Summary Minutes – May 1-2, 2023

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)

Virtual/In-Person Hybrid Meeting Format

 

Board Members Present:

Abiodun Akinwuntan
Barbara S. Bregman
Jose Luis Contreras-Vidal (virtual)
Stephanie C. DeLuca
Dawn M. Ehde (virtual; Day 1 only)
Flora Hammond (virtual; Day 2 only)
Michelle J. Johnson
Steven J. Keteyian
Eric Jon Perreault, Chair

Michael Wade Shrader
Robert L. Sainburg
Michael Wade Shrader
Kris Tjaden
Francisco Valero-Cuevas (virtual)
Lewis A. Wheaton (virtual)
Kathleen M. Zackowski (virtual; Day 1 only)

Board Members Absent:

Patricia R. Babin
Cheri A. Blauwet

Ex-Officio Members Present:

Diana W. Bianchi, NICHD (Day 2 only)
Daofen Chen, NINDS
Theresa Cruz, NCMRR
Robert Eisinger, DPCPSI (virtual)
Anjali Forber-Pratt, NIDILRR (virtual)
Lyndon Joseph, NIA

Ralph Nitkin, NCMRR
Lana Shekim, NIDCD (virtual)
Carl Soffler, DoD
Edward Vitelli, ED (virtual; Day 2 only)

Ex-Officio Members Absent:

Patricia Dorn, VA
Jerome L. Fleg, NHLBI

Chuck Washabaugh, NIAMS

Day 1: May 1, 2023

The VideoCast recording of the first day of the May 2023 NABMRR meeting is available online. Time stamps (in parentheses) direct readers to each related section of the meeting recording.

Welcome, Approval of Minutes, and Future Meetings (0:04)

NCMRR Deputy Director and NABMRR Executive Secretary Ralph Nitkin, Ph.D., opened the meeting at 9 a.m. Eric J. Perreault, Ph.D., welcomed the participants and called the roll. He introduced three new board members: Steven J. Keteyian, Ph.D., M.A.; Kris Tjaden, Ph.D., M.A.; and Patricia R. Babin, Ph.D. The board voted to approve the minutes of the December 5–6, 2022, meeting as written. Future meeting dates are as follows:

  • December 4–5, 2023
  • May 6–7, 2024
  • December 2–3, 2024

NCMRR Director’s Report (09:53)

Theresa H. Cruz, Ph.D., Director, NCMRR

Dr. Cruz welcomed the board to the first in-person meeting since December 2019 and encouraged participants to provide feedback on the hybrid approach and other logistics to inform future meetings. She called for a moment of silence to acknowledge two recent deaths: that of Eli Wolf, Paralympian and husband of board member Cheri A. Blauwet, M.D.; and that of Judith Heumann, an activist known as the mother of the disability rights movement, who was a member of the first advisory board in 1991.

Staff Updates (13:35)

Joe Bonner, Ph.D., is completing his detail assignment to the National Institute of Neurological Disorders and Stroke (NINDS) this week. Toyin Ajisafe, Ph.D., has been selected to participate in the NIH leadership training program. A new staff member will join NCMRR next week. Dr. Cruz noted that NIH and NICHD have openings for program officers and scientific review officers.

Activities (15:19)

Dr. Cruz presented information about several new notices of funding opportunities (NOFOs):

  • PAR-23-029: NCMRR Early Career Research R03 (R03 Clinical Trial Optional)
    Applications for this reissued opportunity are due annually in March. For the first time, this award requires applicants to describe the inclusion of people with lived experience, largely in response to feedback from NABMRR and others.
  • RFA-OD-23-013: Understanding Chronic Conditions Understudied Among Women (R01 and R21 Clinical Trial Optional)
  • NOT-HD-23-006: Notice of Special Interest (NOSI): Climate Change and Health Administrative Supplements
  • PAR-23-037: Multisite Clinical Research: Leveraging Network Infrastructure to Advance Research for Women, Children, Pregnant and Lactating Individuals, and Persons with Disabilities (U01 Clinical Trial Optional)
  • NOT-HD-23-001: NOSI: Mortality of Adolescents, Young Adults, and Other NICHD Priority Populations in the United States

NCMRR staff members have traveled to participate in a number of professional meetings. Dr. Cruz welcomed suggestions for other meetings or conferences for NCMRR staff to consider attending.

As part of an executive leadership program, Dr. Cruz joined a group that visited Capitol Hill and met with staff members from both houses of Congress and both parties, including representatives of the authorization and appropriations committees from both houses. The group also met virtually with Rep. Debbie Dingell (D-MI), a strong NIH advocate.

Collaborations (19:45)

As part of the Design by Undergraduate Biomedical Teams (DEBUT) Challenge, led by the National Institute of Biomedical Imaging and Bioengineering (NIBIB), NCMRR offers a $15,000 prize for the best rehabilitative or assistive technology to meet the needs of people with disabilities. Nearly a third of the applications to last year’s DEBUT challenge were eligible for the NCMRR prize. Dr. Cruz urged board members to let their students know about DEBUT.

The advisory board to the National Institute for Minority Health and Health Disparities (NIMHD) approved the concept of a NOFO that addresses the intersection of disability with other disparities, a topic that reflects previous NABMRR discussions. A NOFO that targets health disparities among people with disabilities is in development.

In March 2023, NIH’s Intramural Research Program held a workshop on inclusive participation in clinical research

The National Science Foundation’s (NSF’s) Disability and Rehabilitation Engineering (DARE) group held a conference on computational modeling and neurological rehabilitation external link, which is among several NSF efforts to promote research on people with disabilities and rehabilitation.

NICHD hosted the Ableism in Medicine and Clinical Research workshop in April 2023.

The Centers for Disease Control and Prevention (CDC) is adding questions about the birth experiences of pregnant people with disabilities to its Pregnancy Risk Assessment and Monitoring Survey. Within a few months, all states will begin collecting that data. NCMRR supports a fellow at CDC who already has some findings to present from the collaboration.

The Food and Drug Administration (FDA) announced RFA-FD-23-030, Systematic Review of Clinical Outcome Assessments for Communication Brain-Computer Interface Devices in Amyotrophic Lateral Sclerosis.

The Department of Commerce hosted a conference to assess the state of the art of brain-computer interfaces external link. Most of the conference speakers agreed that international collaboration is still needed to advance the field, and federal protections around intellectual property are not yet necessary.

The brain-computer interface was also the subject of a feature by CBS News’ 60 Minutes, which highlighted work pioneered by a former NCMRR trainee (read the segment transcript at https://www.cbsnews.com/news/advancements-in-prosthetics-limb-technology-allow-feeling-control-60-minutes-transcript-2023-03-26/ external link). Dr. Cruz said the story was a good example of positive media coverage of rehabilitation.

Science Advances (27:42)

A group of NIH-funded researchers found that high-intensity walking intervals are better than moderate walking for stroke rehabilitation (PMID: 36822187). Another study demonstrated great improvement with spinal cord stimulation in two subjects with upper limb paresis following stroke (PMID: 36807682), which gained attention in the popular press. For example, National Public Radio’s All Things Considered interviewed NINDS Director Walter Koroshetz, M.D., about the findings external link. NIH’s premiere lecture series featured former NABMRR member Rory Cooper, Ph.D., who spoke about including people with disabilities in technology research and development.

The NIH-Wide Strategic Plan on Diversity, Equity, Inclusion, and Accessibility (DEIA) includes a sidebar featuring NCMRR’s work. Dr. Cruz thanked Dr. Ajisafe and Reon Holloway, who represented NICHD on the group that developed the strategy.

Upcoming Events (30:41)

As part of the Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative, NIH is hosting a brain behavior quantification synchronization workshop on sensor technologies to capture the complexity of behavior on May 2–3, 2023. Other NIH institutes and centers (ICs) are leading work on pediatric medical devices, with input from NCMRR. For example, the National Eye Institute (NEI) about collaborating on a strategic plan for cortical visual impairment research. Also, in concert with the National Cancer Institute (NCI), an NCMRR fellow is looking at gaps in NCI’s portfolio around rehabilitation and will present findings at an upcoming American Congress of Rehabilitation Medicine meeting.

The NIH Advisory Committee to the Director (ACD) submitted a report to the director with recommendations on people with disabilities. The Office of the Director is now organizing a team and structure to address the recommendations. Dr. Cruz anticipated having more details about upcoming events to share with the NABMRR at its December 2023 meeting.

Discussion (34:03)

Dr. Cruz explained that NICHD, NIBIB, other federal and nonfederal partners are addressing pediatric medical devices. The FDA, for example, is building on the work of a pediatric device consortium. Rehabilitation devices are a subset of the topic, and NCMRR is providing input.

During the visit to Capitol Hill, Dr. Cruz and her colleagues heard staffers’ concerns about the budget and debt ceiling. Staffers recommended that NIH do a better job explaining to Congress and the public what it does and why it is important enough to fund. Dr. Cruz asked board members to let her know if NIH-funded work is mentioned in their local press. Dr. Nitkin emphasized the importance of crediting NIH support whenever applicable so that taxpayers can see how their dollars contribute to important biomedical advances.

NCMRR Portfolio Analysis (38:52)

Alicia Ross, M.P.A., Program Analyst

Ms. Ross presented an analysis of the NCMRR portfolio from 2018 through 2022. The number of new applications has increased since 2018. The types of awards and dollars vary each year based on budgets and previous commitments. The geographic distribution of awards is comparable to NIH-wide distribution. Career development and training awards went from 10% of the NCMRR grant budget in 2021 to 7% in 2022, reflecting the end of K12 awards and a decrease in funding.

Since 2018, NCMRR has funded around 20% of the applications for awards from early-stage investigators (ESIs). Ms. Ross pointed out that NCMRR receives a low number of ESI applications and that the funding rate is consistent with that of established investigators. Looking at all new R01 awards year by year since 2018, Ms. Ross pointed out that success rates vary according to the available funds and number of applications submitted. For ESIs applying for R01s from NCMRR, the success rate ranged from 15% to 24% in the 5-year time frame assessed. Although success rates for ESIs vary by IC, the average rate across NIH is 22%.

The number of applications received has grown steadily since 2018, with no substantial change related to the peak of the COVID-19 pandemic. However, in 2020, NCMRR granted 13 mid-project extensions, a 46% increase over the previous year (that number returned to normal in 2021). In response to the pandemic, NCMRR provided more than $160,000 to allow fellows and career development trainees more time to transition into positions, which was made possible when NIH was granted more flexibility in spending. The increased flexibility also allowed NIH to extend the eligibility requirements for ESIs and others seeking career development awards, offer no-cost extensions, and provide administrative supplements. Ms. Ross concluded that NCMRR is growing and supporting research around the nation. The broader effects of the pandemic on NCMRR-sponsored research remain uncertain, but the center did not see a large influx of applications during the peak of the pandemic.

Discussion (50:50)

Dr. Cruz explained that the success rate differs from the funding pay line. NCMRR funds applications with a wider range of scores than other NICHD partners. Dr. Cruz would like to see more higher-scoring applications, which would support the case for increased funding. Dr. Nitkin added that the analysis reflects only NCMRR grants; rehabilitation research across the NIH is growing and is funded by numerous ICs. Dr. Cruz agreed to provide an analysis of rehabilitation research funding across NIH. She and Dr. Nitkin emphasized that collaboration is key, particularly for supporting projects beyond NCMRR’s funding capacity. Dr. Cruz said NIH spends more than $900 million on rehabilitation, of which NCMRR accounts for about $85 million.

Discussion revolved around the difficulty of ensuring that rehabilitation research proposals are routed to the appropriate review panels and that those panels have sufficient expertise to assess such proposals. It was noted that the nature of rehabilitation research (e.g., direct intervention) contrasts with the basic and explanatory research that NIH typically funds.

Dr. Cruz described the difficulty of assessing the quality of rehabilitation research applications across NIH; the success rate is slightly skewed by the number of resubmissions, and unfunded grants are not always categorized. She also acknowledged that NCMRR could increase the diversity of its pool of researchers through diversity supplement funds. Dr. Nitkin added that NIH receives few requests for diversity supplements to support researchers with disabilities.

NCMRR Conferences

Ableism in Medicine and Clinical Research (1:09:36)

Theresa H. Cruz, Ph.D., Director, NCMRR

Stephanie C. DeLuca, Ph.D., Associate Professor, Director of Neuromotor Research Clinic, Fralin Biomedical Research Institute, Virginia Tech Carilion Research Institute

Dr. Cruz said NABMRR had proposed a workshop on ableism a year ago, in response to the concept of a NOFO on ableism. A planning committee with representation from several ICs developed the agenda. Among the planning committee and the workshop presenters were several people who disclosed that they had a disability, which contributed to the diversity of perspectives.

With special permission from the Office of Management and Budget, the planning committee gathered demographic data on the attendees to determine whether the workshop reached a diverse group. About half of the attendees were researchers. Most were White and female. Many indicated general interest in the topic, and some said they attended because they are involved in DEIA activities in the workplace. Among the non-NIH groups that attended were CDC, the Patient-Centered Outcomes Research Institute (PCORI), the Department of Veterans Affairs (VA), professional organizations, advocates, patient groups, and care partners. Dr. Cruz said the workshop reached the intended audiences, and attendance throughout both days was considerable.

Dr. DeLuca appreciated NICHD hosting the event. She noted that promoting diversity is a goal for many, but disability is often an afterthought. She said the content was broad, including presentations on defining ableism, understanding health care disparities, recruiting a more diverse pool of researchers, and improving research processes for addressing disability issues, to name a few features. She applauded the inclusion of the arts, which are often left out.

Disability affects everyone who lives long enough, Dr. DeLuca observed, so anyone can join the conversation. She anticipated that many research questions would arise from the workshop, and she hoped that future workshops would delve into those questions. She also hoped future workshops, conferences, and NOFOs would tackle the hard conversations about ableism, such as the difficulties of reporting on disability status.

Discussion (1:20:02)

Dr. Nitkin encouraged participants to share the archived video of the workshop with colleagues to raise awareness about ableism, particularly microaggressions. He emphasized that including people with disabilities is not only is a matter of social justice but also improves the validity and quality of research. A board member said that more investigators should be aware that they are required to include people with disabilities in studies at all levels and to account for the exclusion of people with disabilities.

Some discussion addressed the tension between ableism and rehabilitation to improve function. It is crucial to understand and respect an individual’s desires. Too many clinicians take a paternalistic approach or dismiss what is meaningful to the individual. The goal of rehabilitation is to maximize one’s abilities, function, and life experiences. It may be helpful to bring more representatives of state rehabilitation councils into the conversation about research that improves lives, increases independence, and enhances personal security. In response to a board member’s suggestion, Dr. Cruz agreed that NCMRR should reach out to the FDA, which is advancing efforts to include people with disabilities in research.

Dr. Cruz noted that NCMRR received a lot of positive feedback about the workshop. Some glitches did occur with the sign language translation, and participants posed far more questions than could be answered during the workshop. The evaluation survey will likely surface other valuable insights.

NSF DARE 2023 Conference (1:32:17)

Francisco Valero-Cuevas, Ph.D., Professor of Biomedical Engineering, Aerospace and Mechanical Engineering, Electrical and Computer Engineering, Computer Science, and Biokinesiology and Physical Therapy, University of Southern California

Dr. Valero-Cuevas summarized the conference held March 23–24, 2023, at the University of Southern California (USC) in cooperation with the University of Washington, supported by NSF with critical assistance from NICHD and NCMRR. Organizers worked to ensure that the conference brought forth a diverse range of perspectives and experience, sparked interest among people who might join the field, and encouraged contributions from unexpected areas of work. Each session was headed by two keynote speakers who then facilitated discussion about research opportunities.

Before the conference, organizers selected a cohort of NSF DARE fellows who are in the early stages of their careers to bring forth new perspectives. Together, the fellows will write a position paper that describes their work and its relevance to the themes raised during the conference. The paper will emphasize the potential broad impact of their work, with an eye toward the future. It will also discuss how to broaden participation in the field and catalyze engagement across the academic community, beyond research universities, to include minority-serving institutions and teaching institutions, for example.

The conference focused on the role of computational modeling in the context of neurorehabilitation. Among the specific topics of interest were the data needed to support modeling for future neurorehabilitation research and how computational modeling can contribute to understanding adaptation and plasticity. There was discussion about computational modeling for personalizing clinical treatment, exemplified by the Digital Twin project. Emerging technologies will eventually yield more interactive devices, and modeling offers an opportunity to anticipate and experiment with human–device interactions. With the availability of low-cost sensors and broad connectivity, more data from the field will be available for modeling, and those data will reflect real-world behavior of people in their everyday settings.

The number of participants was notably more than the organizers anticipated, demonstrating a lot of interest in the topic. The conference emphasized interaction and building new relationships, so participants had a lot of time to review and discuss the more than 100 posters presented. A website was created to serve as a forum and to encourage continued community interaction. A number of publications are anticipated in addition to the fellows’ observations, including perspectives on the key takeaways of the conference in the Journal of NeuroEngineering and Rehabilitation. A group of NSF and NIH program officers will also publish their views of the short-, medium-, and long-term goals for neurorehabilitation research.

Discussion (1:54:57)

Dr. Valero-Cuevas noted that the conference brought together people who do not often interact directly, and he hoped for more opportunities to nurture multidisciplinary collaboration. An annual conference might not be feasible, but it might be possible to organize workshops as part of current annual conferences. Dr. Valero-Cuevas hoped that the position papers to be published would offer some guidance on how to catalyze collaboration, and he welcomed more input on the matter.

A board member suggested future convenings carve out time to address ethical issues involving computational modeling. For example, modeling could lead to applications that forecast outcomes based on individual conditions, which could, in turn, motivate clinicians to funnel people into certain interventions rather than individualize treatment. Dr. Valero-Cuevas agreed, noting that researchers in the field have raised several ethical issues for discussion. Another topic to grapple with is how to manage data gathered from wearable sensors and at which point such sensors intrude on an individual’s private life.

In response to a board member, Dr. Valero-Cuevas said the conference revealed the need for more training on the utility, benefits, risks, and opportunities of computational modeling and how to apply it to rehabilitation. Pioneers raised numerous issues when the field was just starting, and it is time to revisit many questions now that the computational power is available to achieve the promise of modeling. Dr. Valero-Cuevas added that more input is needed from clinicians, caregivers, and people with disabilities about how technology would benefit them. Efforts can build on technological advances, such as smartphones and tablets, that have helped people with disabilities, even though the technology was not designed for that purpose. New technology allows people with disabilities to interface with computer systems in unanticipated ways. It is time to talk with clients about what they want, said Dr. Valero-Cuevas. A board member added that the conference was a good example of how NCMRR collaborates with federal partners.

Scientific Talk: Therapeutic Strategies to Maximize Development in Children with Neuromotor Disorders (2:07:50)

Stephanie C. DeLuca, Ph.D.

Dr. DeLuca described her work on pediatric constraint-induced movement therapy (CIMT), which involves intensive therapy sessions (about 3 hours each) over the course of 2–4 weeks. She was among the first to develop evidence-based protocols for pediatric rehabilitation. She treated her first pediatric subjects with CIMT in 1998, with good long-term results. Those early efforts soon led to development of two research-driven clinics. Dr. DeLuca has traveled around the world to provide training on CIMT, finding that even some low- and middle-income countries have health care models that support intensive therapy.

In the United States, pediatric CIMT is supported by data and highly recommended, but uptake is low for several reasons. Among the barriers to the intensive treatment approach is the perception that it is not practical nor cost-effective. Dr. DeLuca called for better training for therapists on using intensive rehabilitation models. Therapists also need mechanisms for evaluating client progress in the context of intensive therapy, as well as avenues for feedback to help them improve. The cost-effectiveness of intensive therapy should be assessed in the long term. Dr. DeLuca summarized current research on dosage and types of constraints. She proposed reconceptualizing the current models of rehabilitation therapy and conducting more implementation science to inform practice. Individualizing treatment protocols is an important component of therapy, particularly intensive therapy. Dr. DeLuca encouraged participants to take advantage of NCMRR’s funding for pilot programs involving pediatric populations.

Discussion (2:40:50)

Dr. DeLuca pointed out that the principles of intensive therapy are applied outside of rehabilitation; for example, youth sports recognize the benefits of intensive training. Research demonstrates that intensive therapy can be useful for a range of disabilities, including cognitive disabilities. Dr. DeLuca acknowledged the lack of reimbursement for intensive therapy, which she attributed to payers’ focus on short-term benefits and the lack of clinical research. She called for raising awareness of CIMT among neurologists and other clinicians, which can be facilitated with help from advocacy groups.

Several board members agreed that CIMT reflects principles of neuroplasticity, which could be better understood using computational modeling and brain imaging. Future workshops and NOFOs could address those topics.

Dr. DeLuca said her team is developing decision models to help therapists and parents maintain engagement of children in intensive therapy. She noted that training and peer feedback for therapists are very helpful. Dr. DeLuca hopes to pursue implementation science research to help disseminate models of pediatric CIMT in every state.

Scientific Talk: Balancing Mobility and Stability: Neuromuscular Control of Human Shoulder Mechanics (3:00:05)

Eric J. Perreault, Ph.D.

The Shirley Ryan AbilityLab external link houses research on physiological adaptations following injury or disease. Dr. Perreault incorporates his engineering training into neuromechanics research, which combines neuroscience, neurophysiology, and biomechanics. His team determined that the nervous system can regulate the stiffness of the limb, voluntarily and through rapid, reflexive response. Other research evaluated how humans leverage limb stiffness to simplify movement, and the results were used to improve the mechanics of artificial limbs.

The shoulder joint is the most commonly dislocated joint. By measuring 15 muscles that cross the shoulder joint, investigators in the AbilityLab categorized the muscles into four groups that account for 90% of variance. They found that for many tasks, groups of muscles worked together, contributing to stiffness in the joint, probably to maintain stability. The laboratory’s findings on joint rotation and posture could have implications for athletes or others likely to dislocate the shoulder. For example, more focus on strengthening prime-mover muscle groups for risky shoulder postures could help prevent injury.

Discussion (3:34:36)

Dr. Perreault indicated that the laboratory is also looking at the impacts of anatomical deformity and aging on joint stability. Additional discussion focused on technical questions and potential areas for research, such as studying elite athletes and considering the adaptation of the shoulder joint in the evolution of quadrupeds to bipeds.

NSF Support for Rehabilitation Research (3:49:37)

Steven Zehnder, Ph.D., Associate Program Director, NSF

Dr. Zehnder emphasized that NSF supports biological and medical research that advances knowledge in engineering or information science, for example, as well as bioengineering and assistive information technology research to aid people with disabilities. The Disability and Rehabilitation Engineering (DARE) program supports fundamental research on novel models that could help people with disabilities. Dr. Zehnder noted that DARE is willing to fund small, potentially risky projects that could yield proof of concept and advance the research hypothesis. DARE recognizes that other entities support general rehabilitation research, so it focuses on engineering, although the program is open to research on all kinds of disability and involving all kinds of technology. DARE works to enhance diversity by directing some of its funding to people in institutions that are not considered R01-research institutions.

DARE supports research motivated by real-world needs. It seeks to engage people with disabilities as designers and researchers as well as potential users of the research output and to promote early collaboration to identify user needs. This approach has the added benefit of encouraging students to think about inclusivity in design and research. DARE supports engineering advances in personalized rehabilitation, specifically neurorehabilitation, and funds ambitious ideas that could advance the field of engineering. Dr. Zehnder encouraged participants to visit the Rehabilitation Research at NSF website to learn about workshops, programs, and funding opportunities.

NSF’s Convergence Accelerator, supported in part by NIH, facilitates collaborations in areas where research may converge across disciplines and sectors around innovative, sustainable solutions. It provides substantial funding for investigators to convene multidisciplinary teams that plan and strategize around research and translation. A subset of funded efforts receives additional support toward implementation and eventually commercialization of a product.

The Convergence Accelerator’s 2022 funding cohort includes a track dedicated to enhancing opportunities for people with disabilities. Projects focus on boosting assistive or accessibility technology that increases function. Some of the work in this track seeks to expand the capacity of people with disabilities in the workforce broadly. One project is developing a framework to accelerate the design and implementation of low-cost, wearable technology that enhances post-stroke recovery by engaging stroke patients from medically underserved populations in the design process. Another is adapting current wheelchair controllers to give users more choices around which muscles or movements they use to drive their wheelchairs.

The National Science Board’s 2023 vision includes a substantial focus on expanding the workforce by bringing in people traditionally underrepresented in science, technology, engineering, and mathematics (STEM), including people with disabilities. It would address the “missing millions”—people potentially capable of success in STEM fields who currently have no readily available pathway to STEM careers.

Dr. Zehnder said inclusivity has always been part of the NSF vision. Examples include support for student design projects, such as one that improved the design of wheelchair footrests; funding to meet the individual workplace needs of people with disabilities; and efforts to encourage more people with disabilities to pursue STEM fields. Dr. Zehnder finished by stating that DARE is currently searching for its next permanent director.

Discussion (4:16:07)

A board member suggested that NSF consider more outreach to K–12 teachers and high school students. Dr. Nitkin complimented Dr. Zehnder’s ability to get engineers to focus on scalability and outcomes of the research; Dr. Zehnder said that with limited funds, such focus is necessary.

Updates in NIH Peer Review (4:20:16)

Valerie Durrant, Ph.D., Director of the Division of AIDS, Behavioral, and Population Sciences, Center for Scientific Review (CSR), NIH

Dr. Durrant explained that CSR conducts the bulk of peer review of grant applications at NIH. It assesses the quality of the science and ensures that applicants get a fair, independent, and thorough review. CSR’s work is guided by the principles of transparency, data-driven decision making, stakeholder engagement, and staff engagement, training, and development.

The Evaluating Panel Quality in Review (ENQUIRE) Initiative recruits external and internal panels to assess each of NIH’s 170 study sections (a.k.a. review panels), including the makeup of sections and their alignment with the field. Review of all study sections takes up to 2 years, at which time CSR will make recommendations. The process is continual, so CSR reviews each study section every few years.

To mitigate bias and increase diversity within study sections, CSR is expanding training. It developed a bias-awareness training specific to peer review and includes testimonials and a mock study section review. During the past 2 years, about 16,000 reviewers have taken the 30-minute online bias-awareness training, and the feedback has been positive. Most of those who took the training said they would feel comfortable intervening to mitigate bias if a situation arose during review.

CSR has a mechanism for reporting potential bias in review. If CSR believes an application may have been affected by bias, it will re-review the application as soon as possible. If CSR does not agree that the study section review was biased or flawed, it will let applicants know about other avenues to appeal that finding. Most CSR bias reviews come from staff recognition of potential concerns, and CSR works to prevent, resolve, or redirect issues. CSR has seen results from its efforts to diversify the reviewer pool by gender, racial and ethnic minority status, institutional affiliation, geographic location, and career stage, among other factors.

To simplify the review process, CSR has proposed revising the review framework and is reviewing public comments on its proposal. The changes aim to focus reviewers’ attention on the scientific contribution and potential impact of the proposed research and reduce consideration of extraneous factors. The current five criteria would be condensed into the following three factors (which encompass the five criteria, indicated in the parentheses):

  • Factor 1: Importance of the research (significance, innovation), scored 1 to 9
  • Factor 2: Rigor and feasibility (approach), scored 1 to 9 and identifying strengths and weaknesses
  • Factor 3: Expertise and resources (investigators, environment), not scored, categorized as either “appropriate” or “gaps identified”

Most of the “additional review criteria,” which can affect the overall score, remain unchanged. Most of the “additional review considerations,” which do not affect the overall score, have been removed from the first level of peer review.

A request for information (RFI) about the proposed framework received more than 800 responses, mostly favorable. Dr. Durrant explained that Factor 3 is designed to mitigate reputational and other bias by asking reviewers to assess only whether the applicant has the expertise and resources to accomplish the proposed tasks. She noted that a minority of RFI respondents still believe that investigators and environment should be scored. Most suggested that CSR develop strong training resources to facilitate the new framework. An NIH-wide committee is reviewing the RFI responses and adjusting the framework as needed. A full report on the framework will be completed by April 30, 2023. Tentatively, the new framework would be applied to applications received in October 2024 and thereafter.

CSR is also revising the National Research Service Award fellowship review criteria based on community feedback and data showing that people who face disadvantages in pursuing research also face disadvantages obtaining fellowships. Most applicants come from a few institutions. CSR is proposing that the fellowship review criteria be condensed from five criteria to three considerations, the goal of which is to encourage reviewers to contemplate applicants’ potential rather than just assess their past experience. The revised framework eliminates the use of grades as a factor and focuses reviewers’ attention on more productive factors, such as scientific thinking, goals, and preparedness. CSR published an RFI on the revised framework that is open through June 23, 2023. It hopes to roll out the new framework at the same time as the new peer review framework.

Discussion (4:47:23)

Dr. Durrant indicated that there has been a lot of discussion about shortening the application to reduce the burden on applicants. Although a few items have been removed from the proposed framework for peer review, it was determined that the most time-consuming pieces of the application are still necessary for thorough review. A few items that are not scored have been removed.

CSR is open to suggestions about how to evaluate the success of the revised framework in mitigating bias. To ensure the process is fair and competitive, the new framework will be rolled out across all study sections at once, so there will be no opportunity to compare outcomes side by side with the current framework. Dr. Durrant said CSR can look at outcomes and assess whether reviewers’ comments align with their scores, for example. Some questions, such as whether study sections are identifying the science of the future, can be answered only over time.

Dr. Durrant explained that reviewers receive training in multiple topics. For each study section, scientific review officers provide comprehensive training that covers the criteria of the grant vehicle, expectations, and conflicts of interest, among other topics. This year, NIH will provide training to all reviewers on review integrity. NIH recognizes the overlap between reviewers and investigators and trains reviewers on how to maintain confidentiality. Every summer, study section chairs undergo training that emphasizes review integrity and bias mitigation. NIH also works with reviewers to address potential conflicts of interest.

Dr. Durrant noted that some of the training helps reviewers recognize innovation. If reviewers focus too much on the approach and overlook the potential gains of novel work, the scientific endeavor loses out on work of great value. Dr. Durrant acknowledged frustrations with review that appears to be biased toward applications that include a lot of preliminary data, which limits innovative research and disadvantages some applicants. The revised framework seeks to address some of the concerns about recognizing and rewarding innovation. Reviewers will be encouraged to focus on the value added and the potential benefits to find the best new ideas with the greatest impact. Dr. Durrant believed that the changes will also help improve the quality of applications. She noted that the main goal of training is ensuring that reviewers keep their attention on the criteria throughout the review.

Dr. Cruz summarized the process for responding to RFIs, which often ask for responses to specific questions but also accept all comments.

Recess (5:07:33)

The public portion of the meeting ended for the day at 3:38 p.m.

Day 2: May 2, 2023

The VideoCast recording of the second day of the May 2023 NABMRR meeting is available online.

Welcome (0:04)

The public meeting resumed at 9 a.m. Dr. Perreault welcomed NABMRR member Flora Hammond, M.D., and ex officio member Ed Vitelli of the Department of Education, who were unable to attend on Day 1.

Knowledge Translation (KT): Improving Research Scalability, Stakeholder Engagement, Clinical Uptake, and Validity (1:26)

Promoting Integrated KT Through Learning Health Systems (LHSs) Research (5:11)

Linda Resnik, Ph.D., PT, FAPTA, Professor of Health Services, Policy, and Practice, Brown University

KT seeks to close the long gap between research that identifies effective interventions and their implementation into practice, which takes 17 years on average. Part of the problem stems from research that is too narrowly focused, costs too much money, or does not reflect users’ needs. Research findings are typically disseminated through professional conferences and publications but are not translated into a format that the end user can adopt.

Dr. Resnik explained various definitions of and frameworks around KT, noting that KT overlaps significantly with implementation and dissemination research and also plays a role in quality improvement research. Integrated KT (iKT) is the application of KT throughout the entire research process, with input from stakeholders at every stage. The approach is particularly relevant to rehabilitation technology development, which benefits from having end users involved from the outset to ensure that products meet real-world needs.

An LHS integrates evidence into practice and supports continuous quality improvement with data and analysis. LHS research is conducted in real-world settings, so the work addresses challenges around quality, safety, and affordability in practice. The LHS research approach engages health care systems in identifying research priorities, refining the research question, and designing studies, making it more likely that the findings will be implemented.

The LHS Rehabilitation Research Network (LeaRRn) external link is a partnership among universities and health care systems that conducts research and promotes iKT skills. It offers multiple resources, such as webinars on pragmatic design and health equity and disparities research. Its Applied LeaRRning Cases provide real-world examples of iKT along with teaching materials. The LHS Scholars Program funds researcher partnerships with health care systems; together, partners form a plan to address a research priority of the health care system and seek funding to conduct the work. The Pilot Studies Program supports researchers embedded within an LHS in gaining preliminary data to inform larger research studies.

To stimulate iKT in rehabilitation research, Dr. Resnik proposed the following:

  • Increase availability of funding to convene stakeholder/researcher groups for planning purposes.
  • Require that new funding applications include a KT plan.
  • Provide larger budgets to fund KT.
  • Develop research opportunities that specifically require partnership between researchers and end users (e.g., health systems).
  • Support training and development of the rehabilitation research community to teach the skills needed for iKT and LHS research.
Discussion (24:46)

Dr. Resnik said LHS research can support innovation and new technology. For example, Brown University funded innovative, integrated research in nursing homes. However, Dr. Resnik emphasized, the health care system must be motivated to address the problem that the research covers. If the health care system identifies its priorities and research addresses it, then the system will be more likely to incorporate the results. Design and implementation should be carried out collaboratively.

Engaging Rehabilitation Researchers in KT: Support, Culture, and Incentives (28:00)

Xinsheng “Cindy” Cai, Ph.D., Principal Investigator and Project Director, Model Systems Knowledge Translation Center (MSKTC)

The National Institute on Disability, Independent Living, and Rehabilitation Research’s (NIDILRR’s) Model Systems programs seek to improve care and outcomes for people with spinal cord injuries, traumatic brain injuries, or burns. They conduct research to develop interventions, medications, and devices and provide multidisciplinary rehabilitation. The MSKTC, also funded by NIDILRR, works with Model Systems programs to develop and disseminate evidence-based resources.

Dr. Cai said the key to successful KT is ensuring that the new product or intervention has relevance (meaning it addresses real issues faced by individuals), feasibility, usability, and reach. The goal of KT is empowering users to make informed decisions and take action. Stakeholder engagement in all aspects of research is crucial, beginning with the identification of needs.

NIDILRR supports five KT centers, including the Center on KT for Disability and Rehabilitation Research (KTDRR) external link, and PCORI also supports a KT center. MSKTC offers numerous resources and tools, including courses on KT for occupational therapists, physical therapists, and speech and language pathologists. It also provides training on engaging policymakers around change. KTDRR and the Center on Knowledge Translation for Employment offer a joint database on KT strategies. The Initiative to Mobilize Partnerships for Successful Assistive Technology Transfer (IMPACT) Center also focuses on KT. PCORI provides many resources, including tools for engaging consumers in the research team.

To foster a culture of KT, MSKTC has committees of champions who meet regularly to set the vision for KT and plan activities. Leadership support for KT, including leaders’ involvement in KT activities, also contributes to the culture. MSKTC offers many high-quality resources in multiple formats for clinicians, patients, and families that are updated annually. Its new Spanish-language website has reached many people in other countries. The MSKTC ambassadors bring issues to life with real-world stories. MSKTC surveys users about their needs and preferences to collect data for improvement.

Professional organizations and journals recognize the importance of KT, and some journals now require a KT component. An MSKTC study found that to reach clinical practice, research must be accessible and digestible and include clinical practice recommendations. NIDILRR and PCORI incorporate KT into their grants. CDC has funded studies on implementing KT principles into research, including a study on policymakers’ needs that led to creation of an NIDILRR–CDC fact sheet for policymakers about traumatic brain injury.

Discussion (46:45)

Dr. Cai reiterated that stakeholder engagement is a key feature of KT. If, for example, the primary user will be the caregiver rather than the client, then caregivers should be engaged in the research process to provide input on feasibility.

KT in Medical Rehabilitation Research (49:40)

Amy Kilbourne, Ph.D., M.P.H., Professor, Learning Health Sciences, University of Michigan

Dr. Kilbourne said the long gap in translating research into practice demonstrates that research timelines do not match community needs, so health care systems and providers make decisions without waiting for the research. Researchers lack incentives to engage the community or scale up the work. Research findings often are not shared with the subjects or sites that took part.

Like KT, implementation science involves problem-focused research embedded in health systems or community organizations. It involves the community in all aspects and considers long-term sustainability of interventions. Implementation science looks beyond the effects of treatment and considers the behavioral changes that must occur to facilitate product or intervention uptake.

The VA is the nation’s largest embedded research program. It serves 9 million veterans with an integrated system of care that has captured data in electronic health records for more than 20 years. It has funding dedicated to research across the spectrum of care. A national implementation system, the VA Quality Enhancement Research Initiative (QUERI), supports the work and provides training in implementation science. The VA also has interdisciplinary rehabilitation research and development centers across the country.

QUERI’s roadmap for implementation science guides researchers throughout the process, from engaging stakeholders and developing a shared agenda through planning for treatment fidelity and sustainability over the long term. The VA Clinical Trial Implementation Planning Assessment Tool outlines the steps, beginning with patient and provider acceptance before the research is initiated and continuing to the goal of routine uptake.

The VA’s Function QUERI brought together partners to promote uptake of evidence-based practices around functional improvement. The effort included training for clinicians and caregivers, and patients benefitted from good outcomes.

Dr. Kilbourne outlined three research designs to promote implementation. One version follows the traditional clinical research approach of studying effectiveness of an intervention and then observing the implementation. Another empowers providers to test and assess various strategies. A third minimizes risk by testing the treatment and implementation strategy at the same time.

Effective implementation provides tools to overcome anticipated barriers. In particular, there must be a focus on behavior change, with protocols that support the provider in implementing the intervention. Implementation strategies can push interventions into practice by creating processes that drive change (e.g., incentives, training) or pull interventions up from the local level by building on existing relationships and empowering individuals to think strategically. Dr. Kilbourne referred to the latter as transformational change, noting that innovations are always competing against an idealized notion of how current practice works. Implementation outcome measures include reach, effectiveness, adoption, implementation, and maintenance.

Dr. Kilbourne offered an example of a hybrid implementation science strategy, Replicating Effective Programs, in which local mental health care providers sought out veterans who had left care and helped direct them to available services. The program succeeded by working with community providers, creating a manual in lay language and training for providers, and testing ways to help providers implement the protocol. A subset of providers also had regular contact with implementation experts and links to peers to address barriers, build coalitions, and make the business case to leadership for support. Providers who received additional feedback to facilitate implementation were more likely to sustain the intervention over time. Dr. Kilbourne pointed out that the additional facilitation involved less than 8 hours per site and thus was not that costly.

Discussion (1:15:00)

Dr. Resnik said it was extremely important to understand the context of an intervention, such as the time required and insurance reimbursement issues. Without understanding the barriers and facilitators to uptake, it is difficult to design an intervention that matches users’ needs. Dr. Kilbourne agreed, adding that pragmatic trials allow researchers to test practical solutions and gather input from patients and community partners. Randomized, controlled trials administer an intervention in its ideal form. Researchers may be reluctant to conduct pragmatic research, which requires them to embrace heterogeneity.

Dr. Cai noted that NIDILRR’s KT centers offer technical assistance as well as resources to help researchers take steps toward implementation. She recommended the KT strategies database and MPKTC’s toolkit and courses. Dr. Kilbourne recommended the implementation training matrix available on the QUERI website.

Dr. Resnik pointed out that an LHS is any system that can use its own data to learn. It can be a small community health clinic or a large health care system. If the intervention will be used in small practice settings, having information from other small practice settings is helpful, so the size of the institution does not matter. Dr. Kilbourne said researchers can consider first forming a learning community—that is, a group with a shared goal and some structure of governance that has data it can use to improve care.

Those conducting basic research would benefit from the principles of KT. Dr. Kilbourne recommended that such researchers look at the user-centered design approach being used by community research studios in institutions funded by NIH’s Clinical and Translational Science Awards.

Dr. Nitkin pointed out that NIDILRR is ahead of the field in requiring researchers to address implementation in their grant applications. He also noted that journals are beginning to highlight the implications of research. Persistent barriers to KT include the fact that academic institutions do not recognize the time and effort required for researchers to conduct community engagement, so researchers do not get pay, protected time, or credit for such work. Also, reimbursement from the Centers for Medicare & Medicaid Services (CMS) is a critical factor in uptake. Dr. Resnik suggested that researchers work with CMS to determine what kind of data are needed to inform policy and payment decisions.

A board member noted that success for most researchers is judged by the number of publications generated, not by implementation of the findings. If implementation is a priority, that should be incorporated into review and scoring criteria. Others added that KT requires additional resources, and researchers should not be expected to achieve implementation without additional funding.

NICHD Director’s Report (1:39:05)

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

Budget (1:41:54)

Dr. Bianchi summarized the fiscal year (FY) 2023 budget. It includes set-asides for several projects housed at NICHD, which she said signals that Congress is aware of and supports NICHD’s work. Across NIH, the FY 2023 budget includes $90 million for the INCLUDE (Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome) Project and $10 million for Tackling Acquisition of Language in Kids (TALK), a collaboration among NICHD and four other ICs. Dr. Bianchi is the executive director of the NIH committee responsible for setting the research agenda for the $40 million allotted to study the health impacts of climate change, and she strives to ensure that the agenda recognizes people with disabilities. Federal funding for research related to firearms has only recently been permitted, and NIH received $12.5 million for such work. It also received $180 million to support the Environmental influences on Child Health Outcomes (ECHO) Program.

NIH’s budget has increased significantly throughout the past 10 years. However, President Joe Biden’s proposed budget for FY 2024 recommends flat funding for NIH, anticipating that Congress will likely try to trim the overall federal budget. In its funding justification to Congress, NIH highlighted ESIs funded by the Helping to End Addiction Long-Term® (NIH HEAL®) Initiative who demonstrated the success of a nonpharmacological approach to treat neonatal opioid withdrawal syndrome.

Dr. Bianchi and her NIH colleagues interact with Congress frequently. They have provided briefings on the Task Force on Research Specific to Pregnant Women and Lactating Women, the HEAL Initiative, and climate change research. Dr. Bianchi noted that the new leadership in the House prefers to hear testimony from NIH Acting Director Lawrence Tabak, D.D.S., Ph.D., rather than IC leadership, and appears to be more concerned with oversight than budget details. Upcoming Senate committee hearings will involve the NIH acting director and IC directors. Dr. Bianchi will testify at a House hearing on maternal mortality, which she noted is a unique topic for Congress.

NCMRR Connections Within NICHD (1:52:03)

Dr. Bianchi praised Dr. Cruz for her leadership around ableism. Regenerative rehabilitation speaks to one of NICHD’s 10 strategic plan aspirational goals; a 2021 workshop on opportunities for rapid advancement of limb regeneration led to RFA-HD-24-004: Opportunities for Advancing Limb Regeneration Research (R01 Clinical Trial Not Allowed), https://grants.nih.gov/grants/guide/rfa-files/RFA-HD-24-004.html, which will be awarded soon). NICHD has long sought to include people with disabilities in reproductive health research. A recent paper provided yet more evidence that people with disabilities who are pregnant do not receive the same standard of care that others do.

Opportunities in Rehabilitation Research (1:54:33)

The FDA approved Vivistim for stroke patients, which opens the door to more implementation research on devices as implants become more affordable. NINDS has established a NOFO on spinal cord stimulation, NOT-NS-23-038: Efficacy Trials of Epidural Stimulation for Spinal Cord Injury.

Dr. Cruz represents NICHD on the BRAIN Initiative. That program has developed basic neuroscience tools that target specific cell types for recording and modulation, which might be leveraged for rehabilitation research on neuroplasticity interventions.

Recent findings demonstrated that mice are not accurate models for studying trisomy 21 as previously thought, which highlights the importance of rigor and reproducibility in research as well as the need to update animal models.

Advanced Research Projects Agency for Health (ARPA-H) (1:58:22)

ARPA-H will rely on some NIH infrastructure, but its director reports to the HHS Secretary. It received $2.5 billion to start up in FY 2023. ARPA-H seeks innovative program managers who can bring together multidisciplinary teams from various sectors. The program managers pitch high-risk, high-reward research projects in a very competitive system. ARPA-H launched an open, online competition for project proposals in March, and the submissions and status are available online.

ACD Working Groups (2:01:15)

The ACD Working Group on Diversity (WGD) has a subgroup on people with disabilities. In December 2022, it presented the following findings to the ACD with its ACD WGD Subgroup on Individuals with Disabilities Report (PDF 644 KB):

  • People with disabilities are both the single largest and the fastest-growing minority population in the United States.
  • People with disabilities represent approximately 9% of the scientific workforce.
  • Researchers with disabilities are underrepresented in NIH funding.
  • Few data are publicly available about disability prevalence in NIH and in the broader research workforce or the participation of people with disabilities in NIH-funded studies.
  • Current NIH efforts to collect disability data on the research workforce are inadequate.

The subgroup recommended the following:

  • Update the NIH mission statement, dismantle structural ableism across NIH, and promote disability inclusion.
  • Expand inclusion of the disability community and perspectives of people with disabilities.
  • Conduct research on disability health and health care disparities and equity.
  • Ensure that disability inclusion/anti-ableism are incorporated in all DEIA efforts.
  • Maintain accountability for disability inclusion.

The ACD accepted the report and recommendations, which are currently being evaluated by the Office of the Director.

The ACD recently established the Working Group on Re-Envisioning NIH-Supported Postdoctoral Training to evaluate the shortfall in U.S.-based postdoctoral fellows. The working group will take into account factors such as salary, quality of life, work–life balance, access to child care, and job opportunities. Its recommendations are due in December 2023.

NIH-Wide Strategic Plan for DEIA (2:05:03)

NICHD is among those trying to promote accessibility in the implementation of the strategic plan. NCMRR is featured in a callout in the strategic plan. The executive summary of the plan talks about sustaining DEIA through structural and cultural changes.

Staff Changes (2:06:19)

Amanda Alise Price, Ph.D., was appointed director of the NICHD Office of Health Equity. Chris McBain, Ph.D., is the new NICHD scientific director; he had been acting scientific director since 2021. NICHD has openings for program officers in several areas.

Discussion (2:10:40)

Dr. Bianchi stated that the shortfall of postdoctoral fellows is not unique to any particular discipline but rather affects research across NIH. She noted that fewer than 1% of people who receive NIH funding take a linear path from predoctoral NIH support to postdoctoral support to career development awards to R01 grants. Regardless of race or ethnicity, most investigators receive funding from various sources throughout their training and career, which means they are in and out of NIH’s so-called pipeline. About half of investigators enter the NICHD funding pipeline at the R grant stage. Dr. Bianchi said deeper analysis of the data is needed to better understand the pipeline, including on people who get NIH grants later in their careers. She also said that analyzing the fate of applicants who did not get NIH funding could change the thinking dramatically.

Discussion and Formation of a Working Group on Training (2:14:37)

Eric J. Perreault, Ph.D., Chair

Dr. Perreault summarized the NABMRR’s discussion from Day 1, held following the public portion of the meeting. During that discussion, Dr. Cruz presented data showing that NCMRR spends a larger proportion of money than NIH or NICHD on training. However, the so-called pipeline is not really a pipeline at all; many researchers come into the funding system without a history of T or K training awards. NCMRR discontinued K12 awards with the rationale that more people would migrate to individual K awards. However, the number of K award applications has not increased, and NCMRR is seeking ways to bring more trainees into the field. The data also showed that the number of people from underrepresented groups (URGs) funded by NIH has grown, but the proportion of people from URGs funded compared with other populations has not changed significantly.

Dr. Perreault said the NABMRR members agreed that NCMRR should continue to focus on training, and they requested data on several topics to help inform discussion. There was strong support for building a robust community of research around rehabilitation that is accessible to a broad group of scientists. It was noted that some of the strengths of the K12 award mechanism, such as mentorship for people whose home institutions do not have a strong research infrastructure, might be hard to replicate with individual K awards. Increasing access to training programs is essential to the future of rehabilitation research, and programs should be better integrated. The K99 Pathway to Independence awards may be an attractive alternative.

Discussion (2:18:31)

Dr. Cruz clarified that NCMRR would like the board to establish a working group to delve further into the issues around training. The working group would make recommendations to the board. If the board agrees, the recommendations would be forwarded to the NCMRR director. NCMRR would provide the working group with data and organize discussions about, for example, where trainees fit in the overall ecosystem and what other federal agencies are doing to support training.

Dr. Cruz said the recommendations of the ACD working group on postdoctoral fellowships (expected in December) would influence NCMRR, but she did not think NCMRR could afford to wait until those recommendations are available before considering the specific needs of training in the field of rehabilitation.

It was noted that there is little information to explain why people from URGs continue to make up such a low proportion of NIH funding awards. Dr. Cruz said it is not possible to get such data specific to NCMRR (because the number of awards to people from URGs is so low), but her staff could provide information from the STEM and biomedical literature.

Dr. Cruz said the working group would need to decide what constitutes success, given that not every award recipient would be expected to go on to earn an R01 award. Training remains crucial, and the pipeline is broader than NIH; trainees also receive support from the VA and NSF, for example. Some trainees are not eligible for training awards because of their immigration status but could be eligible for R01 awards later, which could distort the pipeline data. Dr. Nitkin suggested considering the importance of ancillary support for trainees who may not be interested in heading their own laboratories but who play an important role in collaborative research. More awards now recognize the need for team science. Dr. Cruz will consider scheduling a presentation on training at the next NABMRR meeting.

Several board members volunteered to participate in the working group.

Concept Clearance (2:30:12)

Joe Bonner, Ph.D.

Dr. Bonner explained that NCMRR is seeking clearance from the NABMRR to proceed with a request for applications (RFA) for the next iteration of the Medical Rehabilitation Research and Resource Network. The RFA would continue more than 20 years of support for infrastructure and evolving needs in rehabilitation research. The purpose of the research centers is to facilitate impactful research while providing specialized resources, hands-on training, pilot funding, and other infrastructure. The RFA would solicit applications across the range of medical rehabilitation research. The resulting network would research new methods to build new tools, provide training, and support the infrastructure needed to move the rehabilitation research field forward. The RFA will highlight areas of interest to NIH, but investigator-initiated research topics will be allowed.

The RFA would require centers to incorporate people with lived experience (with relevant lived experience defined by the applicants). Other ICs may wish to support the medical rehabilitation research infrastructure, and NCMRR will work to integrate other ICs into the program. The objective is to promote impactful rehabilitation research and cross-disciplinary collaboration in medical rehabilitation research. Support for the new centers would help recruit new researchers to the field. Evaluative measures would include research output; dataset production, use, and reuse; training interactions; and R series applications to NIH throughout the field of medical rehabilitation research.

Discussion (2:33:50)

A board member said that new researchers find it difficult to break into the field and that the RFA might perpetuate that situation unless there are specific efforts to bring in new researchers. Another member said NCMRR should provide data describing the geographic distribution of research activities to help the board determine whether successful centers are consolidating opportunities rather than distributing them. Whether the RFA would hinder diversity in general or the distribution of funds across communities is not clear.

A board member suggested engaging industry, which can provide resources to accelerate translation as well as training opportunities. Industry representatives should be involved in research design so that there is a built-in link that connects the work to translation.

By a show of hands, the board accepted the concept proposed with modifications that respond to the concerns and comments raised.

Comments from Retiring Board Members (2:44:06)*

Abiodun Akinwuntan, Ph.D., M.P.H., said his participation on the board enabled him to understand funding processes better and grow the research investment at his institution. In considering how much to invest in training new researchers, he observed that applicants fall across a spectrum of skills and experience. Ideally, training produces researchers who can write good research questions, conduct the research, and translate it into practice. Dr. Akinwuntan reminded participants that the goal of research is to find treatments. However, Dr. DeLuca’s experience demonstrates that some interventions require sustained research before they can gain traction. Grant reviewers should be aware that some topics require continued investigation, so they should not focus solely on novelty and innovation. Dr. Akinwuntan pointed out that advances in acute care have reduced mortality, but more people are surviving with morbidities, so rehabilitation is increasingly important. There is still much work to do. Dr. Akinwuntan appreciated NIH for taking the board’s advice seriously. He thanked all those involved for the opportunity to serve.

Dr. DeLuca appreciated the opportunity to participate, adding that she learned a lot. She encouraged future board members not to wait to interact but rather to step in and make their voices heard, because being part of the conversation is the point of being a board member. Dr. DeLuca applauded NCMRR leadership for consistently demonstrating that it cares about the board’s input. She hoped that other members would continue to remind the board to keep pediatric populations in mind.

Dr. Perreault thanked the NCMRR leadership for inviting him to participate in and chair the board. He noted that he benefitted from various NIH awards throughout his career and that NCMRR support was key. Dr. Perreault hoped the emerging multidisciplinary community around rehabilitation research would persist and grow. He advised new members to enjoy their time on the board, noting that he appreciated hearing the intellectual discourse and varying viewpoints. NCMRR has great leaders who listen and respond to the board, so members should make the most of that, said Dr. Perreault.

Final Summary and Planning for Next Meeting (2:49:40)

Eric J. Perreault, Ph.D., Chair, and Barbara S. Bregman, Ph.D., PT, Incoming Chair

Potential Topics for December 2023 Board Meeting

  • Overview of research on rehabilitation related to injury (e.g., military, sports, or accident) as opposed to hereditary disabilities, and relationship between clinical volume and research funding
  • Inclusion of persons with the lived experience in research and in knowledge translation; successful infrastructure models
  • Understanding of research deliverables and keeping research scientists focused on translation to the user; team building; case studies; end-users and therapists
  • Global perspectives on implementation in low-resourced settings
  • An NIDILRR presentation on requiring KT in grant mechanisms
  • Support of team-science and community support
  • Lessons from COVID-19 about accelerating research into practice
  • CMS policies and reimbursement; perspective of health care systems on implementing new technology

Meeting Format

  • In-person meetings are preferable, but virtual participation should remain an option
  • For hybrid meetings, people participating virtually should be on screen during discussions

Adjournment (3:12:19)

Eric J. Perreault, Ph.D., Chair

Dr. Perrault adjourned the meeting at 12:12 p.m.

 

* Dr. Akinwuntan gave his parting comments at 1:31:40.