Goals and Objectives
Goal 1: Research
Advance the science of disability health by supporting innovative, rigorous, person-centered research
Disability health research places individuals, not impairments, at the center of scientific inquiry. It recognizes disability as the product of dynamic interactions among medical conditions and biological, behavioral, sociocultural, and environmental factors. Advancing the science of disability health depends on supporting innovative, methodologically rigorous research that centers the goals and experiences of disabled people. By fostering cutting-edge methodologies and person-centered approaches, researchers can generate evidence that informs policies, clinical practices, and interventions that promote the health and well-being of people with disabilities.
Objective 1.1
Catalyze advances in conceptualizing, defining, and measuring disability for health research
Disability data26 are essential for understanding the experiences and needs of disabled people. Within the context of biomedical research and clinical care, these data may represent a health outcome or a demographic variable. Given that disability is a complex construct that differs by sociocultural context, one consistent definition of disability may not be possible. Definitions of disability have been created to fit the context in which they are applied,27 with dozens of definitions in federal statute.6 Consequently, measurement approaches differ widely, hindering data harmonization and cross-study comparisons. To address these issues, NIH will support research to develop new conceptual frameworks and associated definitions and measures of disability that reflect current understandings of disability and are suitable for use in a variety of health and research settings. Research that involves collaborative partnerships with people with disabilities, their families and care partners, and community organizations will help ensure that disability measures are culturally responsive, accessible, and capable of capturing the full range of disability experiences needed for research purposes.
Objective 1.2
Promote research that examines the biological, behavioral, sociocultural, and environmental factors that influence the health and well-being of people with disabilities across the lifespan
The health and well-being of disabled people is shaped by constantly interacting biological, behavioral, sociocultural, and environmental factors that vary over the life course. NIH will promote interdisciplinary, longitudinal, and community-engaged clinical and health services research to clarify these pathways and pinpoint modifiable targets at the individual, family, community, and societal levels. As people with disabilities are multifaceted and have a wide range of experiences, NIH will encourage researchers to incorporate this complexity and heterogeneity into their research designs, methods, and measures to conduct meaningful and effective research.
Objective 1.3
Support research to reduce disparities and optimize health outcomes for people with disabilities
People with disabilities experience a range of health and health care disparities, including higher rates of chronic disease and poorer access to preventive and specialty care than people without disabilities.28–30 Previous research has identified a range of factors that contribute to disparities for disabled people, such as inaccessible health care facilities and equipment, insufficient health care provider training and knowledge regarding disability, and socioeconomic factors.30–32 NIH will support clinical and translational research to develop, test, refine, and implement interventions for people with disabilities that reduce disparities and allow them to attain their highest level of health possible. Studies that rigorously evaluate multilevel and complex interventions33,34 to impact the whole person health of people with disabilities will be encouraged. In addition, interventions are needed that address factors that lead to poor health outcomes for people with different types of disabilities or different levels of support needs, as these factors may be unique to specific subgroups and not addressed in interventional studies of the general population of disabled people.
Objective 1.4
Foster research on health promotion and disease prevention for people with disabilities
Achieving and maintaining good health requires access to the tools and information necessary to make healthy choices and prevent illness or injury. Unfortunately, health promotion and disease prevention programs frequently are not tailored to the needs of disabled people. In addition, health care providers often focus solely on a person’s disability35 rather than providing care that meets their full range of health needs. Gaps in care include not addressing health conditions caused or aggravated by a person’s disability, as well as not treating conditions that are unrelated to their disability. NIH will support research projects to develop evidence-based health promotion and disease prevention programs that address the needs of individuals with different types of disabilities and support needs. Projects with an emphasis on physical activity, nutrition, mental health, and community-based initiatives will be encouraged.
Goal 2: Workforce
Foster a highly skilled, multidisciplinary, and sustainable disability health research workforce
Expanding research capacity in disability health research requires creating accessible entry points into the biomedical and behavioral scientific ecosystem for trainees and early career researchers and providing consistent funding opportunities to sustain careers in disability health research. It also necessitates educating the broader scientific workforce about disability health research so that disabled people may be meaningfully included in and benefit from all research, not just research focused on specific disabilities.
Objective 2.1
Support the development of training opportunities in disability health research
Developing targeted training opportunities in disability health research is critical to building and sustaining a skilled research workforce. NIH will support individual fellowships, institutional training awards, and career development awards that support trainees and early career faculty in developing rigorous methods to address pressing issues in disability health research. Because many trainees interested in disability health research may themselves have a disability, creating accessible environments can support their success.
Objective 2.2
Promote and support policies, programs, and opportunities to advance the careers of disability health researchers
Promoting the growth and sustainability of the disability health research workforce requires deliberate initiatives to recruit, retain, and support disability health researchers at all career stages. Disability health researchers require the same opportunities for career advancement and sustainable funding sources as other biomedical and behavioral researchers. To highlight and promote disability health research opportunities, NIH will identify disability health research as a research priority area across NIH ICOs. In addition, NIH will promote policies and programs that raise awareness of disability health research and connect disability health researchers to career advancement opportunities.
Objective 2.3
Support the development and implementation of disability health curricula in biomedical and behavioral research training
Given that people with disabilities may experience a range of medical conditions that affect their health and well-being, as well as nonmedical factors that lead to poorer health outcomes, it is important that the concept of disability health be broadly disseminated to researchers. Incorporating disability-specific curricula into research training programs is essential to enhance researcher preparedness, knowledge, and competence in disability health. For example, curricula could include discussion of conceptual models of disability, the importance of obtaining disability demographic data, and accessibility requirements for research prescribed by federal law. NIH will support the creation and implementation of curricula based on current evidence, best practices, and the lived experiences of disabled people. These curricula will ensure that future researchers are well equipped with foundational knowledge and skills that are needed to promote the inclusion of people with disabilities in research, which may make research findings more generalizable or allow for subgroup analyses.
Goal 3: Resources and Infrastructure
Support accessible, state-of-the-art disability health research resources and infrastructure
Conducting innovative, rigorous, person-centered disability health research requires modern, well-supported resources and infrastructure that enable the full participation of disabled people as researchers and research participants. Strategic investments in institutional capacity development and collaborative research networks foster a more robust and representative disability health research ecosystem. Enhancing the ethical and standardized collection, analysis, and management and sharing of disability data further strengthens scientific rigor, transparency, reproducibility, and the production of actionable evidence to inform policies and practices that improve health outcomes for people with disabilities.
Objective 3.1
Develop and disseminate resources to help researchers and institutions ensure that their research facilities, equipment, technology, and information are accessible per federal laws and regulations
Ensuring that research data, resources, and infrastructure are accessible is required by law36 and is essential for ensuring that disabled people can conduct and/or participate in scientific research. Meeting accessibility standards requires practical guidance, ongoing training, and institutional accountability. NIH will assist researchers and institutions in meeting accessibility standards by supporting the development and dissemination of accessibility guides, toolkits, and training materials pertinent to the biomedical and behavioral research ecosystem and informed by federal laws, regulations, and standards.
Objective 3.2
Develop programs, policies, and resources to maximize the inclusion of people with disabilities as participants in clinical research
People with disabilities often are excluded from or not actively recruited as participants in research, and justifications for study eligibility criteria frequently are not provided.22-24 The exclusion of disabled people from research (including clinical trials) without appropriate scientific or ethical justification is discriminatory and counter to federal regulations and research guidelines, and it limits study generalizability.23 To address this, NIH will develop programs, policies, and resources that provide guidance and recommendations for how researchers and institutions can prevent unnecessary and subjective exclusion of people with disabilities in research. Particular attention should be paid to ensuring that disabled people can utilize reasonable accommodations during the informed consent process, such as alternative consent formats and supported decision-making.
Objective 3.3
Support the development of collaborative disability health research networks
Collaborative research networks facilitate biomedical and behavioral research and research training by promoting interdisciplinary partnerships, allowing greater access to participant populations, providing varied training opportunities for students and early career researchers, and promoting knowledge exchange. NIH will support the establishment of scientific interest groups, multi-institutional research consortia, and community–academic partnerships in disability health research. Through enhanced collaboration, joint projects, and shared resources, these networks will stimulate innovation, accelerate discovery, and amplify the impact of disability health research.
Objective 3.4
Promote responsible management and sharing of disability data in NIH-funded research
Disability data are essential for identifying health disparities among disabled people, evaluating the effectiveness of interventions to mitigate those disparities, and informing health policy. Disability data should be considered essential demographic information that is collected whenever other demographic data are collected.26 NIH will support the development of appropriate disability data collection protocols, analytical methods, dissemination guidelines, and training materials that prioritize ethical data practices, such as transparency, privacy and confidentiality, and appropriate disaggregation. Prioritizing ethical data practices enhances both scientific integrity and public trust and will expand the evidence base for improving health outcomes among people with disabilities.
Goal 4: Stewardship
Engage in collaborative, responsible, and ethical management of disability health research activities
Collaborative, responsible, and ethical conduct is essential for the effective management of disability health research activities. Actively engaging disabled people throughout the entire research process helps ensure that studies reflect community priorities and generate meaningful, applicable findings. Evaluating and refining organizational structures and processes supports efficient use of resources and responsiveness to evolving needs. Maintaining high standards of scientific integrity strengthens accountability, builds trust, and advances high-quality research that benefits people with disabilities and their communities.
Objective 4.1
Promote robust public participation and community engagement in disability health research activities
Meaningful public participation and community engagement are essential to ensuring that disability health research activities accurately reflect the needs, priorities, and experiences of disabled people and their communities. NIH will develop a community engagement plan that outlines the strategies it will use to obtain authentic, intentional, and ongoing engagement regarding disability health research priorities and activities. The plan will include structured mechanisms for public outreach and participation (e.g., advisory boards, community workshops, compensated community partner roles) that are accessible to people with various types of disabilities. NIH also will support the development of resources that promote the engagement of disabled people throughout the entire research process—from study conceptualization and design to data collection and analysis to communication and dissemination of findings—thereby increasing the relevance, rigor, and applicability of research outcomes.
Objective 4.2
Regularly evaluate the effectiveness of disability health research organizational structures and processes
The DHRP, DHRCC, and DHRWG are responsible for managing and/or providing input on disability health research activities at NIH. Regular evaluation of these structures and their processes is vital to ensure that disability health research activities are effectively managed and aligned with agency priorities. NIH will engage in systematic, data-informed assessments to identify and eliminate inefficiencies, inform strategic use of resources, and measure programmatic success. By embedding regular monitoring into the management of disability health research activities, NIH can flexibly adapt to emerging scientific priorities, changing funding landscapes, and the varying needs of disability communities.
Objective 4.3
Ensure disability health research activities are conducted according to the highest standards of scientific integrity
Ensuring scientific integrity in disability health research requires going beyond adherence to principles for ethical research and professional practices to actively address the ways disabled people have been excluded, misrepresented, or harmed in scientific research. For example, study designs should eliminate biased assumptions about disability, promote accessibility and access to reasonable accommodations at every stage, and respect participants’ autonomy and lived experience. NIH will encourage accessible protocols, clear eligibility justifications, and the use of validated disability measures and will offer dedicated training and guidance on bias mitigation and responsible data stewardship.