Summary Minutes – December 5-6, 2022

National Advisory Board on Medical Rehabilitation Research (NABMRR)
National Center for Medical Rehabilitation Research (NCMRR)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Board Members Present:

Ex-Officio Members Present:

Ex-Officio Members Absent:

National Institutes of Health (NIH) Staff and Visitors Present on Videocast:

Day 1: December 5, 2022

The VideoCast recording of the first day of the December 2022 NABMRR meeting is available online. Time stamps (in parentheses) direct readers to each section of the meeting recording.

Welcome, Approval of Minutes, and Future Meetings (0:03)

NCMRR Deputy Director and NABMRR Executive Secretary Ralph Nitkin, Ph.D., opened the virtual meeting at 10:01 a.m. Eric Perreault, Ph.D., took roll call and welcomed Lewis Wheaton, Ph.D., and Kathleen Zackowski, Ph.D., OTR, as new members of the NABMRR. A motion to approve the minutes of the May 2022 NABMRR meeting carried. Future meeting dates are as follows:

• May 1–2, 2023
• December 4–5, 2023
• May 6–7, 2024

NICHD Update from the Director (6:21)

Diana W. Bianchi, M.D., Director, NICHD

Dr. Bianchi’s presentation included updates on NICHD’s 60th anniversary, the NIH budget, NIH-wide initiatives with NICHD involvement, firearms and violence research, COVID-19 research, and staffing.

NICHD 60th Anniversary (8:50)

NICHD held its 60th Anniversary Scientific Symposium on October 17, 2022. The theme was “Healthy Pregnancies, Healthy Children, Healthy and Optimal Lives,” and the VideoCast, which includes remarks from Timothy Shriver, Ph.D. (son of Eunice Kennedy Shriver), is available online. The NICHD 60th anniversary webpage highlights key advances and milestones in NICHD’s history, the people who help NICHD achieve its mission, the institute’s future research directions, and anniversary activities and events.

NIH Budget and Congressional Briefings (10:30)

President Biden’s proposed fiscal year (FY) 2023 budget currently designates $62.5 billion for NIH and $1.68 billion for NICHD. NICHD’s Congressional Justification (PDF 1.33 MB) includes a fact sheet and selected program highlights, including several items of interest to NABMRR members. There is a continuing resolution through December 16, and challenges arise from late appropriations (e.g., funding announcement deadlines are shortened).

NICHD staff recently provided congressional briefings on the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) project, the Task Force on Research Specific to Pregnant Women and Lactating Women (PRGLAC), and maternal health.

NIH-Wide Initiatives with NICHD Involvement (17:12)

NICHD has ongoing efforts and upcoming research and funding opportunities in the following NIH programs:

• Implementing a Maternal health and PRegnancy Outcomes Vision for Everyone (IMPROVE) initiative: NOT-HD-22-022 describes plans to fund Maternal Health Centers of Excellence in FY 2023.
• Improving Reproductive Health Outcomes in Women with Disabilities (WWD) initiative: NOT-HD-21-025 describes ongoing funding opportunities to conduct research that could help reduce barriers on reproductive health, pregnancy, and parenting among WWD.
• 2020–2030 Strategic Plan for NIH Nutrition Research: NICHD staff are contributing to the Nutrition Across the Lifespan Implementation Working Group; Nutrition for Precision Health, powered by the All of Us Research Program; and the September 2022 5-day workshop, “Malnutrition in Clinical Settings: Research Gaps and Opportunities ,” which is now available on demand.
• Climate Change and Health (CCH) Initiative: NICHD staff are helping to develop a CCH strategy, re-energize the CCH Working Group, and develop CCH’s strategic framework. NOT-ES-22-006 describes CCH funding and research opportunities, and NOT-ES-22-009 and NOT-ES22-010 describe funding opportunities for the development of innovative technologies for CCH research.

Firearm and Violence Research (26:42)

NICHD supports research on prevention of violence from firearms, community-based interventions to prevent violence, social and academic factors leading to risky behaviors in youth, settings conducive to gun safety education, and population studies that analyze trends in gun ownership and access. In 2020, NICHD awarded nearly $2.5 million to support research to improve understanding and prevention of firearm violence and mortality. Dr. Bianchi’s July 2022 NICHD Director’s blog post addressed this topic. PAR 22-115 and PAR 22-120 solicit research on community-level interventions for firearm and related violence injury and mortality prevention and establishment of a coordinating center to support such research.

COVID-19 Research (28:28)

The NIH RECOVER: Researching COVID to Enhance Recovery initiative , which is conducting longitudinal observational studies and sub-studies, has already enrolled 10,878 adults and will analyze more than 60 million electronic health records to understand symptoms and underlying causes of Long COVID. NICHD will help fund new clinical trials to evaluate treatments to improve symptoms related to Long COVID.

NIH and NICHD Staffing (30:50)

NIH

• When Francis Collins, M.D., Ph.D., stepped down as NIH director in December 2021, Deputy Director Larry Tabak, Ph.D., D.D.S., became acting director. He will continue performing the duties of the NIH director while the White House searches for the next NIH director. This presidential appointment requires Senate confirmation.
• Monica Bertagnolli, M.D., was appointed director of the National Cancer Institute (NCI). The NCI position is a political appointment that does not require Senate confirmation.
• Joni L. Rutter, Ph.D., was named director of the National Center for Advancing Translational Sciences (NCATS).
• Sara Van Driest, M.D., Ph.D., was named the first director of pediatrics for the All of Us Research Program.

NICHD

• NICHD has position openings for:
• Director, Office of Clinical Research (Division of Extramural Research)
• Deputy director, Division of Extramural Activities
• Extramural branch chiefs for the Fertility and Infertility Branch (FIB) and the Gynecologic Health and Disease Branch
• Scientific review and program officers and program analysts for the Child Development and Behavior Branch, FIB, and Obstetric and Pediatric Pharmacology and Therapeutics Branch
• Trainees and fellows for the Division of Intramural Research and Division of Population Health Research

Discussion (38:00)

NABMRR board members asked Dr. Bianchi questions about next steps after the congressional briefing with Senator Jerry Moran (R-KS) on the INCLUDE project and about interacting with members of Congress, requests for information from Congress, and congressional open houses. Dr. Bianchi said that NIH employees cannot lobby members of Congress but can support the lobbying efforts of individual researchers and advocacy groups. Board members also discussed NIH relationships with the Office of Science and Technology Policy and the impending retirement of Anthony S. Fauci, M.D., from the National Institute of Allergy and Infectious Diseases (NIAID).

NCMRR Director’s Report (53:12)

Theresa Cruz, Ph.D., Director, NCMRR

Dr. Cruz said that rehabilitation research is thriving at NIH. NCMRR staff members are involved in collaborative projects across NIH and the federal government. Dr. Cruz reported on NCMRR activities and provided updates on funded research projects and NIH’s overall rehabilitation research portfolio.

Staff Updates (55:12)

NCMRR staff have been very supportive to Dr. Cruz over the past few months. Sue Marden, Ph.D., has been detailed to the National Institute of Nursing Research. Joe Bonner, Ph.D., has been detailed to the National Institute of Neurological Disorders and Stroke (NINDS). Toyin Ajisafe, Ph.D., is now NICHD’s point of contact for Small Business Innovation Research (SBIR) and Small Business Technology Transfer (STTR) grants, which make up 10% of the NCMRR budget. Dr. Cruz noted that she is participating in the NIH Executive Leadership Program and that NIH is currently hiring program officers and scientific review officers.

Activities and Collaborations (59:11)

Dr. Cruz provided updates on two NCMRR and NICHD research funding opportunity announcements (FOAs):

• PAR 23-029: NCMRR Early Career Research Award (R03 Clinical Trial Optional): Reissued with a larger budget of $200,000 and a due date of March 28, 2023. This application requires the participation of persons with lived experiences.
• RFA-HD-22-017: Home- and Community-Based Physical Activity Interventions to Improve the Health of Wheelchair Users (R01 Clinical Trial Required): Awards will be made soon. This is the FOA that resulted from the Pathways to Prevention initiative’s “Can Physical Activity Improve the Health of Wheelchair Users?” workshop.

NCMRR participated in the following three prize competitions:

• Design by Biomedical Undergraduate Teams (DEBUT) Challenge
  NCMRR sponsored a $15,000 prize for the best rehabilitative and assistive technology for the functional and healthcare needs of people with physical disabilities. The NCMRR prize was awarded to a team from Cornell University for their design of Yoomi, an artificial intelligence (AI)–driven physical therapy platform that uses computer vision to provide patients with real-time feedback on their exercise form and provides healthcare providers with exercise data and insights to optimize treatment. It is a telemedicine app that interfaces with electronic health records. DEBUT is led by the National Institute of Biomedical Imaging and Bioengineering (NIBIB).
• STRIVE for Change: Drawing on Our Strengths Art Challenge
  NCMRR staff helped establish this STrategies to enRich Inclusion and achieVe Equity (STRIVE) Initiative challenge, which is aimed at artists ages 16 to 25. The STRIVE initiative aims to improve diversity, equity, inclusion, and accessibility in NICHD’s research and workforce.
• Neuromod Prize: Accelerating the Development of Targeted Neuromodulation Therapies
  NCMRR helped evaluate this NIH Common Fund competition. The Common Fund announced its eight Phase 1 winners, and four of the winning ideas include spinal cord stimulation technologies to help patients with bowel and bladder control.

NCMRR staff participated in several NIH-sponsored workshops and meetings, including:

• NINDS/NICHD Workshop on Cerebral Palsy
  • August 17–18, 2022
  • Provided a forum for researchers, clinicians, and people with or affected by cerebral palsy to share updates on research progress and new opportunities since the publication of the 10-year Strategic Plan for Cerebral Palsy Research
• Neurourology: Bridging Basic and Clinical Science to Understand Urologic Disease
  • August 22–23, 2022
  • Hosted by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
• Presentation by Claudine Humure on amputee resources in low- and middle-income countries
  • September 7, 2022
  • hosted by NCMRR and the Fogarty International Center
• Irreducible Subjects: Disability and Genomics in the Past, Present and Future
  • October 6–7, 2022
  • Virtual 2-day symposium sponsored by the National Human Genome Research Institute (NHGRI) and the University at Buffalo Center for Disability Studies during National Disability Employment Awareness Month

NCMRR staff recently met with representatives from the following stakeholder groups:

• Spina Bifida Association
• Focused Ultrasound Foundation
• National AI Institute (NAII), which is the preeminent organization for AI research, implementation, policy, and collaboration at the Department of Veterans Affairs (VA)
• Blueprint MedTech, which had a program event at Howard University

NCMRR staff also participated in at least eight virtual and in-person society meetings and conferences from July through December 2022.

NCMRR sponsored the following two Medical Rehabilitation Research Speaker Series since the last meeting:

• Assistive and Rehabilitation Technology on May 20, 2022
• Leveraging AI/Machine Learning on November 18, 2022

Science Advances (1:14:09)

The following five recent NIH-funded publications addressed rehabilitation medicine topics:

• A pilot randomized controlled trial of supervised, at-home, self-administered transcutaneous auricular vagus nerve stimulation (taVNS) to manage long COVID symptoms (PMID: 36002874)
  • Findings: Four weeks of at-home self-administered taVNS (two 1-hour sessions daily, delivered at suprathreshold intensities) was feasible and safe.
• Changes in alcohol use and mood during the COVID-19 pandemic among individuals with traumatic brain injury (TBI): A difference-in-difference study (PMID: 35390043)
  • Findings: Among persons living with TBI, those exposed to the pandemic had significant increases in average alcohol consumption. Pandemic-exposed Hispanics with TBI had large elevations in anxiety symptoms.
• Human papillomavirus vaccination rates in adolescents with cerebral palsy compared to the general population (PMID: 35275573)
  • Findings: Adolescents with cerebral palsy were three times less likely to start (p < 0.001) and two times less likely to be up to date (p = 0.004) with the human papillomavirus immunization series compared with age-matched peers.
• Aging with traumatic brain injury: Deleterious effects of injury chronicity are most pronounced in later life (PMID: 34082606)
  • Findings: Both older age and greater injury chronicity were related to greater disability, reduced functional independence, and less community participation. There was a significant age by chronicity interaction, indicating that the adverse effects of greater time post-injury were most pronounced among survivors who were age 75 or older.
• Robotic exoskeleton helps people walk
  • Findings: Researchers created a robotic leg exoskeleton that provides personalized walking assistance under real-world conditions. Robotic exoskeletons could assist people with mobility impairments or with physically demanding jobs.

NIH Advisory Committee to the Director (ACD) Presentation (1:19:54)

The ACD meeting on December 8–9 will include a presentation from the ACD Working Group on Diversity’s Disability Subgroup. Marie A. Bernard, M.D., the chief officer for scientific workforce diversity, will present the subgroup’s findings on December 9, 2022. The Disability Subgroup report that Dr. Bernard presents will likely contain recommendations for how to improve the inclusion of researchers with disabilities in the NIH community. Dr. Cruz encouraged board members to view the VideoCast of the presentation (starts at 2:09:30).

Rehabilitation Research Plan (1:21:15)

Dr. Cruz presented an analysis of the $828.2 million NIH extramural rehabilitation research portfolio from 2015 to 2021. The 1,994 extramural rehabilitation grants in 2019 continued the upward trend from previous FYs. Extramural rehabilitation funding realized a 40% increase since 2015, with research projects receiving 81% of the funding pie, followed by small business grants, other research-related projects, and research centers. NINDS, the National Institute on Aging, and the National Institute on Deafness and other Communication Disorders spend more on rehabilitation projects than NICHD does. Approximately 34% of the FY 2021 portfolio studies were clinical trials, which are expensive and require responsible stewardship of the science, the funding, and the participants. Half (50%) of the funded projects fell under the theme of research design and methodology, followed by almost a quarter (23%) under the translational science theme. Disruptive methods may be needed to improve community and family projects theme, which came in last at 1%. Although the FY 2021 rehabilitation portfolio spans the United States, Europe, Canada, Australia, South Africa, the Middle East, the Caribbean, and Central America, Johns Hopkins University received 51 awards totaling more than $37.5 million, the most funding given to an institution in FY 2021. The University of Pittsburgh received the most awards (52), for more than $21.2 million in support.

Discussion (1:31:30)

NABMRR members asked questions and provided input on funding student projects beyond supporting research prizes, diversifying funding across the extramural project themes, increasing the R03 budget for PAR 23-029, and educating others in the NIH community about ableism as a disruptive technique for diversifying project funding.

NABMRR Liaison to the NACHHD (1:47:43)

Jose Contreras-Vidal, Ph.D., Professor of Electrical and Computer Engineering, University of Houston

Dr. Contreras-Vidal reported that the National Advisory Child Health and Human Development (NACHHD) Council meets three times per year, in January, June, and September. As NABMRR’s liaison to NACHHD, Dr. Contreras-Vidal attends meetings in support of NABMRR research activities. He noted that a lot of planning goes into NACHHD meetings and described learning about the COVID-19 pandemic’s impact on women and minorities and on research, the concept and review processes, innovative and emerging technologies, the contributions and trajectories of other principal investigators, and hearing directly from participants. Serving on the council has helped Dr. Contreras-Vidal in his everyday research and teaching work. He thanked Dr. Nitkin and the rest of the NCMRR staff for mentoring him through the NACHHD meeting process.

STRIVE Action Plan Update (2:01:26)

Alison Cernich, Ph.D., Deputy Director, NICHD

STRIVE is NICHD’s internal diversity initiative. It works alongside other NIH diversity initiatives, such as UNITE. Part of the STRIVE mission is to develop three comprehensive action plans that outline strategies to hire, train, retain, and promote diverse talent within the NICHD (the diversity, equity, inclusion, and accessibility [DEIA] action plan); train and support the careers of diverse scientific talent in the extramural community (the scientific workforce diversity [SWD] action plan); and propose health disparities research priorities and identify approaches to mitigate key drivers of health disparities (the health disparities research [HDR] action plan).

Dr. Cernich provided an overview of the DEIA, SWD, and HDR action plans and highlighted committee recommendations for each. The plans are each specific to their topic area, correspond with the structure of the NICHD Strategic Plan, and integrate with larger NIH diversity activities. Next steps include presenting the STRIVE action plans throughout the NICHD community for awareness and feedback; determining how to operationalize the recommendations made in the action plans by analyzing costs, resources, and feasibility; integrating the recommendations into the NICHD strategic plan; and following up with a small focus group of intramural investigators to ensure better integration. STRIVE committee members accept input and feedback via email at nichd_strive@nih.gov.

Discussion (2:23:33)

NABMRR members asked about how to empower change and reduce barriers in SWD and HDR, how public health researchers can actively engage with biomedical researchers to improve intersectional HDR, and how to broaden engagement and facilitate better practices in clinical trials, particularly with researchers who are unaware of disparities in various communities. The group also discussed the progression of training scientists on how to speak about their work with an equity lens, providing infrastructure and training grants to enhance SWD, and restructuring the system to stop favoring people with generational wealth.

NABMRR Research Infrastructure Working Group (2:38:34)

Dawn M. Ehde, Ph.D., Professor of Rehabilitation Medicine, Nancy & Buster Alvord Endowed Professorship in Multiple Sclerosis Research, University of Washington
Stephanie C. DeLuca, Ph.D., Associate Professor, Director of Neuromotor Research Clinic, Fralin Biomedical Research Institute, Virginia Tech Carilion Research Institute

Drs. Ehde and DeLuca reported the activities and conclusions of the NABMRR Research Infrastructure Working Group, which was tasked with broadly reviewing current rehabilitation infrastructure support structure, assessing the current infrastructure needs for rehabilitation research in the rehabilitation community, and developing high-level strategic opportunities and considerations for NCMRR and NICHD on how to address infrastructure gaps in meeting those needs. The current Medical Rehabilitation Research Resource Network (MR3N), which is about halfway through its current 5-year funding cycle, consists of six Research Program Projects and Centers (P2C) grants that provide infrastructure and access to expertise, technologies, and resources to foster clinical and translational research in medical rehabilitation.

During its 7-month assessment timeline, working group members determined the following:

• Infrastructure support is important to the future of rehabilitation research, and NCMRR is the natural lead for infrastructure support at NIH.
• NCMRR should be mindful of other funded infrastructure resources so that NCMRR support is complementary and not duplicative.
• The training of rehabilitation researchers is essential for the growth of the field. The current P2C network is not a replacement for training programs. Any training aspects of future infrastructure sites should be considered with other programs, but this topic is beyond the scope of this working group.
• Multiple tailored programs may be needed rather than the broad calls for infrastructure previously used.
• Infrastructure should also be used to increase access to high-quality data, diversity in all aspects of research, and stakeholder engagement.
• Outcome metrics for the success of the next phase should focus on the impact of research rather than traditional metrics of academic success.
• Communication and collaboration across infrastructure sites add value to the program and create a sense of community.

The working group members proposed the following opportunities:

• Cross-disciplinary collaborations: Rehabilitation research is often siloed by discipline or disease. Infrastructure provides opportunities for team science, community building, and cross-disciplinary projects that are difficult to achieve in standard NIH grant mechanisms.
• High-quality and accessible research data: Infrastructure should aim to produce high-quality, impactful, and broadly accessible data.
• Impactful research: Research across the translational spectrum of science is an opportunity for direct impact, and the potential for impact—even in bench science—should be considered.
• Implementation science: Rigorous clinical research should consider the implementation of findings to fulfill the goal of improving clinical care.
• Flexible funding opportunities: Nimble funding is important to keep infrastructure supported and research dynamic and responsive to community needs.
• DEIA: Infrastructure can be used to increase diversity and the inclusion of individuals with lived experience, who are traditionally underrepresented in research, in all aspects of the research process.

Accepting the working group’s proposed solutions and opportunities would position NIH and NCMRR to provide rehabilitation infrastructure that is collaborative, impactful, innovative, and conducive to the growth of the field; ensure that provided products and services maintain value to stakeholders in medical rehabilitation; ensure that rehabilitation research infrastructure stays responsive to the community’s evolving needs; and help design future systems that provide researchers with tools and resources to advance the field and generate impactful outcomes.

Discussion (2:59:38)

NABMRR members asked questions and provided input on the following topics:

• The timeline for next steps and how the recommendations will be used by NIH
• The importance of implementation science, how findings are adopted into clinical settings through continuing medical education and training, and components of implementation grants
• Research populations, cross-disciplinary research, and interdisciplinary research
• The criteria for defining high-quality, impactful research for various types of studies (e.g., objective and measurable outcomes, whether the research generates additional studies, clinical translation, immediate impact, impact over a period of time, future directional changes, whether the research is generalizable)
• What a nimble funding landscape would look like and the timeline for changing current funding structures through pilots, grants, contracts, and cooperative agreements
• Interdisciplinary collaboration and interactions or partnerships with industry (e.g., collaborating with public health, population-level, and allied health researchers)
• The process of attracting and engaging more basic scientists and then matchmaking researchers with similar or synergistic interests, including researchers at different career levels
• The provision of mentoring opportunities
• The translation of discoveries and successful intervention studies into clinical information and clinical practice outside of the institution that made the discovery
• The commercialization of devices, products, and tools (e.g., regulatory issues, seeking capital)
• The limbo between bench testing and NIH funding and timeline restrictions when moving ideas from one stage to the next
• The inclusion of dissemination plans in the grant review process

Vote (3:54:45)

NABMRR members voted without dissent to accept the working group’s proposed solutions and opportunities.

Incorporating Stakeholder Engagement and the Lived Experience in Medical Research (4:00:00)

Jennifer French, M.B.A., Executive Director, Neurotech Network, North American Spinal Cord Injury Consortium (NASCIC)

In this presentation, Ms. French described the current state of medical rehabilitation for spinal cord injury (SCI) using real-world examples. She showed how research can make an impact in improving the lives of people living with SCI by putting the technologies within reach of patients, evaluating the economic impacts of shortening rehabilitation time, and conducting outcomes studies.

Peer support interventions are incredibly valuable, and they should be used in the United States as a framework for physical medicine and rehabilitation studies. According to a recent paper by Magasi and Papadimitriou (PMID: 33440133), peer support interventions “describe a range of ancillary services provided by people with disabilities to people with disabilities, including peer mentoring, peer health education, and peer health navigation.”

NASCIC is a membership-based North American nonprofit organization that works to identify gaps, communicate resources, and serve as a conduit for collaboration between the community of people living with SCI and its many stakeholders. Its mission is to bring about unified achievements in research, care, cure, and policy by supporting collaborative efforts across the SCI community. People living with SCI want to be involved in designing research projects but feel left out of the research process until researchers are looking for clinical trial participants.

NASCIC supports a wide range of community engagement projects. When people with lived experience and researchers do not speak a common language, collaboration is more challenging. To solve this communication gap, NASCIC developed a free, online SCI research advocacy course for community engagement. The group also advocates for the use of patient-centered collaboration frameworks (e.g., the Patient-Centered Outcomes Research Institute, FasterCures).

Discussion (4:28:24)

NABMRR members thanked Ms. French for her valuable insights and asked questions about factors behind the shortened time allowed for medical rehabilitation after SCI, models of participant engagement that incorporate lived experience early in the experimental design process, and when to pursue stakeholder engagement in the research design process. Other members were interested in learning more about the sustainability and further growth of NASCIC’s SCI research advocacy course and about how researchers should share their findings with the SCI community.

Virtual Reality for Navigating through Different Neurological Conditions (4:41:09)

Abiodun Akinwuntan, Ph.D., M.P.H., M.B.A., FASAHP, FACRM, FAMedS, Dean and Professor, School of Health Professions, University of Kansas Medical Center

Dr. Akinwuntan said that neurocognitive-behavioral circuits for driving can be used to study executive function (decision making and planning), and he has been studying these circuits since 1999, when he was interested in determining whether patients could drive after suffering from a stroke. After determining that cognitive and visual abilities were the key components for driving, learning about Thorndike’s identical elements theory, and visiting the European New Car Assessment Programme in Belgium, he began developing driving simulation software for fitness to drive and rehabilitation for driving after stroke and with many other neurological diseases and conditions.

Dr. Akinwuntan and his team conducted the flagship randomized controlled trial on the effects of simulator training versus cognitive training in the early 2000s in Europe. The simulator training was done in a real car in front of a video screen. Importantly, the participants in the simulator training group retained the positive benefits of the training over time, whereas the participants in the cognitive group showed a decline in performance at the end of each follow-up period, despite both groups improving immediately after training.

Similar studies in participants with other conditions (e.g., multiple sclerosis, Parkinson’s disease) led Dr. Akinwuntan and his team to develop neural correlates of driving for brain areas activated during driving, for brain activation patterns based on the type of driving task, and for shifts from posterior to anterior patterns based on the complexity of the driving task. More recent imaging evidence has confirmed these findings, and other studies showed that the addition of auditory stimuli changed the brain activation patterns. These additional studies led to the discovery that the prefrontal cortex is associated with dual tasking, attention, memory, thought processing, and complex decision making (executive function).

Dr. Akinwuntan and his team further used the driving simulator to investigate driving performance after concussion, pupillary responses to cognitive challenges, and more. Their future work will determine whether virtual reality (VR) driving simulator training and advanced imaging techniques can be used for more new types of neurorehabilitation after making the tools accessible to more patients through the development and dissemination of portable and affordable driving simulators. Initial portable simulator designs are currently being improved by the therapists using them in the field (e.g., tripling the width of the video screen, improving user friendliness) and are being further developed for telehealth applications.

Discussion (5:12:24)

NABMRR members asked Dr. Akinwuntan questions about testing a simulation of driving while participants are distracted by conversations or mobile telephones, whether the simulation system could improve driving in patients with visual deficits (e.g., glaucoma, macular generation, low vision conditions), and correlations between the level of driving improvement and the severity of a neurocognitive disease or condition.

Nominations for Chair (5:20:17)

NABMRR members nominated the following three candidates for the board chair position, which will need to be filled in May 2023, when Dr. Perreault rotates off the board:

• Barbara Bregman, PT, Ph.D., is a professor emeritus from Georgetown University Medical Center’s Department of Neuroscience
• Dawn Ehde, Ph.D., is a professor of rehabilitation medicine in the Division of Clinical and Neuropsychology at the University of Washington
• Robert Sainburg, Ph.D., OTR/L, is a professor of kinesiology and neurology at Penn State University and Penn State College of Medicine and director of the Center for Movement Science and Technology in the Huck Institutes of the Life Sciences

The three names were put in nomination, to be followed by a vote on the second day of the meeting.

Adjournment (5:27:35)

Dr. Perreault adjourned Day 1 of the meeting.

Day 2: December 6, 2022

Time stamps (in parentheses) direct readers to each section of the VideoCast recording for Day 2 of the December 2022 NABMRR meeting.

Welcome (0:04)

Dr. Nitkin welcomed attendees and reviewed housekeeping items. The Day 2 agenda included presentations on the following: strategic planning and connections between NCMRR and the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR); NIH policy updates; Global Health and World Disability Day;  and on telerehabilitation; and the election of the new board chair.

Strategic Planning and Connections Between NCMRR and NIDILRR (0:45)

Anjali Forber-Pratt, Ph.D., Director, NIDILRR

After providing background on her identity and career path, Dr. Forber-Pratt described NIDILRR’s mission, evolution, and statutory and regulatory infrastructure. The work of NIDILRR, which is administered by the Administration for Community Living (not NIH), is needed because studies show that people with disabilities (PWD) are significantly more likely than individuals without disabilities to face barriers in terms of access to employment and other forms of community participation, experience chronic conditions, and experience health disparities attributable to poor access to care.

With its annual budget of $118 million, NIDILRR sponsors research on interventions and products to improve long-term outcomes and community living, provides capacity building and training for young investigators and retrains clinicians to pursue research careers, and assists in knowledge translation by promoting the use of research findings by PWD, their families, and other stakeholders. These efforts affect populations across the lifespan with all types of disability to improve health and function, employment, and community living. NIDILRR funds a large network of six knowledge translation centers and nine different types of grant mechanisms. Dr. Forber-Pratt described several examples of NIDILRR-funded projects and its funding priorities and noted that most of the funded projects are field-initiated.

Congress mandates NIDILRR to provide a 5-year roadmap that outlines the institute’s guiding principles, priorities, and focus areas. It is critical for this roadmap to include PWD in every step, reflect the voices of all stakeholders, and meet many potential emphasis points. For strategic collaboration, NCMRR and NIDILRR could co-sponsor events, workshops, and presentations; co-fund grants; and collaborate on the development of priority grant ideas.

There are many more resources for learning about and engaging with NIDILRR (view the slides). Importantly, the National Rehabilitation Information Center maintains a large, searchable database of research projects, disability resources, publications, knowledge, articles, books, and reports.

Discussion (38:56)

For the discussion, Dr. Forber-Pratt asked NABMRR members to provide input on the gaps that exist in the broader disability and rehabilitation funding portfolios that would affect or advance the field of disability and rehabilitation research. NABMRR members asked questions about differences between projects that are primarily funded by NIH versus NIDILRR, funding mechanisms that provide research opportunities for junior faculty, and ways to foster impact within the rehabilitation community by disseminating research from the laboratory to the bedside. Others asked questions about collaboration between NIDILRR and NIH’s SBIR program, entrepreneurship training programs or opportunities that exist for PWD, the research development pathways or trajectories from idea to implementation to long-term impact, and access to resources at NIDILRR’s knowledge translation centers.

Election of Chair (56:30)

Dr. Nitkin asked each of the three NABMRR members who were nominated for the board chair position to provide some final comments on their interest in leading the group in anticipation of a scheduled vote later in the afternoon.

NIH Policy Updates (1:05:08)

Rebekah Rasooly, Ph.D., Associate Director, Division of Extramural Activities (DEA), NICHD

Dr. Rasooly presented updates on the reorganization of NICHD’s extramural program and Special Council Review process, NIH’s Data Management and Sharing Policy, creation of a nimble initiative process, development of a strategic plan for training, and ways to build new capability to use flexible funding mechanisms.

Reorganization of the Extramural Program

Within NICHD, NCMRR is part of a parallel structure that includes the Division of Intramural Research and the Division of Extramural Research (DER). DER currently includes all the scientific, programmatic activities and personnel as well as all the personnel for business-related, review, and policy activities. Dr. Rasooly currently manages many direct reports and a high level of assets. Career development opportunities are needed for all extramural staff, and programmatic and policy activities must be coordinated. Because NICHD needs the ability to provide backup to programs when large, unexpected events occur or emergencies happen, DER is being reorganized into DER and DEA. This new division will have three major components: a Grants Management Branch, a Scientific Review Branch, and an Office of Extramural Policy. Rohan Hazra, M.D., will continue to serve as the director of DER. Dr. Rasooly will become director of DEA. This reorganization is nearing completion, and final approvals are expected soon.

Special Council Review

Special Council Review, a process that began in 2012, mandated the NACHHD to review funding applications from program directors and principal investigators who have already received large amounts of money from NICHD. In 2022, the threshold was raised from $1 million in direct costs to $2 million in total costs. Special Council Review only applies to research project grants; resource awards (e.g., Centers, Cores) and training awards (e.g., T32s) are excluded. Special Council Review should be re-examined, because analyses show that the top 10% of investigators (in terms of funding) are still more male, more White, and less Hispanic than average and receive approximately 40% of all NIH funding (PMID: 34477108). Several solutions have been proposed to reduce this concentration of funding (e.g., lower the monetary threshold for Special Council Review, lower the pay line, require a higher effort level, close eligibility loopholes). The NACHHD will continue to work on this process to allow a larger group of investigators to move forward with innovative ideas.

Data Sharing

NIH’s new Data Management and Sharing Policy goes into effect on January 25, 2023, for all NIH-supported research that generates scientific data. Scientific data are defined as recorded factual material commonly accepted in the scientific community as of sufficient quality to validate and replicate research findings, regardless of whether the data are used to support scholarly publications. The new policy requires researchers to submit a data management and sharing plan that describes how they will maximize data sharing and share data in established repositories at the time of publication or at the end of the performance period, whichever comes first. Data management and sharing plans will not be peer-reviewed. The NICHD Office of Data Science and Sharing will be providing on its webpage examples of data sharing and management plans, helpful tips for writing plans, and a tool for choosing an appropriate data repository. NICHD will monitor compliance with this policy.

Creating a Nimble Initiative Process

NICHD has developed a concept for an approach to speed the development of its initiatives. The proposed concept would allow NICHD to respond to new challenges and opportunities more nimbly and allow the institute to issue new funding opportunities more rapidly. This process is ongoing.

Developing a Strategic Plan for Training

A working group to study the NICHD extramural training program has been launched. Dr. Cruz will co-chair this group.

Building New Capability to Use Flexible Funding Mechanisms

NICHD is building capacity to use flexible funding mechanisms, including Other Transactional Authority, to provide the flexibility necessary to adopt and incorporate business practices that reflect commercial industry standards and best practices into agency award instruments.
Dr. Rasooly concluded by saying that NICHD will be reviewing many of its standard practices to identify further areas for improvement (e.g., oversight of clinical research).

Discussion (1:27:15)

NABMRR members asked questions and offered comments about restructuring the extramural training program, closing eligibility loopholes as part of the Special Council Review process, matchmaking investigators for grant application purposes, and data sharing and management plans. The group was also interested in learning about pilot funding programs and whether NICHD was collecting data on the effects of the pandemic on underrepresented researchers, including postdoctoral researchers.

Global Health and World Disability Day (1:39:53)

Walter R. Frontera, M.D., Ph.D., FRCP, Professor of Physical Medicine, Rehabilitation, and Sports Medicine Physiology, University of Puerto Rico School of Medicine

The World Health Organization (WHO) is advocating for medical rehabilitation, because evidence shows that 1.3 billion people globally (1 in 6 people) have significant disability. WHO’s Global Report on Health Equity for Persons with Disabilities was released on December 2, 2022. Furthermore, 2.4 billion people in the world have health conditions that would benefit from rehabilitation. In 2023, WHO plans to announce that rehabilitation services should be strengthened in health systems.

According to their website, the WHO Rehabilitation 2030 initiative “draws attention to the profound unmet need for rehabilitation worldwide and highlights the importance of strengthening health systems to provide rehabilitation. The initiative marks a new strategic approach for the global rehabilitation community by emphasizing that (1) rehabilitation should be available for all the population and through all stages of the life course, (2) efforts to strengthen rehabilitation should be directed toward supporting the health system as a whole and integrating rehabilitation into all levels of healthcare, and (3) rehabilitation is an essential health service and crucial for achieving universal health coverage. With aging populations and an increase in the number of people living with chronic disease, rehabilitation is a priority health strategy for the 21st century that uniquely contributes to optimizing the functioning of the population.”

The Rehabilitation 2030 initiative has issued an ambitious call for action for concerted and coordinated global action to scale up rehabilitation. The following are its 10 priority areas:

• Create strong leadership and political support for rehabilitation at sub-national, national, and global levels.
• Strengthen rehabilitation planning and implementation at national and sub-national levels, including within emergency preparedness and response.
• Improve integration of rehabilitation into the health sector and strengthen intersectoral links to meet population needs effectively and efficiently.
• Incorporate rehabilitation into universal health coverage.
• Build comprehensive rehabilitation service delivery models to progressively achieve equitable access to quality services, including assistive products, for all the population, including those in rural and remote areas.
• Develop a strong multidisciplinary rehabilitation workforce that is suitable for country context and promote rehabilitation concepts across all health workforce education.
• Expand financing for rehabilitation through appropriate mechanisms.
• Collect information relevant to rehabilitation to enhance health information systems, including system-level rehabilitation data and information on functioning, using the International Classification of Functioning, Disability and Health (ICF).
• Build research capacity and expand the availability of robust evidence for rehabilitation.
• Establish and strengthen networks and partnerships in rehabilitation, particularly between low-, middle-, and high-income countries.

To achieve these goals, WHO has developed several resources, guides, and frameworks, which are available on the initiative’s website. The World Rehabilitation Alliance (WRA) is a WHO global network of stakeholders whose mission is to support the implementation of the Rehabilitation 2030 initiative through advocacy activities. The WRA focuses on promoting rehabilitation as an essential health service that is integral to universal health coverage.

Evidence-based advocacy efforts and WRA participation are needed to increase awareness and a sense of belonging in the global rehabilitation community through interactions with local, national, regional, and international organizations working toward a common goal. Most international organizations can qualify to become members of the WRA and join the effort, which is divided into five workstreams. Membership is free.

Health policy and systems research seeks to understand and improve how societies organize themselves in achieving collective health goals and how different actors interact in the policy and implementation processes to contribute to policy outcomes. Other evidence that focuses on models of care, clinical practice guidelines, and global burden of disease data is useful to inform health policy decision making. This type of research complements but does not replace other types of rehabilitation evidence, but it suffers from a lack of funding, limited capacity among researchers, and limited demand and capacity to use its findings for rehabilitation planning in the health sector. If health policy and systems research evidence is not gathered, rehabilitation will continue to be excluded in policy and planning for health services in the health sector and there will continue to be a mismatch between the need for rehabilitation and the availability of rehabilitation services.

For appropriate monitoring and planning for rehabilitation in the health sector, decision makers are required to ask for and use best available evidence. Generation of evidence to support availability of rehabilitation in health systems requires researchers, infrastructure and institutional support, funding, partnerships, and metrics. Health policy and systems research evidence needs to be relevant and timely.

NCMRR has two research program areas that overlap with WRA goals, so opportunities exist for collaboration in areas of mutual interest, international research projects, and funding priorities that are compatible with policy questions.

Discussion (2:08:44)

NABMRR members asked questions and offered comments about research opportunities for primary care involvement in rehabilitation, data collection on rural health access to rehabilitation services, and the lack of workforce for rehabilitation in many countries. Others commented that the information was helpful for understanding the global rehabilitation landscape and asked for additional information on the types of interventions that can be used for global for research. Dr. Cruz provided additional context for the intersections between WRA and NCMRR.

Election of Chair (2:24:10)

Dr. Nitkin led the board members through the process of electing a new board chair. Through a private electronic vote, Dr. Barbara Bregman received the most votes and was elected as incoming board chair to start at the conclusion of the May 2023 meeting.

Telerehabilitation: Respecting Time and Place (2:27:05)

Jereme D. Wilroy, Ph.D., Assistant Professor, Department of Physical Medicine & Rehabilitation, University of Alabama at Birmingham (UAB), and Project Co-Director, UAB Spinal Cord Injury Model System

After providing background information on his personal journey with SCI rehabilitation, his family, and his state-of-the-art telemedicine clinic, Dr. Wilroy said that “The fitter an individual is, the easier it is to manage their life” has become the statement that fuels his work, because PWD encounter physical challenges every day.
Telerehabilitation is the remote delivery of rehabilitation services using information and communication technology (ICT). ICT includes wearables, videoconferencing, phones, text messaging, and mobile and Web-based software. Frameworks for technology use (PMID: 27267858) outline the steps needed for providing access, increasing usability, and promoting adherence while improving physiological and psychological health.

Various techniques can be used to understand patient needs. The grounded theory model can help understand enrollment in clinical trials. Decision support tools can help define patient preferences for telerehabilitation, and some of them have adaptive designs with menus for each intervention strategy. Adherence can be correlated to a tailored approach to interventions.

Telerehabilitation can be linked with health promotion, and telehealth programs can facilitate health-enhancing behaviors for exercise, improved nutrition, and mindfulness. Mobile apps can provide both online and offline capabilities. Immersive VR is available, along with videoconferencing for coaching and live training. Wearables can be used for remote monitoring.

The benefits of telerehabilitation include increased delivery of services, extension of services into communities and homes, enhanced engagement, and convenient and affordable delivery. Technology is also in a state of exponential growth. The current state of telerehabilitation, however, also has several challenges. First, it is important to remember that telerehabilitation is a tool, not a replacement, for rehabilitation. Patients have lower long-term adherence with telerehabilitation. The connection with therapists is less personal and not hands-on, and many patients have usability and connectivity issues with technology. Finally, there can be privacy concerns.

The future of telerehabilitation will include collecting big, meaningful data; redefining home healthcare; cracking the code of sustainability; building infrastructure to increase access and delivery; and including disability when further developing technology. Participants often provide positive feedback about the value and connection that has come from joining telerehabilitation programs.

Discussion (2:54:02)

For the discussion, Dr. Wilroy asked the group to consider the following questions: How do we increase access and availability of telerehabilitation to ensure equity? What data are needed to lobby for healthcare reimbursement? What technology needs to be developed or improved upon? Why should telerehabilitation be a priority? NABMRR members asked questions about the size of telerehabilitation programs that UAB has implemented, how they use their telerehabilitation data, and how to include participants with communication challenges (e.g., hearing or visual impairment) or emotional issues. Others asked questions about using remote therapeutic monitoring billing codes, the positive and any negative consequences doing so, and making connections between telerehabilitation programs and exercise, diet, and nutrition promotion.

Planning for the Next Meeting (3:01:16)

Dr. Perreault asked NABMRR members to suggest topics to address at future meetings. Board members suggested the following topics:

• Supporting rehabilitation research for primary healthcare and rural settings
• Providing evidence to improve insurance coverage for long-term rehabilitation
• Hearing from rehabilitation colleagues at other government agencies with a focus on the other agency’s funding programs
• Managing participant sustainability of interventions after the completion of a study
• Understanding biological and functional outcome measures of mechanistic studies
• Translating knowledge to the clinic
• Packaging interventions and evidence of their use in diverse settings

Adjournment (3:06:57)

Dr. Nitkin thanked the speakers, board members, and public listeners for attending the meeting and participating in the lively discussions. He encouraged attendees to contact him with any questions or suggestions. Dr. Cruz added her appreciation, especially for board member input, which she takes quite seriously. Dr. Perreault adjourned the meeting.