Dr. Meredith Harris, Board Chair, called the 30th meeting of the NABMRR to order at 8:35 a.m. Minutes from the previous meeting were approved.
May 2-3, 2005December 1-2, 2005May 4-5, 2006
Duane Alexander, NICHDDaofen Chen, NINDSGilbert Devey, NSF
Robert Jaeger, NIDRRNaomi Kleitman, NINDSRoger Miller, NIDCD
Anne O'Mara, NCIJames Panagis, NIAMSClaudette Varricchio, NINR
Kristy AlstonBeth AnselLaurie BlairMel CarterMarc Goldstein
Lisa KaeserAnne KreyCarol NicholsonRalph NitkinJo Pelham
As discussed in previous meetings, each Board member connects to multiple constituencies through their professional and personal networks providing special opportunities to promote medical rehabilitation research and the activities of the NCMRR. At this point in the meeting, Board members provided updates on their outside efforts to promote these goals, a discussion that was especially useful to the five new Board members who began their terms at this meeting.
Gail Gamble is working with the American Academy of Physical Medicine and Rehabilitation (AAPMR) to develop a joint research summit on building research capacity (April 2005). She also invited Michael Weinrich to the AAPMR meetings and facilitated a meeting between the AAPMR and Duane Alexander, NICHD director. She is also working on a conference to address musculoskeletal issues in rehabilitation.
Marca Sipski started a Physical Medical and Rehabilitation (PM&R) department at the University of Miami, the first such department in the state. Through the National Institute on Disability and Rehabilitation Research (NIDRR) model systems program, she is developing a state-of-the-science conference on spinal cord injury (SCI). She is also working with the Veterans Administration (VA) on functional recovery in SCI. As president-elect of the American Spinal Injury Association (ASIA), she is working to promote translational research and develop ASIA standards for autonomic function.
As former director of the National Institute of Nursing Research and current dean at the University of Michigan, Ada Sue Hinshaw continues her work with nursing organizations to develop a professional agenda involving health-services research and patient outcomes. She is also working with the Institute of Medicine (IOM) on the assessment of biomedical and personal health needs, and on the role of nursing professionals in medical rehabilitation.
Audrey Holland continues her work on outcomes in speech and language pathology, including script training and automated procedures for aphasia treatment. She will make a presentation on speech and language rehabilitation at the next Board meeting. She also serves as a special representative to the American Speech Language Hearing Association (ASHA).
John Kemp works as a consumer and legal advocate for the disabled, especially in the area of assistive technologies. He is past president of the American Association of Persons with Disabilities (100,000 members strong) and founding organizer of Half-the-Planet, a resource for the disabled. He is also involved in international activities, including an upcoming meeting in April meeting in Warsaw, Poland, to promote accessibility.
Ken Viste is the past president of the American Academy of Neurology and current chair of its foundation, which raises money for clinical research fellowships.
Meredith Harris is studying postural control in the elderly and health care disparities in physical therapy. She works with the American Physical Therapy Association (APTA) and the American Academy of Physical Therapy (AAPT) to promote new opportunities for physical therapy researchers. She has also worked with the APTA to help identify impediments to research success for physical therapists. Meredith started another avenue of inquiry in heath disparities, partnering with Boston Medical Center and Boston STEPS (a program funded through the Centers for Disease Control and Prevention [CDC] and Boston Public Health Commission) to address intervention strategies for overweight children and teens.
Regino Perez-Polo is involved with the SCI consortium in Galveston. Although his own research primarily involves animal models, he seeks to promote translational research opportunities. He has become more involved in molecular, physiological outcomes of behavioral interventions in perinatal ischemia and child burn victims.
Lawrence Becker works in the ethics and social policy area of disabilities. He is the vice president of Post Polio International and works with their research wing. His current research examines the concept of health and connections to positive psychology.
Alan Jette works on disability and functional outcomes, especially in rehabilitation and post-acute care. He is actively involved in building research capacity in the rehabilitation profession and is acting editor of Physical Therapy.
Alberto Esquenazi is involved in national and international efforts with the PM&R profession. His own work focuses on movement assessment analysis and artificial limbs, as well as clinical administrative roles.
Murray Goldstein, former director of the National Institute for Neurological Disorders and Stroke (NINDS), is interested in cerebral vascular disease and is. Currently, he is director of research and education at the United Cerebral Palsy Foundation, which maintains a relatively rapid process for evaluating and supporting pilot research projects. He is active in promoting governmental and private-sector collaborations, including an interesting project that brings together Israeli and Palestinian collaborators to facilitate reintegration of children with cerebral palsy.
Diana Cardenas is the chief of service in the Department of Rehabilitation Medicine at the University of Washington (UW). She participated in the IOM project, Enabling America: Assessing the Role of Rehabilitation Science and Engineering and is currently serving on the IOM Committee on Improving the Disability Decision Process: Social Security Administration's Listing of Impairments and Agency Access to Medical Expertise. Her own research focuses on preventing urinary tract infections in SCI (funded by the NIDRR) and neuropathic pain in SCI (funded by the NCMRR), and she directs the UW's Model SCI System grant.
Zev Rymer is very active in developing and nurturing research talent. He is principal investigator of one of the four NCMRR regional research networks. He directs a broad research program in neuroscience and engineering, with particular focus on brain implants for stroke.
Rory Cooper is department chair and head of a VA rehabilitation research center. In his role as president of Rehabilitation Engineering Society of North America (RESNA), he promotes research priorities particularly in the area of secondary disabilities in SCI and brain injury. He is also active in the training of physiatrists and engineers. He is working on a joint RESNA-NCMRR workshop on rehabilitation engineering and is writing articles for the RESNA journal to promote research.
Ken Giacin comes to rehabilitation from a business background. He continues to work with Johnson & Johnson on strategic planning and emerging technologies, especially in the area of disabilities. He founded a small start-up company called Independence Technology and is currently promoting opportunities in stem-cell technology, especially for cancer treatment.
Sue Swenson is heavily involved in advocacy and federal support of families of children with developmental disabilities. She is interested in the economic impact of dealing with disabilities and how particular policies impact people with disabilities.
According to Dr. Michael Weinrich, this year has been challenging for the NCMRR and the NIH in general. Federal policies to centralize and increase efficiency impacted significantly on NIH support staff and administrative functions. The NICHD budget increased by only two percent and, given ongoing commitments to major research projects and the inherent escalation in research costs, this situation severely constrained opportunities for new initiatives across the Institute. Nonetheless, the NCMRR rehabilitation regional networks will be renewed (recompeted) with funding for about four or five centers, as will the rehabilitation medicine scientist K12 training program. The NCMRR is trying to develop an electronic newsletter to promote medical rehabilitation and highlight federal support of research activities and would appreciate input and suggestions from Board members.
Dr. Weinrich noted that NCMRR staff participates in several federal activities. Within the NIH, the NCMRR takes an active role in the neuroprosthesis program along with the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institute of Biomedical Imaging and Bioengineering (NIBIB). Louis Quatrano is doing a part-time detail with Dr. Margaret Giannini in the U.S. Department of Health and Human Services (DHHS) Office of Disability Policy to help with data management and other rehabilitation projects. Carol Nicholson is developing collaborations with the CDC and Walter Reed Army Medical Center in the area of pediatric rehabilitation and critical care. The Interagency Committee on Disability Research is working to promote longitudinal studies and will be presenting a report shortly. The NICHD intramural program is establishing collaborations with stroke rehabilitation scientists in the Italian National Institute of Health (ISS, or Istituto Superiore di Sanità). The NCMRR is working with the NINDS and the National Multiple Sclerosis Society to identify barriers to research on multiple sclerosis and related disorders. The NCMRR is also working with the Centers for Medicare and Medicare Services (CMS) to hold a conference on the diagnostic classification of patients admitted to rehabilitation facilities to identify which patients most benefit from rehabilitation services. The NCMRR-CMS conference will be invitation only, and will include representatives from industry, consumer groups, and professional organizations. A new report on disabilities in America will be published by the IOM in the near future.
In fiscal year 2004, NCMRR research support increased by only 1.3 percent with a concomitant increase in the number of grants funded. Although this increase was only slightly below the NICHD overall average, it was a reflection of the tight paylines across the Institute and the NIH in general. Currently, about half of NCMRR funding is in investigator-initiated grants (e.g., R01s), including significant support of Small Business Innovative Research (SBIR) and Technology Transfer Research (STTR) grants that support technology development and assistive technologies. The NCMRR is also funding a clinical trials network in traumatic brain injury and will soon be initiating a network in pediatric critical care. The Center is also supporting regional research infrastructure networks and national career development programs for clinicians both in PM&R and in pediatric critical care. Although investigator-initiated funding lines remained tight, the NCMRR worked with the NICHD to increase relative support for R03 pilot grants in an effort to help new investigators.
Although 71 percent of NCMRR funds were committed to ongoing projects in the current fiscal year, the remaining 29 percent went to newly competed grant proposals (including 7 percent to established projects that were successfully renewed). This represents a healthy turn over in the Center research portfolio as well as the active success of rehabilitation researchers in the very competitive environment of NIH peer review. The Advisory Board expressed interest in the relative success of NCMRR applications by discipline and in the balance between on-going projects and opportunities for new investigators. It was also interested in the potential for leveraging research funds from other agencies and from industry. It asked about the role of strategic planning and how particular research initiatives have paid off for the Center. These topics will become the basis for a more detailed discussion at a future Board meeting, once NCMRR staff prepares the relevant information.
Dr. Duane Alexander welcomed the new Advisory Board members and thanked the Board for its continued help in shaping rehabilitation programs within the Institute. He noted that at this point the NICHD did not have an official budget for the current fiscal year (2005), but added that he did not expect significant increases over the previous year's levels. This will have unfortunate consequences for the biomedical enterprise, especially for young people just beginning careers in biomedical research. In fiscal year 2004, the NICHD got about a 3 percent increase bringing the annual Institute appropriation to $1.24 billion. For the current fiscal year, the House and Senate were discussing an overall increase of $3.9 million, but this amount would be offset by a 0.8 percent across-the-board reduction in NIH Institute budgets. For the NICHD, this will result in an appropriation of about $1.265 to 1.27 billion in fiscal year 2005. Planning for the fiscal year 2006 budget was already underway; initial dollar projections would be available in February. Each Institute will continue to contribute 0.3 percent of its budget to NIH Roadmap activities, whose goals include overcoming obstacles to collaboration and encouraging clinical research.
NICHD programs will undergo more formal strategic planning processes with the involvement of the scientific community and advocacy groups. Although each program prepared periodic reports to the National Advisory Child Health and Human development (NACHHD) Council, they will now be called upon to provide biennial updates on progress toward achieving stated research goals. With more limited resources, strategic planning was even more critical at the NIH, as was the need for more precise research goals and outcomes.
The Board asked Dr. Alexander to discuss his vision for the NCMRR. He indicated that a primary function of the NCMRR is the recruitment of well-trained investigators. He went on to discuss improved evaluation of rehabilitation interventions, development of new technologies and assistive devices, support of clinical trials, and investment in biotechnology. The Board asked about the many anxious families who were pursing "alternative" treatments. Dr. Alexander acknowledged that this trend was most prevalent in areas where traditional medicine had least to offer (e.g., advanced cancer), but tended to diminish as treatments and options improved. Currently, families of children with developmental disabilities (e.g., autism, cerebral palsy, reading disabilities) were most likely to seek alternative treatments. The Board discussed with Dr. Alexander the tension between the traditional medical model of seeking "the cure" versus rehabilitative support of accommodation and adjustment. Another issue raised was the problem of "marketing" clinical trials to families of children with developmental disabilities.
The Board asked how the will NICHD continue to support new investigators in this period of reduced resources and would this support require a paradigm shift. Dr. Alexander reminded the Board that the overall NIH budget is $28 billion, and that about one-third of the ongoing research portfolio turns over each year. Nonetheless, he indicated a need to select opportunities carefully and sharpen the peer-review process, especially with respect to judgments right around the funding lines. The NICHD remained committed to new investigators throughout this process. He noted that research has become so sophisticated that is no longer a part-time career for clinicians; but as a result, the scientific community has bred a generation of superbly trained researchers. The Board asked Dr. Alexander what he will do with the strategic planning recommendations of the Board and NCMRR constituents. He indicated that a small number of priorities across the Institute will be forwarded to the NACHHD Council for further evaluation. These priorities will be used to help justify decisions right around the margins of funding. Priorities will probably not be reevaluated every year, but as part of the Government Performance and Results Act, the Office of Management and Budget was holding federal agencies more accountable for their progress and outcomes.
The majority of the afternoon was set aside for strategic planning activities to help the NCMRR identify specific short-term research goals and opportunities, as was discussed in materials distributed prior to the meeting. Three break-out groups of Board members and expert visitors were formed to facilitate brainstorming. At the end of the afternoon, each group reported back to the full Board with specific recommendations and opportunities.
The first group recommended support of research in: biological basis of rehabilitation (including influence of gender, genetics, and ethnicity); artificial intelligence, robotics, and telemedicine; neural-prosthetic interfaces; advanced assistive technologies; clinical trials to promote novel rehab interventions; osteo-integration and nanotechnology to build devices that integrate with dysfunctional tissue; and research on outcomes and quality-of-life measures. The group supported the use of: three-year center planning grants; national training K12 program for rehabilitation engineers; workshops focused on new and emerging technologies; more R24 infrastructure grants; and collaborative clinical trials to determine optimal intensity, duration, and content of rehabilitative therapies, as well as the optimal target populations.
The second group focused on: plastically, adaptation, and accommodation; translational research; medical intervention to sustain life; epidemiology prior to rehabilitation; and needs assessment, with a focus on the person and quality of life. Priorities include: translating emerging knowledge from basic sciences into implementation; technology and research and development that leads to evidence-based interventions and accommodations; qualitative and quantitative evaluation of therapeutic interventions (e.g., duration and frequency); and improving the practice of rehabilitation medicine. The group also noted opportunities in stem-cell technology and outcomes research (e.g., defining positive health and wellness). Members encouraged collaborations with other parts of the NIH (e.g., pediatrics, stroke, cancer treatment) to extend outcomes through rehabilitation and participation. They recommended the continued support of investigator-initiated research and encouraged the NCMRR to evaluate the success of ongoing programs and research initiatives.
The third group felt that rehabilitation research was grounded in studies of: adaptation and plasticity at the level of cells, organs and systems; approaches that go beyond healing and reversal of injury; and studies of retraining reflex functions. Research goals include: reconciling outcomes between bench science and clinical studies; examining quality-of-life and impact on families; secondary effects of impairment/disabilities (e.g., weaning SCI patients, positive psychosocial impact, breaking out of the spiral of cumulative illness and disability); and long-term management of chronic disabilities and conditions (including pressure sores, effects of long-term drug/narcotic use, inactivity, and obesity). The group recommended conferences on universal design for learning, family and support systems, contrasting the medical model with the social/minority model, and outcome measures.
The Board went on to discuss the long-term growth of the NCMRR. In the initial decade and a half, most of the growth occurred through an increase in successful investigator-initiated proposals. As an emerging field of research, the transition from smaller studies (e.g., R03 or R21s) to larger R01 grants is crucial. The Board also touched on the relative merits of remaining part of a larger NIH Institute (NICHD) versus being promoted to a free-standing entity perhaps at the Institute level. Clearly, this would depend on the development of a critical mass of investigators and research opportunities, as well as on additional allocations of resources and administrative infrastructure. While it is unusual for a Center within a larger institute to have its own advisory board, this situation may have arisen because the NCMRR was originally modeled as an independent entity that serves unique research and professional domains.
In its current position within the NICHD, NCMRR staff would not advocate for differential paylines across topics or programs, but noted that it may be useful to have some flexibility in prioritizing funding among research mechanisms (e.g., R03/R21 pilot studies versus more mature R01 applications). A related issues was the balance between investigator-initiated grants in general (often considered the life-blood of NIH research) and targeted initiatives (e.g., requests for applications, networks, and other specialized programs). Unfortunately, paylines for investigator-initiated proposals at the NICHD have already dropped to the 14th percentile, leaving little flexibility for other initiatives at this time. Another issue was the maintenance of adequate support for clinical trials in medical rehabilitation, which are often broader and more complex than drug trials because they tend to require multidisciplinary collaborations, more diverse outcome measures, and longitudinal follow-up.
Because most funding at the NIH is driven by peer review, the configuration and expertise of study sections play a crucial role in funding success. The Board recognized the need to take a closer look at the study sections that review applications for the NCMRR to make sure that they are responsive to opportunities and needs of the rehabilitation community. The Board also considered the appropriate balance between basic and applied studies in the field of rehabilitation medicine. Ultimately, they concluded that the NCMRR must promote high-quality proposals in all areas relevant to medical rehabilitation.
Given the unique aspects of rehabilitation research and the need to strengthen the emerging research culture among therapists, clinicians, engineers, and researchers from allied fields, the Board recognized the need to continue supporting investigator-initiated research, but also saw the need for planning grants, technology development, national training programs, research networks, and workshops to promote collaboration. They recommended that the NCMRR evaluate the progress of ongoing programs and research initiatives. As discussed in the strategic planning session, NCMRR priorities continue to center on plasticity, adaptation, accommodation, therapeutic interventions, and short- and long-term outcome measures (with particular interest in biological, racial/ethnic, and ethnic variation).
Dr. Lawrence Becker is a medical ethicist with a particular interest in social policy and disability issues. He presented some historical background about the evolution of the concept of health versus illness and its roots in classic philosophy. He explained that mental health is defined as the absence of mental illness, without a clear attempt to define either concept directly. Dr. Becker pointed out that with the current focus of NIH research, it would be more appropriate to call the NIH it the National Institutes of Disease.
Although there is rough agreement on what constitutes a "bad" life (e.g., pain suffering, negative emotions), there is less agreement on positive attributes of life and the terminology often defaults into religious and spiritual language. Traditionally, physical health was defined by the absence of certain negative symptoms. But in the last few decades, there had been a concerted effort to develop a positive definition of health and its attributes. Currently there are six competing models of positive health, which are based on concepts such as being above normal, character strengths and core virtues, developmental maturity, social-emotional intelligence, subjective well-being, and resilience. But these concepts define health in philosophical rather than empirical terms. Dr. Becker suggested the need for a consensus on the concept of positive psychological health, which could generate testable hypotheses and facilitate biomedical research. Philosophical or theological value judgments are not empirically resolvable. He proposed four levels of psychological health: minimally good, robust, excellent, and ideal. He added that the NIH should develop a consensus on the general concept of mental health, defined positively, to specify the ways in which various research agendas contribute (or not) to these outcomes.
Suggested topics for future Board meetings include how "outcomes" are defined across the NIH, support of clinical trials by the NCMRR, peer review of NCMRR applications, interagency rehabilitation activities, and speech/language rehabilitation strategies. As a follow up to the strategic planning activities, the Board also requested some presentation on success rates of across rehabilitation disciplines, across study sections, and in various grant mechanisms.
The meeting was adjourned at 11:30 a.m.