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
Members Present
Kimberly Anderson Martha Banks John Chae J. Michael Dean Pamela Duncan Alexandra Enders |
Lynn Gerber Richard Greenwald Joy Hammel Dennis Hogan George Kraft James Rimmer |
Linda Robinson Leslie Gonzalez Rothi Marcia Scherer Denise Tate Gale Whiteneck Steven Wolf |
Members Absent
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.
RECAP OF RESEARCH OPPORTUNITIES
- 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.
SYNERGIES WITH THE NATIONAL INSTITUTE OF AGING (NIA)
ELECTION OF NEXT CHAIR-ELECT
REPORT FROM THE NCMRR DIRECTOR
REPORT FROM THE NICHD DIRECTOR
ENHANCING PEER REVIEW PRESENTATION
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 Chair, NABMRR |