Request for Feedback on Proposed NIH Research Plan on Rehabilitation
This community and its associated Request for Information (RFI) aim to gather broad public input on the draft research objectives of the NIH Research Plan on Rehabilitation. The National Center for Medical Rehabilitation Research (NCMRR) within the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) leads the NIH Medical Rehabilitation Coordinating Committee and issued the RFI on its behalf.
The NIH Medical Rehabilitation Coordinating Committee is in the process of updating the NIH Research Plan on Rehabilitation, as required by Public Law 114-255 and is seeking guidance from the community of stakeholders involved in this research. This community augments two RFIs in the process to seek input from the field. The draft Themes and Objectives described here have been informed by a subcommittee of the National Advisory Board for Medical Rehabilitation Research and NIH staff.
Specifically, NIH requests feedback on the following:
• Do the proposed themes and objectives capture the current direction and provide inspiration for future rehabilitation research goals?
• Do the proposed themes and objectives cover the needs and priorities of consumers/beneficiaries of rehabilitation research?
• Are there noticeable gaps or opportunities not included or missing?
THEME A: REHABILITATION ACROSS THE LIFESPAN
• A1: Increase the quality of evidence for rehabilitation interventions in populations of people with disabilities across the lifespan (pediatrics through geriatrics) including both aging with a disability and aging into disability.
• A2: Determine the mechanisms by which lifestyle and wellness interventions for physical activity, nutrition, and sleep can promote overall health and prevent comorbidities to improve health-related quality of life.
• A3: Investigate health disparities and intervene to reduce their impact on the effectiveness, implementation, and uptake of rehabilitation interventions, common medical interventions, and preventive services for people with disabilities.
• A4: Improve transitions through the lifespan (e.g., from childhood to adolescence, from adolescence to adulthood, from adulthood to late life) to enable the highest level of function from health interventions.
• A5: Capitalize on programs like All of Us and other large data sets to study the natural history of conditions that cause disability and common secondary conditions associated with disability.
THEME B: COMMUNITY AND FAMILY
• B1. Develop self-management strategies and interventions to promote and maintain independence and participation for people with disabilities in the community of their choice.
• B2. Evaluate the stressors, challenges, and benefits experienced by caregivers of individuals with disabilities, and formulate approaches to address the impact of these on the health of both the caregiver and the care recipient.
• B3. Examine interventions to reduce the impact of sociodemographic influences on the outcomes of rehabilitation interventions designed to promote independence and community integration.
• B4. Include consumers of rehabilitation services as partners in the research enterprise.
• B5. Identify the characteristics and strategies that enable families and communities to provide independence and quality of life, while reducing barriers, for persons with disability, particularly with respect to current US demographics and family structure.
THEME C: TECHNOLOGY USE AND DEVELOPMENT
• C1. Develop systems to facilitate the rapid development of effective and affordable user-centric technologies. This includes providing a framework for sharing user preferences and feedback on experience with existing devices, promotion of open-source standards for sharing common rehabilitation technologies, and generation of open-source computational models for designing new rehabilitation technologies and predicting their functional outcomes.
• C2. Increase access to rehabilitation services through telehealth assessment, delivery of care, and adherence monitoring. This includes combining both novel sensors and technology with the science of behavior change and motivation research.
• C3. Define new and innovative metrics and outcomes measures that link functional outcomes with the physiological and psychosocial processes driving them for application in the use and development of various technologies for rehabilitation.
• C4. Apply augmented intelligence systems for processing and interpreting data from individuals and populations. This may include development of intelligent systems for processing the multi-modal data available from existing and new sensing systems applicable to laboratory and community settings.
THEME D: RESEARCH DESIGN AND METHODOLOGY
• D1. Expand the evidence base for new and existing treatment interventions, emphasizing validated protocols associated with improved outcomes and the understanding of underlying mechanisms for treatment effects.
• D2. Conduct clinical trials based on an integrated translational model that considers all stages of rehabilitation science development including intervention development and refinement, efficacy, effectiveness, and implementation and dissemination. Incorporate randomized, controlled clinical trials, trials with novel statistical designs such as adaptive and pragmatic designs and disease-specific statistical analyses to optimize power where applicable.
• D3. Use innovative health services research and epidemiological methods within existing databases and clinical registries to evaluate relationships between rehabilitation interventions, technologies, devices, and patient-centered outcomes in a real-world context.
• D4. Encourage dissemination and implementation research to achieve more efficient and successful translation of evidence-based approaches and best practices.
• D5. Use economic methodologies to measure the impact of rehabilitation interventions, technologies, and devices on health-related behaviors, healthcare utilization, and health outcomes.
• D6. Improve the quality and quantity of data sharing from clinical trials where appropriate, including promotion of common data elements.
THEME E: TRANSLATIONAL SCIENCE
• E1. Leverage existing interventions and knowledge to develop rapid solutions that are responsive to the needs of the rehabilitation community.
• E2. Integrate cell-, tissue-, and model organism-based research to identify the principal physiological mechanisms and key interventional targets in the adaptive and maladaptive changes associated with disabling conditions.
• E3. Support "bench-to-bedside-to-bench" translation to better understand mechanisms of disease and recovery, promoting the use of animal models informed by clinical conditions.
• E4. Use a staged intervention development and refinement process to generate mechanism-based, rehabilitation strategies for the clinic that exploit the beneficial biological and physiological adaptations discovered in the laboratory.
• E5. In advancement of precision medicine for rehabilitation, support the development and use of biomarkers associated with specific injuries, illnesses, or disorders that are prognostic or guide prescription of rehabilitation interventions (e.g. biotypes to identify responders and non-responders) as well as biomarkers to assess target-engagement and other biological and physiological changes expected to predict clinical efficacy.
• E6. Determine the effectiveness of integrative, multimodal interventions that target multiple synergistic mechanisms to enhance and accelerate recovery following injury or disease.
THEME F: BUILDING RESEARCH CAPACITY AND INFRASTRUCTURE
• F1. Develop training programs that provide diverse researchers and clinician-scientists at all career stages access to cutting edge, diverse approaches/methodologies and the insight needed to understand how they can be used to advance rehabilitation science.
• F2. Support individual training and career development awards from rehabilitation researchers as well as early-career awards and pilot funding though infrastructure granting mechanisms.
• F3. Develop an infrastructure that connects rehabilitation researchers across domains of expertise and career stages to create a robust, self-sustaining network.
• F4. Continue to expand the network of rehabilitation researchers by promoting rehabilitation and disability research in trans-NIH and Common Fund programs.
• F5. Develop ways to incentivize interdisciplinary collaboration in rehabilitation research. Develop metrics that can be used to evaluate and encourage interdisciplinary science that accurately reflect the contributions of scientists who work to drive rehabilitation research.
• F6. Provide a strategy for recruiting individuals with disabilities and underrepresented minority groups into the field of rehabilitation research; consider enhanced diversity supplements and partnerships with other federal agencies (e.g., National Science Foundation; National Institute on Disability, Independent Living, and Rehabilitation Research).
Submitting a Response
Community responses are voluntary and may be submitted either anonymously or with identifying information. Do not include proprietary, classified, confidential or sensitive information in a response.
Comments may be compiled for discussion and may appear in related reports. Any personal identifiers (names, e-mail addresses, etc.) will be removed when responses are compiled. Processed, anonymized results will be shared internally with NIH staff members and any member of scientific working groups convened by the NCMRR, as appropriate.
If contact information is provided, NIH Program staff may contact respondents and may invite some respondents to present concepts for discussion at an ideation summit or other workshop. There will be no obligation to do so, and responses will otherwise be considered confidential.
This community is intended for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the federal government. The NIH does not intend to make any awards based on responses gathered through this community or the RFI, or to otherwise pay for the preparation of any information submitted or for the government's use of such information.
Responses must be submitted by 11:59 pm (EST) November 15, 2020, to Rehabilitation@nih.gov.
Please direct all inquiries to:
Theresa Cruz, Ph.D.
NCMRR Director, NICHD