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 Meeting Format, 4-hour session
Edelle C. Field-Fote
Stephanie C. DeLuca
Robyn Watson Ellerbe
Arthur W. English
Thubi H.A. Kolobe
Albert C. Lo
Craig M. McDonald
Eric Jon Perreault
David J. Reinkensmeyer
Elizabeth R. Skidmore
Ex-Officio Members Present:
Daofen Chen, NINDS
Patricia Dorn, VA
Lana Shekim, NIDCD
Ex-Officio Members Absent:
Jerome L. Fleg, NHLBI
Lyndon Joseph, NIA
Mary F. Lovley, OSERS
Chuck Washabaugh, NIAMS
James Whitehead, NIDILRR
Erik Wolf, DoD
NICHD Staff and Visitors
Welcome, Introduction of New Members, and Approval of Minutes
Edelle C. Field-Fote, P.T., Ph.D., board chair, called the meeting to order at 9:00 a.m. Minutes from the previous meeting of May 2019 were unanimously approved. The Board will meet December 7, 2020 (virtual format), May 3-4, 2021, and December 6-7, 2021.
NICHD Director’s Report
Diana W. Bianchi, M.D., Director, NICHD
New NCMRR Director Selected
After a national search process with outstanding candidates, Theresa Cruz, Ph.D., was selected as the new director of NCMRR after serving as acting director for the past year. Dr. Cruz earned a B.S. in biomedical engineering with highest honors from Rutgers University and received her M.S. and Ph.D. degrees in biomedical engineering from Northwestern University. After conducting research at the Rehabilitation Institute of Chicago that focused on stroke-induced motor control and gait impairments of the lower limb, Dr. Cruz joined NIH and NCMRR in 2009 to manage medical rehabilitation grants in the Devices and Technology Development, Rehabilitation Diagnostics and Interventions, and Small Business Innovation Research/Small Business Technology Transfer (SBIR/STTR) programs. In 2015, she completed a research detail at the Functional and Applied Biomechanics Laboratory in the Rehabilitation Medicine Department of the NIH Clinical Center. As a team lead in the NIH Brain Research through Advancing Innovative Neurotechnologies® Initiative, Dr. Cruz co-managed a portfolio in neurotechnology development.
The federal government is currently funded through September 30, 2020. COVID-19 stimulus funds were appropriated through House Resolution 748, the Coronavirus Aid, Relief, and Economic Security (CARES) Act, which directed $945.4 million to NIH to “prevent, prepare for, or respond to coronavirus domestically or internationally” and included specific funding for the National Institute of Allergy and Infectious Diseases (NIAID), National Heart, Lung, and Blood Institute (NHLBI), National Institute of Biomedical Imaging and Bioengineering (NIBIB), National Center for Advancing Translational Sciences, National Library of Medicine, and the NIH Office of the Director (OD). NICHD did not receive targeted funds through the CARES Act, but an additional supplement may be forthcoming. On March 4, Dr. Bianchi testified about fiscal year 2021 appropriations at the House Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. The appropriations bill for fiscal year 2021 passed in the House of Representatives but has not yet been acted upon by the Senate. A continuing resolution is possible.
Dr. Bianchi presented an overview of 10 collaborative initiatives that NIH has launched in response to the COVID-19 pandemic.
Accelerating COVID-19 Therapeutic Interventions and Vaccines (ACTIV). This trans-NIH effort is a public-private partnership led by NIH Director Francis Collins, M.D., Ph.D. A publication in the Journal of the American Medical Association (May 2020) outlines the parameters of this effort and shows the tremendous progress that is being made.
Rapid Acceleration of Diagnostics (RADx℠) Initiative for COVID-19. This large trans-NIH phased program began with a national call for innovative technologies. Thousands of submissions were rapidly evaluated by external committees, and the most promising proposals entered the fast-track development pipeline. The program’s overarching goal is to develop and widely deploy accurate and rapid diagnostic tests for COVID-19 (i.e., millions of tests per week). One aspect of the initiative (RADx Advanced Technology Platforms, or RADx-ATP) is dedicated to the development of existing accelerated technologies. Additional aspects of the initiative aim to further develop existing tests (Rapid Acceleration of Diagnostic Technologies, or RADx-Tech), provide testing for underrepresented populations, including children and people with disabilities (RADx Underserved Populations, or RADx-UP), and explore radical ideas for testing and deployment (RADx Radical, or RADx-rad). A recent special report in the New England Journal of Medicine further describes the RADx initiative.
Multisystem Inflammatory Syndrome in Children (MIS-C) Study. Led by researchers at Boston University, this clinical trial is enrolling children who present with a fever greater than or equal to 38.0 degrees Celsius for 24 hours or more; laboratory evidence of inflammation; clinically severe illness requiring hospitalization, with multisystem (i.e., two or more) organ involvement (e.g., cardiac, renal, respiratory, hematologic, gastrointestinal, dermatologic, neurologic); and a positive test for current or recent SARS-CoV-2 infection or exposure within the preceding 4 weeks. MIS-C has at least four observed variations, including full-blown MIS-C (i.e., patient is critically ill and admitted to the intensive care unit); a milder version of MIS-C (i.e., patient is hospitalized but not in intensive care); significant respiratory involvement; and classic Kawasaki disease. Approximately 90 children in the United States have died from COVID-19 to date.
Predicting Viral-Associated Inflammatory Disease Severity in Children with Laboratory Diagnostics and Artificial Intelligence (PreVAIL kIds). On short notice and without a designated budget, the directors of NICHD and NHLBI partnered with NIAID to create the PreVAIL kids trans-NIH research platform, which is using a streamlined common data protocol for data collection, sharing biospecimens, and robust cloud-based data sharing. Its three areas of focus are understanding COVID-19 in the at-risk pediatric population; creating a comprehensive understanding of the phenotypes, natural history, outcomes, and pathobiology associated with COVID-19 in children; and providing long-term follow up, multisystem testing, and immunological testing for patients who develop MIS-C. Numbers of cases in children have been increasing over time. A Funding Opportunity Announcement (FOA) (RFA-OD-20-023) has been issued for the PreVAIL kids study.
Pediatric Trials Network. This existing network will be used to gather information on the pharmacokinetics and safety of several drugs that are not typically used in children, but that are used to treat COVID-19. The aim is to define appropriate dosing of drugs for use in treating COVID-19. The project has incorporated an opportunistic study of 14 drugs, including antiviral and anti-inflammatory drugs (e.g., remdesivir, lopinavir/ritonavir, ribavirin, and tocilizumab), into an existing protocol. More products can be added as they are implemented in the care of children for COVID-19. NICHD has partnered with nearly 50 study sites across the country to analyze archived blood samples and characterize the pharmacokinetics of these drugs across the pediatric age range. The study will collect information on drug safety and clinical course (e.g., date[s] of positive testing, duration and type of respiratory support, duration of hospitalization, mortality). This network will also be used to jump-start the PreVAIL kids study.
COVID-19 and Pregnancy. NICHD’s existing Maternal-Fetal Medicine Units Network launched a study in May to enroll thousands of pregnant women at 12 sites. The goal is to compare overall antenatal care, maternal health complications, rates of cesarean sections, and maternal mortality in pre- and post-COVID-19 eras. It includes a natural history study of 1,500 COVID-19-positive pregnant women. The research team is developing common data elements (CDEs) with other NICHD networks and encouraging other registries adopt these CDEs to aid future meta-analyses. Discussions have also begun with outside organizations for potential collaborations on registry efforts for pregnant women and newborns. NICHD is further advocating the inclusion of pregnant women as well as children in the ACTIV and RADx initiatives because those programs promote rapid testing and include clinical trials for therapeutic vaccines.
COVID-19 and Pregnancy—Global Network for Women’s and Children’s Research. This existing global research network will pivot and begin to estimate the prevalence of SARS-CoV-2 infection during pregnancy. Using antibody testing at delivery, the study seeks to compare the maternal, fetal, and neonatal outcomes of SARS-CoV-2-infected women against those of noninfected women. It will enroll approximately 2,000 pregnancies for each site in Bangladesh, the Democratic Republic of the Congo, Guatemala, India, Kenya, Pakistan, and Zambia.
COVID-19 and Pregnancy—Vertical Transmission. Although several groups have studied the transmission of SARS-CoV-2 from mother to fetus/baby, there are still no straightforward answers. Conflicting reports have been published on the role of angiotensin-converting enzyme 2 receptors in the placenta. The same data have been interpreted differently. This study aims to provide definitive answers about the incidence and mechanisms of vertical transmission.
COVID-19 in Populations with Disabilities. The impact of COVID-19 on individuals with intellectual and developmental disabilities (IDDs) will be studied by NICHD’s Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers (IDDRCs) network. An article “The Impact of COVID-19 on Individuals with IDDs: Clinical and Scientific Priorities,” from IDDRC investigators has been submitted to the in the American Journal of Psychiatry for publication. Key considerations for this effort include restoring in-person support services or comparable alternatives, evaluating the disproportionate impact of mitigation efforts and social distancing, addressing inequity in education across the lifespan, implementing emergent telehealth practices in clinical care, and ensuring access to testing and appropriate medical care for individuals with IDDs who are infected with COVID-19. Children with atypical neurodevelopment are particularly affected when they are unable to attend school in person, and the research will explore this phenomenon.
COVID-19 in Individuals with Down Syndrome. A survey conducted by the Trisomy 21 Research Society in a small sample of approximately 350 respondents identified a fatality risk for middle-age individuals with Down syndrome. Funding is available through administrative supplements for projects that improve understanding and treatment of COVID-19 infection in individuals with Down syndrome and that reduce COVID-19-associated morbidity and mortality for this population. Furthermore, a virtual workshop was held in early May to promote the development of clinical trials that further the understanding of co-occurring conditions across the lifespan in people with Down syndrome (e.g., whether having three copies of interferon genes that map to chromosome 21 predisposes individuals to complications of COVID-19). Patients and advocates suggested using a telehealth mechanism for this type of research.
NICHD Strategic Plan Implementation
NICHD’s Strategic Plan 2020 (PDF 2.3 MB) was published in September 2019, with a focus on scientific research themes, scientific stewardship, and management and accountability. NICHD staff members have been making progress toward each goal. Extramural branch priorities have been refreshed, finalized, and posted online. The institute is retaining flexibility to accommodate advances in technology and the impact of the COVID-19 public health crisis. Progress will be regularly reported to NICHD advisory boards and councils to ensure transparency.
A Board member commented that he agreed with the idea to expand the use of telehealth and digital technologies for patients and families with Down syndrome who are interested in participating in clinical research, noting that it had been successful for his clinical research site. Telehealth also addresses geographic issues and expands geographic reach, reduces the time needed for visits, lowers participant burden, and may reduce the cost to conduct trials. The Board member asked if NIH would be issuing additional Requests for Applications (RFAs) to promote telehealth-based clinical trials for populations with disabilities and other populations that face health disparities. Dr. Bianchi said that the pandemic has created a vast leap into the future and shown much about what can be done, so this type of thinking will be encouraged in the next phase of funding development. Dr. Cruz added that NCMRR has been touting telehealth-based rehabilitation for many years, will continue to do so, and will welcome and expand these applications for real-world outcomes.
NCMRR Director’s Report
Theresa Cruz, Ph.D., Director, NCMRR
After receiving a warm welcome from Dr. Field-Fote and Ralph Nitkin, Ph.D., and following recognition that July 26, 2020, was the 30th anniversary of the Americans with Disabilities Act of 1990, watershed legislation that was responsible for creating NCMRR, Dr. Cruz presented updates on NCMRR staff and activities along with updates on all NIH rehabilitation programs, including those that might address the COVID-19 pandemic.
- Eliza Polk was hired as an administrative assistant.
- Alicia Ross was hired as a health specialist.
- Onboarding had begun for a new program officer.
- Jennifer Jackson, Ph.D., was detailed to NIBIB to support the RADx initiative.
- Adam Politis, M.S., CCC-SLP, was detailed to NICHD from the Rehabilitation Medicine Department at the NIH Clinical Center.
Dr. Cruz noted that NIH provided the following guidance for the extramural rehabilitation community during COVID-19:
- NIH is open for business, but patient and researcher safety are the first priorities.
- Program staff continue to be flexible and accommodating regarding research productivity and delays. Many of the normal administrative flexibilities have expired in the “new normal” time.
- Salary support during pandemic-related shutdowns continues (OMB M-20-26).
- Newly issued guidance for applicants specifies that proposals should not include COVID-19 contingency plans (NOT- OD-20-122).
- Reviewers have been given guidance to assume that pandemic-related issues will be resolved.
- Grantees should contact program officers and grants management staff with specific questions.
The Center for Scientific Review’s Evaluating Panel Quality in Review Effort (ENQUIRE) has implemented changes to study sections that are relevant to rehabilitation researchers. Among other ENQUIRE activities, the Risk, Prevention, and Health Behavior Integrated Review Group (IRG), the Behavioral Medicine: Interventions and Outcomes Healthcare Delivery and Methodologies IRG, and the Integrative, Functional, and Cognitive Neuroscience IRG have been reviewed and realigned in an effort to determine how well the scientific scope of the study section aligns with the current state of the science. Old study sections have been eliminated, and new study sections have been created.
Rehabilitation and COVID-19
Dr. Cruz thanked and acknowledged the frontline workers in the healthcare field and formal and informal caretakers for their incredible efforts during the pandemic. NCMRR is actively looking for ways to address the rehabilitation needs of COVID-19 survivors. Several authors have raised the need for rehabilitation of survivors and have begun to disseminate best practices. More research is needed in this area, especially in telerehabilitation services, outcomes, and the psychosocial, behavioral, economic, and long-term effects of COVID-19. These are all areas for future discussion by the community.
Dr. Cruz provided updates on the following NCMRR FOAs and activities:
Research Infrastructure Network. The Medical Rehabilitation Research Resource (MR3) Network has been updated and expanded to include six sites. It is co-funded by the National Institute of Neurological Disorders and Stroke (NINDS), the National Center for Complementary and Integrative Health (NCCIH), NIBIB, the National Institute on Nursing Research, and the National Institute on Deafness and Other Communications Disorders (NIDCD). For more background on the Network, visit go to http://www.ncmrr.org .
Pediatric Rehabilitation (R01). Three awards were made this summer under a special initiative (RFA-HD-20-005) to promote the rehabilitation needs of children with chronic, physical disabilities.
Early Career Researcher (R03). This FOA (PAR-20-042) represents the renewal of a special program to support basic and clinical rehabilitation researchers at the beginning of their independent research careers. With three annual due dates (March 2020, 2021, and 2022), there has been a great response from the community and the initial round of awards will be made in the fall.
Interagency Committee on Disability Research (ICDR) Website. NIH and NIDILRR are collaborating to create a searchable database of all federally funded disability research.
Outreach and Virtual Meeting Participation of NCMRR Staff. Joe Bonner, Ph.D., attended the Amputee Coalition’s 2020 National Conference. Dr. Nitkin helped to plan and attended the National Academies meeting on the State of the Science of the Use of Biomarkers to Establish Presence and Severity of Impairments.Dr. Cruz attended and served on a panel at the Institute of Electronic and Electrical Engineers ) Engineering in Medicine & Biology Society’s 42nd Annual International Conference. Jennifer Jackson, Ph.D., served on a panel and attended the American Society of Biomechanics Annual Meeting.
Upcoming Workshops with NCMRR Contributions
- September 16-17, 2020: Helping to End Addiction Long-termSM Initiative (HEAL Initiative) Workshop on Myofascial Pain. NCCIH and NIBIB are the primary sponsors of this workshop.
- September 21-22, 2020: Addressing Neuroimaging Challenges Across Populations and Settings. This meeting is sponsored by the NIH Blueprint for Neuroscience Research.
- October 15-16, 2020: Rehabilitation Research 2020: Envisioning a Functional Future. Registration is now open.
- December 1-3, 2020: Pathways to Prevention, sponsored by the NIH Office of Disease Prevention (ODP). The theme is “Can Physical Activity Improve the Health of Wheelchair Users?” NCMRR and NINDS received ODP support for the Pathways to Prevention Initiative. The goal is to inform the Physical Activity Guidelines and increase the focus on health and wellness in this population. The Agency for Healthcare Research and Quality is the systematic review and workshop partner, along with multiple institutes and centers (ICs), the U.S. Department of Veterans Affairs, the U.S. Department of Defense, National Institute on Disability, Independent Living, and Rehabilitation Research, and the Centers for Disease Control and Prevention (CDC).
Dr. Cruz said that her philosophy as a director centers on resources, partnerships, and communication. She described each of these areas as follows:
Resources. NIH should provide the resources and mechanisms the research community needs to do the projects that are necessary. Dr. Cruz is seeking input on what may not fit into typical NIH funding mechanisms (e.g., R01, R21), whether there are gaps in study sections, and whether traditional review groups can adequately address diversity and inclusion, big data and artificial intelligence, community-based health interventions, policies, and infrastructure.
Partnerships. Dr. Cruz said that Alison Cernich, Ph.D., did a phenomenal job of forging relationships across NIH, HHS, the federal government, advocacy groups, and private industry and with the grantees and applicants. Dr. Cruz plans to continue to build on those partnerships and look for areas that are ripe for more coordinated efforts.
Communication. NICHD has a wonderful Office of Communications and it provides great opportunities to highlight the science that NCMRR grantees are doing, along with rehabilitation lecture series, social media, press releases, and more. Dr. Cruz encouraged the community to remain connected and subscribe to the Rehab-NIH listserv at email@example.com for updates on funding, policy, and research activities.
Dr. Field-Fote thanked Dr. Cruz for her comments. Dr. Nitkin added that the pandemic could create opportunities for NCMRR to explore additional strategies to support people living with disabilities. He said that there will be new ways to serve patients in their own homes and communities and possibly the expanded use of telehealth approaches. Research proposals, especially in the short term, should reflect this new understanding. Dr. Bianchi agreed, noting the changes that have been taking place worldwide, especially in school-aged children.
Theresa Cruz, Ph.D., Director, NCMRR
NIH requires concept review and clearance of all RFAs. The NABMRR is one entity authorized to conduct this review and clearance. Dr. Cruz presented two concepts for Board discussion.
Undergraduate Prize for Assistive Technology
This concept is for a collaborative program with NIBIB to establish an Assistive Technology Award category within NIBIB’s Design by Biomedical Undergraduate Teams (DEBUT) Challenge. This prize would recognize the top submission in assistive technology. The objective is to engage undergraduate students in assistive technology topics early in their career to expand the pipeline of future rehabilitation researchers. Concept clearance is not required by NIH policy. This project would divert a small amount of funding from the investigator-initiated pool.
A Board member liked the undergraduate prize idea because it would allow students to tackle real-world problems. He suggested creating a mechanism for connecting interested students with rehabilitation principal investigators who could help define the scope of a DEBUT challenge project. Dr. Cruz suggested making connections through the NCMRR website.
A Board member suggested creating a wish list of project ideas for the student challenge. Dr. Nitkin agreed and added that the students also recognize unmet needs organically by participating in clinical setting activities.
A Board member suggested replacing “assistive technology” with “rehabilitation technology” to avoid a misunderstanding with the word “assistive.” Dr. Cruz agreed that “rehabilitation” would be broader and less limiting.
A Board member said that incorporating the goals of diversity and inclusion by requiring that persons with disabilities be included on each design team would be beneficial for providing input and advocacy. Dr. Cruz agreed and said that she would provide language to this effect for the award description.
A Board member asked whether there was a way to measure success over time for developing researchers from a young age. He encouraged adding a component to the award to allow the winning students to visit or connect with academic rehabilitation laboratories, where they could gain access to graduate programs. Dr. Nitkin said that R25 awards may also address this need. Dr. Cruz suggested connecting prize winners to SBIR companies and using the experience to develop NICHD-based prizes in the future.
Vote: The Board voted to approve the undergraduate prize concept.
National Survey on Pregnancy Risk Assessment Monitoring System (PRAMS) and Disability
This concept is for the renewal of an interagency agreement (IAA) between NCMRR and CDC to add disability-related questions to the CDC’s PRAMS. The IAA would generate data about the pregnancy experiences of women with disabilities based on survey responses from a nationally representative sample of U.S. women who have recently given birth. The objective of this collaboration is to produce publicly available data from a large sample of U.S. women for study by researchers and for hypothesis generation. Researchers planning to use these data have already submitted applications to NICHD. This effort complements the qualitative studies and structured interviews commonly undertaken by rehabilitation researchers in this area using convenience samples of women. These data will also contribute to the growing research on maternal mortality and morbidity in the United States. Concept clearance is not strictly required by NIH policy. This effort would divert funds from the investigator-initiated pool of funds; the cost is approximately equivalent to one R01 grant.
A Board member asked how NIH and CDC capture the relevant population of women with disabilities. Dr. Cruz said that a lottery system is used to send out postcards to women who have delivered babies. The questions on the disability scale identify the respondents who have disabilities.
Vote: Board members used Webex’s chat feature to express support for this concept.
2020 Rehabilitation Research Conference and Research Plan
Theresa Cruz, Ph.D., Director, NCMRR
Rehabilitation Research Conference
With a theme of “Envisioning a Functional Future,” the meeting will be held October 15-16, 2020 in a virtual conference environment. Fifteen ICs are contributing content to the conference, a trans-NIH effort through the NIH Medical Rehabilitation Coordinating Committee (MRCC). Funding is provided by NICHD, NINDS, NCCIH, the National Institute on Aging, and NIDCD. Considerations are being made for accessibility and time zone differences. Meeting content will be available on demand after the meeting, and there is no fee to attend. Board members are encouraged to attend and to invite students, trainees, and research participants. The virtual environment will be modeled after an in-person conference. It features a main lobby, with a welcome from Dr. Bianchi and a help desk. The speaker hall highlights one speaker at a time (i.e., no concurrent sessions) with a live Q&A moderated by NABMRR members. A poster hall will house abstracts, and the top 10 submissions will feature a recorded audio track that plays with the posters. In the exhibit hall, attendees will be able to meet NIH and other federal funders to discuss the MR3 Network and CDEs. The networking lounge has the capacity for scheduled discussions around research plan themes moderated by NIH staff. Participants can engage with one another in chat windows.
Rehabilitation Research Plan
The revised Research Plan on Rehabilitation is generally on schedule for publication. The data section is being updated to include 2019 data. The accomplishments and collaborations sections have been completed. Overall research themes remain constant from 2016. New research objectives have been vetted by NABMRR and MRCC subcommittees.
To obtain feedback and buy-in from the field, an IdeaScale website will be opened around the time of the conference (September through November). The team is working on acknowledging the pandemic without making the document about the pandemic. Dr. Cruz reviewed specifics from each section of the plan. Communications strategies for inviting comments on the Research Plan on Rehabilitation include the rehabilitation newsletter, social media, professional associations, consumer groups, and Board member distribution.
A Board member said that she was impressed with the realistic components of the virtual meeting platform. Another Board member commented that she appreciated the diverse images used on the virtual meeting platform. In response to a question, Dr. Cruz said that there is no limit on the number of presentations and asked Board members to continue to provide feedback. A Board member asked whether the poster sessions would be fully interactive. Dr. Cruz said that attendees will be able to send messages back and forth with poster presenters. Although the platform does not support video chat, presenters will be notified when someone is looking at their poster. A Board member suggested creating Zoom links between presenters and attendees looking at their posters as a type of engagement opportunity.
A Board member asked whether the pandemic created a need to modify the Research Plan on Rehabilitation to add additional components for telehealth and remote clinical trials. Dr. Cruz said that these types of changes would be welcome in the draft document before it went out for public comment or during the public comment period. The Board member encouraged others to review the document and suggest changes in light of the discussion from this meeting. Another Board member suggested adding a paragraph about the pandemic in the preamble of the document that Board members could review and edit. A third Board member said that because the pandemic was a public health emergency, the document might address how public health emergencies and natural disasters deeply affect rehabilitation research. A fourth Board member cautioned about including too much content on the pandemic. Dr. Cruz said that the timing of the document likely necessitated careful consideration of each of these comments. She asked Board members to provide final comments by the end of the month.
Scientific Presentation on Data Science in Rehabilitation: Opportunities, Challenges, and Resources
Ken Ottenbacher, O.T., Ph.D., NABMRR Board Member
Dr. Ottenbacher thanked NCMRR staff for the opportunity to provide a scientific presentation. His comprehensive presentation identified challenges, resources, and opportunities for incorporating data science into rehabilitation research.
Challenges. The challenges lie in the fact that data science can be overwhelming. Information overload, information anxiety, and an information explosion can intimidate researchers. Furthermore, large data science is an evolving field that is continually developing new and complex analytical tools and algorithms. Data science at NIH began with computers, the Internet, and cloud storage. The NIH Big Data to Knowledge program was launched in 2012. By 2013, data sharing and data repositories were under development. In 2018, NIH launched its first Strategic Plan for Data Science.
Resources. There are several federal resources for data science research. The White House Office of Science and Technology Policy published a memorandum in February 2013 directing the heads of executive departments and agencies to take measures to increase access to the results of federally funded scientific research. In 2015, the Institute of Medicine encouraged the sharing of clinical trial data in its report Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk . More recently, the 2018 NIH Strategic Plan for Data Science (PDF 475 KB) outlined five overarching goals and strategic objectives for achieving them.
Opportunities. The vast number of data science resources, including consortiums, data warehouses, and data repositories, provide many opportunities for rehabilitation research. Advances in bioinformatics, statistical computing, information technology, and the Internet have resulted in access to large amounts of data. Health and biomedical data, including include information related to rehabilitation, recovery, and disability, are available. Rehabilitation investigators are trained to conduct (prospective) patient-oriented clinical research rather than retrospective or secondary analysis of large/big data. Rehabilitation was one of the first health areas to recognize and explore functional independence as a goal for persons with injury, disability, or chronic conditions. The Uniform Data System for Medical Rehabilitation was established in 1989 to introduce the importance of large data for practice and research. There are data science implications for research and practice on the individual/patient, facility/system, and population health levels. Several examples highlight the power of data science research.
Data science resources that are specific to rehabilitation research include the Center for Large Data Research and Data Sharing in Rehabilitation and the Archive of Data on Disability to Enable Policy and Research .
Looking ahead, artificial intelligence and deep medicine are factors that are beginning to play a larger role in data science.
When a Board member asked him to comment on how best to make a strong connection between research and practice, Dr. Ottenbacher responded by saying that good research ideas will get funded. He encouraged the group to pursue research projects that have been defined by constituents as being important (e.g., those noted in the Improving Medicare Post-Acute Care Transformation Act) or those that may have a major impact on payment-related outcomes. He encouraged others to find ways to make connections between their areas of interest and available funding opportunities.
Comments from Retiring Members
Dr. Nitkin officially thanked Dr. Ottenbacher for the outstanding, quiet, and gracious work that he has done on the NABMRR Board and for the greater rehabilitation research community. He said that Dr. Ottenbacher was responsible for creating an infrastructure network to help people connect to large-data and health services research. He has also led a career development network to support rehabilitation therapists building research careers. Along with being awarded multiple NIH grants, Dr. Ottenbacher has served as a role model and mentor to countless individuals.
Dr. Ottenbacher thanked Dr. Nitkin and shared some kind words about their ongoing professional association. He commented that the process of saying “goodbye or farewell” was changing because of the COVID-19 pandemic. The pandemic has changed how people sign off in emails with added creativity and uncertainty. Rather than thinking about endings, he prefers the way that James Joyce wrote in the novel Finnegan’s Wake, which ended in the middle of a sentence. It does not end. The story continues at the discretion of the reader. So, Dr. Ottenbacher concluded, this is not an end; it is a continuation. Board members expressed their good wishes to Dr. Ottenbacher.
Dr. Nitkin said that although Richard Ellenson could not attend the last couple of meetings due to a shift in family commitments, his success in the business and advertising worlds and his personal connection with cerebral palsy have helped build support for rehabilitation for kids with disabilities. He also helped NICHD with strategic planning and rebranding efforts. Dr. Nitkin relayed the message that Richard conveyed his appreciation to the Board for the connections made and the work being done. He encouraged the others to continue to tell their stories of helping people with disabilities and understanding their needs.
Final Summary and Planning for the Next Meeting
Edelle C. Field-Fote, PT, Ph.D., Chair
Dr. Field-Fote asked the Board members to suggest topics for the next Board meeting in December. Board members suggested a discussion of telerehabilitation approaches and special opportunities to support people with disabilities, especially with the onset of the COVID pandemic. The discussion could include advances in technology that overcome barriers to access and strategies to promote therapies and health from a distance. There is also the continued need to manage potential secondary conditions and promote subject safety. The Board suggested the discussion should include the perspectives of the patients, families, and providers, which may not always be congruent. Another Board member noted that COVID exposure is resulting in an increase of individuals with chronic conditions and impairments. A related issue is how research designs have been altered during this time and the potential effect on data integrity. The Board should not lose focus on how certain minority populations may be uniquely affected by disabilities issues and health support during COVID pandemic.
Dr. Field-Fote thanked the Board members for engaging in this virtual meeting. The meeting was adjourned at 2:00 pm.