers trained in disability health research.

Researchers with disabilities are an overlooked resource in the biomedical and behavioral research ecosystem and have unique and valuable perspectives to contribute. Supports and accommodations should be provided to attract and retain researchers with disabilities in their chosen research disciplines. Furthermore, building interdisciplinary careers in disability health research will accelerate improved health care for disability populations.

Potential Opportunities:

• Support researchers with disabilities across all biomedical and behavioral research disciplines throughout their careers.
• Support individual and institutional training efforts in disability health research.
• Increase cultural competency in disability at NIH, including more representation of people with disabilities in all aspects of the research enterprise.
• Support staff, employers, and supervisors to implement inclusive design practices and ensure accessibility of events and workplaces.

How to Submit a Response

Responses should be submitted via the online RFI feedback form. Alternatively, responses and attachments may be submitted via email to [email protected]. Please include “RFI Response” in the subject line of the email. All responses must be received by 11:59:59 p.m. ET on March 12, 2025.

Responses to this RFI are voluntary and may be submitted anonymously. Please do not include any personally identifiable information or any information that you do not wish to make public. Proprietary, classified, confidential, or sensitive information should not be included in your response. NIH will use the information submitted in response to this RFI at its discretion. NIH reserves the right to use any submitted information on public websites, in reports, in summaries of the state of the science, in any possible resultant solicitation(s), grant(s), or cooperative agreement(s), or in the development of future funding opportunity announcements. This RFI is for informational and planning purposes only and is not a solicitation for applications or an obligation on the part of the Government to provide support for any ideas identified in response to it. Please note that the Government will not pay for the preparation of any information submitted or for use of that information.

We look forward to your input and hope that you will share this RFI opportunity with interested individuals and organizations.

Inquiries

Please direct all inquiries to:

NIH Disability Research Coordination Team
Division of Program Coordination, Planning, and Strategic Initiatives
Office of the Director
National Institutes of Health
Email: [email protected]