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)
May 3-4, 2010
Dr. Joy Hammel, Board Chair, called the 40th meeting of the NABMRR to order at 9:10 am. Minutes from the previous meeting were approved.
Future Board Meetings
December 6-7, 2010
May 5-6, 2011
December 5-6, 2011
J. Michael Dean
Leslie Gonzalez Rothi
J. Michael Dean
Ex-Officio Members Present
|Daofen Chen, NINDS
Alan Guttmacher, NICHD
|Michael Fox, CDC
Lyndon Joseph, NIA
|Michael Weinrich, NICHD
Lana Shekim, NIDCD
Ex-Officio Members Absent
|Ted A. Conway, NSF
Patricia Dorn, VA
|Suzanne Goldberg, NHLBI
Martin Gould, NCD
|Art Sherwood, NIDRR
Joan Wasserman, NINR
NICHD Staff and Visitors
|Beth Ansel, NICHD
Theresa Cruz, NICHD
Tammara Jenkins, NICHD
Lisa Kaeser, NICHD
Chanya Liv, NICHD
Sharon Miller, CMS
|Ralph Nitkin, NICHD
Jo Pelham, CSR
Louis Quatrano, NICHD
Beth Rasch, CC/RMD
Mary Rodgers, NIBIB
Susanne Seagrave, CMS
|Carol Sheredos, NICHD
Nate Thomas, APTA
Peter Thomas, PPSV
Biao Tian, CSR
Janice Wahlmann, NICHD
Al Wigmore, NICHD
DAY ONE – MONDAY, MAY 3, 2010
INTRODUCTIONS OF BOARD MEMBERS AND GUESTS
The meeting opened with introductions of Board Members and guests. The Board and NCMRR staff then engaged in a lively discussion of the role and charge of the NABMRR. The board expressed a desire to clearly establish the NCMRR as the leader in medical rehabilitation both at the NIH and across the federal government as mandated in Public Law 101-613 () (PDF - 307 KB). The Board recognized the difficulties in executing this directive and a research plan in the absence of a defined budget for the NCMRR. Because center-specific budgets are uncommon, NCMRR staff identified other ways in which the Board’s expertise might be utilized. For example, the Board could be a major contributor to the visioning process for the NICHD, a process that Acting Director Dr. Alan Guttmacher and Institute staff will begin shortly. NCMRR staff also suggested that the Board could contribute their expertise to the NIH fingerprinting effort, which extracts from the text a set of concepts using a domain-specific taxonomy, in defining medical rehabilitation for the Research, Condition, Disease Category (RCDC) classification system. The Board encouraged the NCMRR to continue collaborating with other federal agencies, such as the National Institute for Disability and Rehabilitation Research (NIDRR), the Centers for Disease Control and Prevention (CDC), the Agency for Healthcare Research and Quality (AHRQ), and the Centers for Medicare and Medicaid Services (CMS), as the needs of the rehabilitation community extend beyond the mission of the NIH.
In honor of the upcoming 20th anniversary of the NCMRR, the Board discussed the possibility of a two-day workshop in conjunction with the December 2010 NABMRR meeting. Tentatively, Day One could acknowledge and celebrate the past accomplishments of NCMRR grantees, and Day Two could focus on future research directions for rehabilitation.
The Board cited three reasons for the NCMRR to lead the effort for increased visibility of rehabilitation research at this time: 1) the aging U.S. population, in which people are aging "with disability" and "into disability"; 2) the recently passed Patient Protection and Affordable Care Act (P.L. 111-148) and Health Care and Education Reconciliation Act (P.L. 111-152), known as Healthcare Reform, which emphasize comparative effectiveness research and development of best practices; and 3) the emergence of rehabilitation as a credible research field.
- Within the area of outcomes research, there was a need to harmonize measures and develop a common language appropriate for multiple environments, including home and community. These measures could focus on outcomes that are not just measurable but also important, durable, and sustainable; impact participation; and reflect patient-centered goals. Research in this area could include issues of psychometrics, validation, predictive value, and reimbursement.
- Another major research focus is on assistive devices, including studies of the physical interfaces, controller inputs, sensory feedback, patient acceptance and ease of use, responsiveness and adaptability to patients’ needs and environment, and potential for commercialization and sustainability.
- Genomic factors may play a role in understanding: differences in physiological responses; neurotransmitter function; diet, metabolic, and drug responses; onset of secondary conditions; and behavioral and psychosocial predictors.
- Pain and fatigue remain important and under-investigated areas of research for medical rehabilitation, as is the need to develop better prognostic and surrogate measures to prioritize therapies and monitor progress.
- Health disparities exist with respect to access to women’s health care, racial/ethnic barriers, attitudinal barriers, and even physical barriers to health access.
- Behavioral and psychosocial factors needing further investigation include: strategies for promoting healthy behaviors and compliance; behavior modification and adaptation; understanding patient needs and their evolution with time; the interaction of patient with family, caretaker, and community; and the impact of behaviors on participation.
- Key issues in study design include defining and isolating the "active component," accounting for environmental factors, comparative effectiveness research, promoting trials and infrastructure needs, and documenting current practice outcomes.
- Research in neuroplasticity and learning could include identifying: substrates, mechanisms, and modulators; biomarkers and surrogate measures; learning versus re-learning; and mechanistic differences across motor, sensory, and cognitive systems.
Dr. Lyndon Joseph from the Geriatrics Branch of the NIA Division of Geriatrics and Clinical Gerontology gave a presentation highlighting the rehabilitation work sponsored by the NIA. Dr. Joseph highlighted the research paradigm of using rehabilitation to promote usual or successful aging, despite pathological health conditions. The NIA established the Claude D. Pepper Older Americans Independence Centers to provide research infrastructure for the study of geriatrics. Research conducted at these centers has significant applications to people with disabilities; this includes training strategies for gait, balance, stroke, frailty, and strength. The NIA also funds training and research grants in rehabilitation and often shares assignment with NCMRR research applications. The NIA currently has three Program Announcements (PAs) applicable to the rehabilitation community: PA-10-42 Critical Illness and Injury in Aging; PA-09-193 Mechanisms, Measurement, and Management of Pain in Aging: From Molecular to Clinical; and PA-09-190 Bioenergetics, Fatigability, and Activity Limitations in Aging.
At the end of this meeting, Dr. Joy Hammel will finish her term as chair, and Dr. Kimberly Anderson will move up from chair-elect to chair. Elections were held to determine the next chair-elect. Dr. John Chae was elected by unanimous vote. Dr. Chae will also serve as the NABMRR liaison to the National Advisory Child health and Human Development (NACHHD) Council, replacing Dr. Steve Wolf, who was also finishing his term on the NABMRR.
Dr. Michael Weinrich described the administrative state of the NCMRR, provided American Recovery and Reinvestment Act updates, and reported funding levels for fiscal year 2010. He then gave a preview of his upcoming report to the NACHHD Council scheduled for June 3, 2010, in order to get feedback from the Board. He started by providing some historical context, including increases in life expectancy, higher numbers of people who survive serious illnesses and disease, and the disproportional focus of health care expenditures on people with chronic disease and functional limitations. Changes in federal reimbursement policy have led to a tremendous growth in rehabilitation providers over the last 30 years, and to an increase in the number of federal agencies supporting rehabilitation research (e.g., NIDRR, Veterans Administration, CDC, NCMRR, and the National Science Foundation). Although medical rehabilitation is a relatively young field without a long tradition of research, Dr. Weinrich highlighted the rapid growth in NCMRR funding during its initial decade within the NICHD; he noted that this growth allowed the NCMRR to support clinical trials in constraint-induced movement therapy for stroke patients, bodyweight-supported treadmill-training for gait training in spinal cord injury, reduction of sepsis in the pediatric intensive care units, and treatment of depression and other outcomes in traumatic brain injury. He also mentioned some exciting studies which involve neural interfaces to improve function for severely paralyzed patients, targeted-muscle reinnervation for improving prosthetic-arm control, and innovative wheelchair designs to promote access. He indicated that several challenges and opportunities remain for medical rehabilitation research to move rehabilitation into routine medical practice, move results of research into practice, move rehabilitation into home and community settings, and move contemporary science into rehabilitation.
The Board made several suggestions for the presentation to the NACHHD Council, including: highlighting the need for greater communication between basic and clinical researchers, particularly with regards to the inclusion of functional measures to pharmacological interventions; emphasizing the trans-disciplinary nature of rehabilitation, specifically the interaction of physical, mental, behavioral, social, and environmental factors; and outlining the consequences of pediatric injury and aging with a disability. The Board also encouraged Dr. Weinrich to describe a specific patient population that has benefited from rehabilitation research.
Prior to the Director’s report, Dr. John Chae delivered a brief presentation to Dr. Alan Guttmacher, the NICHD Acting Director, recapping the Board’s morning discussions. Dr. Chae reiterated that the Board would like the NCMRR to emerge as the leader and key advocate for rehabilitation research at the NIH and across the federal government, emphasizing the need for evidence-based practice in the post-acute care rehabilitation model. To achieve this goal, the Board suggested that the NCMRR re-evaluate and publicize a strategic plan for medical rehabilitation research, and that the NICHD set aside specific resources to execute this plan. Dr. Guttmacher welcomed input from the Board and noted its feedback was particularly timely with the broader NICHD visioning processes.
Dr. Guttmacher went on to provide a brief update on Institute and NIH activities as part of his Director’s report. With respect to the search for a permanent Director of the NICHD, the announcement closed in February, and the search committee was expected to submit a short list of candidates to NIH Director Dr. Francis Collins in the near future. After Dr. Collins makes his selection, the candidate would be vetted by the U.S. Department of Health and Human Services. At the earliest, the new NICHD Director could take office July 1, 2010; however, this process may take considerably longer.
At the time of the meeting, Congress was not expected to reach consensus on the fiscal year 2011 budget prior to the October 1, 2010, start date, meaning that the NIH would likely operate on a continuing resolution. Dr. Collins requested a budget increase of 3.2 percent for the NIH, including a 3.0 percent increase for the NICHD. Dr. Guttmacher described the NIH Director’s five research themes: applying genomics and other high throughput technologies, translating basic science discoveries into new and better treatments, using science to enable health care reform, focusing on global health, and reinvigorating the biomedical research community.
Dr. Guttmacher indicated that the NICHD was embarking on an exciting time of self reflection and strategic visioning. Beginning soon, the NICHD Acting Director and staff, in conjunction with outside advisors, would outline a new scientific vision for the Institute. Once research opportunities within this vision were identified, the (Acting) Director and staff would align the funding opportunities and programs according to these scientific priorities. The NABMRR was encouraged to participate in this year-long process. Dr. Guttmacher suggested that the plans for a 20-year NCMRR retrospective and planning meeting be organized in conjunction with the larger NICHD visioning process. In particular, he suggested that the Board arrange a meeting with the new NICHD Director when he or she is appointed. Dr. Guttmacher also indicated that it was not appropriate for the NICHD to provide specific center or branch budgets, as the Board had suggested. NIH policy was to fund research areas with the most scientific promise (as reflected by peer-review scores) and reduce undue influence by special interest groups.
Dr. Theresa Cruz informed the Board of major changes to NIH application and peer-review processes that took place during the past 18 months. These changes are described in more detail at the NIH Enhancing Peer Review Web site. In particular: the opportunity for a second revision of a grant application was eliminated; R01 applications from "New Investigators" would be given special considerations; a new scoring system and more focused evaluation criteria were implemented; and the grant application format was realigned to significantly reduce page limits. In general, these changes were designed to provide more focus on overall scientific impact and increased transparency during review. Dr. Cruz described the particular impact of these changes on NCMRR applications, in so far as they could be assessed at the time. In the first year of these changes, applications to the NCMRR generally maintained a similar success rate as those to the rest of the NICHD (R01 success rates were slightly lower, but the initial sample size was small). NCMRR Staff would continue to monitor the success of applications under the new review and scoring criteria. Dr. Cruz also provided a snapshot of the professional backgrounds of researchers whose applications were assigned to the NCMRR and the areas of research involved.
DAY TWO – TUESDAY, MAY 4, 2010
REVIEW AND WRAP-UP OF PREVIOUS DAY’S DISCUSSION
Prior to the formal start of the meeting, the Board met in executive session. Dr. John Chae presented the Board’s review and future plans. The Board indicated that it would like to review and update the NCMRR Research Plan (http://www.nichd.nih.gov/publications/pubs/upload/plan.pdf) (PDF - 222 KB). Members would also like to receive the minutes from meetings of the Trans-NIH Coordinating Committee on Rehabilitation. The Board also wanted a clearer definition on the NCMRR’s charge to "coordinate" rehabilitation research across the NIH.
EXPLORING THE CONTINUUM BETWEEN RESEARCH AND BEST-PRACTICE IN REHABILITATION: STROKE AS A MODEL DIAGNOSIS
Drs. Steve Wolf and Pamela Duncan presented their vision for a coordinated paradigm in stroke rehabilitation. Given the amount of successful research in stroke rehabilitation, the field is now ready to move toward developing best practices and standards of care. This endeavor, however, is not limited to investigator-initiated research projects sponsored by the NIH; it encompasses a large number of federal and private partners. There is a need to bring payers, clinicians, researchers, community resources, accreditation boards, and patients together to translate research findings into beneficial and sustainable patient outcomes. Drs. Wolf and Duncan suggested the formation of a network of NIH stroke centers, similar to those in Canada, the United Kingdom, and Australia, as the focal point of this system-of-care paradigm.
They noted that a practical difficulty in translating research outcomes to practice is the constraints of reimbursement. In the ensuing discussion, representatives from the CMS expressed a desire to partner with NIH researchers in order to align payment procedures with therapies proven to show functional improvements in research studies. In the existing care model of stroke, most resources were front loaded to the first four or five days post-stroke. While vast improvements have been made in the acute care of stroke individuals, the connection between this upfront care and long-term functional outcomes has yet to be determined. In addition, the disproportionate focus on upfront care may limit availability of resources for the post-acute phase, despite growing evidence that treatments in this later period can have significant impact in patient outcomes, especially if treatments are provided in adequate dosing and intensity. The bundling of payments may be one solution to this problem. The Board expressed a desire to work with CMS on a model of stroke rehabilitation care that could be expanded to support other conditions in the future.
FAIRWELL TO LEAVING BOARD MEMBERS
Drs. Martha Banks, Richard Greenwald, Joy Hammel, Marcia Scherer, and Steve Wolf were thanked for their contributions to the Board on the occasion of their retirement from NABMRR service. The retiring Board members appreciated the chance to work with NCMRR staff and participate in these discussions and wished the continuing members success in their future endeavors.
Starting in December 2010, the new NABMRR Board Members would include:
- Robert "S.B." Lee, M.D., from Johns Hopkins University in Baltimore, Maryland, is a PM&R physician who focuses on the clinical management and psychosocial support for people with disabilities. He also specializes in overcoming environmental barriers and promoting independence.
- Gary A. Smith, M.D., Dr.Ph., from Ohio State University, has expertise in the fields of pediatrics, emergency medicine, and epidemiology. He specializes in injury prevention for children and adolescents, in particular, consumer product-related injuries and home safety. He is the founder and director of the Center for Injury Research and Policy located in the Research Institute at Nationwide Children’s Hospital.
- Marilyn Hamilton is a small-business entrepreneur in California specializing in wheelchair design. She is an advocate for sports and recreation for people with disabilities. She is also a two-time U.S. Open tennis champion and a two-time paralympic silver medalist in snow skiing.
- David C. Good, M.D. is a stroke neurologist and neurorehabilitation specialist from Pennsylvania State University in Hershey, Pennsylvania. Dr. Good specializes in cortical plasticity, motor learning, and clinical trials. He is a journal editor, NIH grantee, and has served the NICHD as a peer reviewer.
- Carol Y. Espy-Wilson, Ph.D., is a Professor in electrical and computer engineering at the University of Maryland, College Park, where she directs the Speech Communication Lab. She is an electrical engineer with research interests in speech and language, communication disorders, speech recognition, and acoustic analysis. She is an NIH grantee and has served on peer-reviewer panels.
FUTURE MEETING TOPICS
Several future meeting topics were suggested. The Board indicated that it would like to take an active role in the strategic vision process for both the NICHD and the NCMRR. Members wanted to be kept abreast of NCMRR activities so they could provide timely feedback between the semi-annual Board meetings. The Board also wanted to maintain a dialogue with the CMS, especially to highlight the potential functional benefits of rehabilitation paradigms not currently reimbursed by the CMS. The next meeting will be held on December 6-7, 2010.
Meeting was officially adjourned at 12:00 pm.
Ralph M. Nitkin, Ph.D. Date
Executive Secretary, NABMRR
Joy Hammel, Ph.D. Date