Summary Minutes - December 3-4, 2001

Dr. Chukuka Enwemeka, Board Chair, called the 24th meeting of the National Advisory Board on Medical Rehabilitation Research to order at 9:00 am. Two new board members, Drs. Lawrence Becker and Patrick Kochanek, were introduced. Hugh Gallagher sent a message that he must resign his seat on the Board for health reasons, but continues to give the NCMRR his full support. Minutes of the previous meeting were approved.

Future Board Meetings

May 2-3, 2002
December 5-6, 2002
May 1-2, 2003

Members Present

Members Absent

Ex-Officio Members Present

Ex-Officio Members Absent

Invited Speakers/Visitors

NICHD Staff

Visitors

REPORT OF THE NICHD DIRECTOR

Dr. Duane Alexander indicated that because of political uncertainties - heightened by the September 11th tragedies - the National Institutes of Health (NIH) still does not have a budget for the current fiscal year and is operating under a continuing resolution. This situation holds the NIH to fiscal year 2001 spending levels and delays launch of any new initiatives. Nonetheless, the NICHD is going ahead with its research plans within these administrative constraints. Dr. Ruth Kirschstein has done a superb job as acting director of the NIH. NICHD's own Dr. Yvonne Maddox is ably assisting in the position of acting deputy director of the NIH, although she is looking forward to getting back to her full-time responsibilities at the NICHD. Across the NIH, several senior staff positions remain open, especially at the Institute Director level. Currently, all of the four neuroscience-related institutes - National Institute of Neurological Disorders and Stroke, National Institute of Mental Health, National Institute of Drug Abuse, and National Institute on Alcohol Abuse and Alcoholism - are seeking permanent directors. Moreover, the Office of Management and Budget is leading a restructuring effort throughout the Department of Health and Human Services to centralize administrative activities such as budget, public affairs, personnel, grants management, and legislative analysis.

Dr. Alexander provided an update on the NIH loan repayment program, which is a means of encouraging clinically trained individuals to pursue careers in research. For current students, the burden of accumulated loans is an impediment to considering research careers over potentially more lucrative careers in clinical practice. The loan repayment program will provide up to $35,000 per year (plus the corresponding tax liability) to clinical and pediatric investigators who commit to two years of research. Potential researchers can apply to the NIH through an annual competitive process. More information can be found on the NIH home page at http://grants.nih.gov/training/extramural.htm.

The NICHD is leading an effort among 40 agencies to support a national longitudinal study of about 100,000 children to study the influences of the environment on child development. This major research resource will be developed with extensive input from advisory groups. Dr. Peter Scheidt will be leading the effort, although funding support is still being worked out.

REPORT OF THE NCMRR DIRECTOR

Dr. Michael Weinrich discussed efforts to improve the NCMRR Web site. Currently, the Web site includes the 2001 Report to the NICHD Advisory Council on NCMRR Research Activities, Advisory Board activities, abstracts of recent workshops on Mobility and Rehabilitation for Stroke and Hip Fracture, a listing of current NCMRR-funded studies, "frequently asked questions" to aid first-time grant applicants, NCMRR Regional Research Networks, and NCMRR staff contacts.

CURRENT NCMRR RESEARCH INITIAVES AND CONFERENCES

NCMRR staff is currently involved in a range of activities. Carol Sheredos is leading efforts to improve disability access at the NIH and will be developing a report on reasonable accommodation. Dr. Weinrich introduced Dr. Carol Nicholson, who will be starting a NCMRR program on Pediatric Critical Care and Rehabilitation. NCMRR staff reported on current research initiatives, including: pilot studies in pharmacological interventions for pediatric brain injury, planning grants for clinical trials in pediatric rehabilitation, a multicenter network to support clinical trials in traumatic brain injury, rehabilitation for stroke and hip fracture, and augmentative/alternative communication for cognitive-linguistic disorders.

NCMRR RESEARCH REPORT TO THE NICHD ADVISORY COUNCIL

Every few years, NCMRR prepares a report to the NICHD Advisory Council summarizing the Center's activities and highlighting some of the current research programs. NCMRR funding continues to increase at a rate higher than that of the overall Institute, currently topping 200 research grants ($46.1 million). Aside from NCMRR efforts, rehabilitation-relevant research is also supported by other NIH Institutes, and the overall NIH total is over $100 million. About 80 percent of NCMRR funds go to unsolicited, investigator-initiated applications, so as the Center gets more meritorious applications, even more support will go to medical rehabilitation research. The NCMRR also puts a high priority on training and career development. This is done through a two-pronged approach: encouraging rehabilitation-trained individuals to go into research and to attract investigators from allied fields to rehabilitation related issues. The NCMRR Advisory Board encourages the use of visual materials (figures and graphs) as well as biographies of successful rehabilitation researchers. They also encourage the NCMRR to share this material with rehabilitation advocacy groups. NCMRR staff welcome inquiries from interested groups and individuals.

COGNITIVE AND BEHAVIORAL REHABILITATION

Drs. John Whyte and Gary Goldstein discussed some of the cognitive and behavioral issues that affect people with chronic disabilities, especially those issues that prevent these people from fully participating in familial, vocational, educational and other activities.

Dr. Whyte's remarks focused on cognitive deficits resulting from stroke, traumatic brain injury, and multiple sclerosis. Traditionally, these topics were the purview of researchers in the fields of neurodegeneration, neurodevelopment, or learning disabilities, but are only recently coming to the domain of rehabilitation scientists. Key cognitive domains include: attention (both temporal and spatial), memory, language, motor planning, visuospatial perception, and executive function. Deficits in these domains impact significantly on cognition, behavior, overall quality of life, and participation. Cognitive rehabilitation attempts to reinforce, strengthen, reestablish or develop new patterns of activity to help the individual to adapt to their disability. Whenever possible, rehabilitative approaches should involve the family as well as the individual.

Dr. Whyte also discussed some of the methodological challenges to research in cognitive rehabilitation. Researchers are still working out the appropriate cognitive constructs for evaluating adaptation and recovery. Longitudinal studies may be confounded by spontaneous recovery, maturation, degeneration, and practice effects. Depending on the study, subjects may be stratified on the basis of etiology, neuropathology, functional limitation, or other criteria. Dr. Whyte encouraged the use of multiple outcome measures (e.g. not just functional but also disability scales), while being careful to chose those measures that are most appropriate and most responsive to the treatment approach being tested. Current research opportunities include treatment of attention and neglect, language support (including the use of computers), and memory support (including the use of "errorless learning" approaches).

Dr. Goldstein focused on behavioral and emotional issues for persons with disabilities, drawing on the experiences of the Behavioral Psychology Department at the Kennedy Krieger Institute. Attention to behavioral issues is central to successful reintegration of individuals with disabilities into school, home, work, and community environments. Treatments may involve collaborations among behavioral therapists and speech, language, and occupational therapists. Children with traumatic brain injury often have problems with agitation, aggressive behavior, refusal to comply, inattention, and escape attempts. In order to evaluate potential therapeutic interventions, researchers need to identify and somehow quantitate negative behaviors. Behavioral modification attempts to reward consistency and positive behaviors, while not responding to those that are bad or disruptive. Research shows that children do not necessary have to comprehend or even be aware of the treatment in order to respond favorably.

TECHNOLOGY TRANSFER AND ENGINEERING DEVELOPMENT

Dr. Robert Dean provided some personal insight into his experiences as a bioengineer, entrepreneur, and above-the-knee amputee. Currently, there are about 60,000 new amputees per year, 76 percent of these below the knee. In most cases, amputation is a consequence of vascular complications.

In Dr. Dean's opinion, much of the problem with current prosthetic design centers on adjusting to the changing characteristics of the residual limb and alterations in workload. In response to personal problems with prosthetic devices, Dr. Dean developed the "smart variable geometry socket" to respond to changes in the residual limb over the course of the day. A series of water-filled bladders, passive pumps, and valves compensate for daily changes of up to 6 percent change in the residual limb. The conceptualization, development, and commercialization of this device were supported by seven Small Business Innovation Research (SBIR) grants from the NIH and the National Science Foundation. Although it takes significant time to go through the application and review process, the SBIR mechanism is a unique source of support for biomedical engineers and entrepreneurs.

UPDATE ON WEB SITE FOR ENGINEERING SOLUTIONS

Dr. Scott Selbie presented an update on the conceptualization and design of the NCMRR-sponsored Web site for Engineering Solutions. The target community for this Web site includes people with disabilities, engineers, "mom & pop shops", students, entrepreneurs, and support organizations. For example, people with disabilities would come to the Web site to identify needs and products, provide and obtain product feedback, and request customized solutions; engineers would come to promote products, get new ideas, obtain product feedback, and get market information. The Web site would also provide links to potential funding sources for engineering grants and information on compliance with accessibility standards (Sections 508 and 255).

STRATEGIC PLANNING WITHIN NICHD

The NICHD encourages periodic evaluation of research programs and provides special resources to bring in experts as needed. Although the NCMRR has keep current with potential research opportunities and needs in the field of medical rehabilitation, the last formal effort to define a research agenda for the Center was the 1993 Research Plan for the National Center for Medical Rehabilitation Research. While the NCMRR has enjoyed significant growth over the last few years, thanks in part to the support of Dr. Alexander, current fiscal constraints across the NIH make it unlikely that this rate of expansion can continue. The NICHD has become more cautious about supporting very large projects and special initiatives. Dr. Weinrich suggested that the NCMRR consider possible links with other parts of the NICHD, or even across the NIH. The Centers for Disease Control and Prevention also support relevant studies, focusing primarily on prevention issues. Upcoming priorities for the NCMRR could include aging with disabilities and the complications of intensive care. The Advisory Board encouraged the Center to consider the concept of "investing" in people with disabilities and conversely the "cost" of not supporting research on disabilities. This effort represents the beginning of a dialogue between NCMRR staff and the Advisory Board, and will continue at the next Board meeting.

OUTCOMES AND QUALITY OF LIFE ASSESSMENT

Drs. Thomas Strax and Margaret Stineman discussed improved outcome measures and assessment of quality of life, especially those that take into account interactions with environment, culture, economics, insurance, assistance, education, and control. For persons with disabilities, personal control may be one of the most important determinants of overall quality of life. Health care tends to focus on maximizing function, but incentives need to be re-evaluated to consider the impact potential interventions on the lives of persons with disabilities. Persons with disabilities need to be empowered to take more control of their interactions with environment and society, and to seek increased educational and vocational opportunities. Dr. Strax shared some of his early educational and clinical experiences in order to provide insights into overcoming the limiting perceptions of those around us.

Quality of life is inherently a personal issue, and researchers need new ways to evaluate health stature and personal progress that go beyond functional independence measures. Health can be affected by both intrinsic (e.g., body, mind) and extrinsic factors (e.g., physical environment, society). Personal needs, values, and goals should drive rehabilitation priorities, and these may change during the transition from acute treatment to rehabilitation to outpatient support. At times, the perceptions and values of the consumer and rehabilitative clinician may differ, but they must maintain a dialogue of these goals. Dr. Stineman concluded by inviting some members of the Board to participate in a newly developed assessment tool, which was designed to better understand the values and needs of a person with disabilities. Participants were asked to assume that they had minimal functional abilities across all domains, but they could work toward specific goals in either motoric, cognitive, or sociobehavioral domains. Dr. Stineman is using this research tool to compare and contrast perceptions among persons with disabilities, family, clinicians, and other healthcare workers.

DEVELOPING NOMINATIONS FOR FUTURE NCMRR BOARD MEMBERS

Dr. Ralph Nitkin briefly explained the process by which the NCMRR develops nominations for the Advisory Board. The Board comprises 12 members representing health and scientific disciplines related to medical rehabilitation and 6 members representing persons with disabilities. The NCMRR seeks to maintain a balance of perspectives, while working with certain administrative, geographic, and logistical constraints. In an effort to maintain vigorous and effective counsel, the NCMRR welcomes suggestions from current and past Board members, professional and advocacy groups, and other interested parties.

DISCUSSION OF TRAINING AND CURRICULUM DEVELOPMENT

The NCMRR has become increasingly interested in the training and certification of clinicians and other health care providers who support medical rehabilitation. Specifically, the Center is interested in facilitating the translation of research findings into current curricula and practice, and ensuring that graduates are exposed to research methodology and potential careers in research. To stimulate discussion with the Board, a special panel brought in to represent some of the relevant professional interests.

Dr. Becky Craik provided background on current training of physical therapists (PTs). The American Physical Therapy Association (APTA) has become increasingly active in introducing clinicians to new research findings at their national meetings. In 1994, the APTA developed a consensus curriculum for PTs with explicit expectations and outcomes. More recently, the APTA has begun accrediting post-professional training programs. The APTA developed a Guide to PT practice, with specific reference to musculoskeletal, neuromuscular, cardiovascular/pulmonary, and integumentary systems. Starting in 1998, the association began promoting a research agenda based on biological plausibility and evidence-based approaches. The Physical Therapy journal tries to bridge the gap between practice and research, and supports an on-line database of treatment outcomes.

Dr. Hunter Peckham discussed the bioengineering career track. Although medical rehabilitation specialists represent only a small subset of bioengineers, they may progress from a bachelor of science, to master's, to Ph.D. through an engineering core curriculum with a specialization. Undergraduates in biomedical engineering tend to go into graduate school, medical school or industry in about equal percentages. Ph.D. programs involve clinical rotations and visits to rehabilitation-related companies, and encourage interdisciplinary approaches. Graduates have a wide variety of professional options, including academia, industry, hospitals, government, or medicine. Some of the special issues for supporting biomedical engineers involve identifying potential trainees, maintaining an applied clinical focus, providing cross-disciplinary appointments, getting special training in human subjects research, and getting beyond "impairment" measures.

Dr. Florence Clark discussed the role of occupational therapists (OTs) in medical rehabilitation. Because the profession does not yet have a research tradition, trainees sometimes go to allied fields to do research. In 1988, the academic discipline of "occupational science" was founded in order to go beyond the traditional OT focus on daily activities. Research activities are supported through the Journal of Occupational Science, various colloquia and training programs. The American Occupational Therapy Association developed a program of basic competencies and three levels of professional training. According to Dr. Clark, current obstacles for promoting OT research include the paucity of OT researchers as mentors, lack of representation on NIH study sections, and lack of connection between NIH-funded training programs and OT departments.

Dr. Joel Delisa discussed training for doctors of Physical Medicine and Rehabilitation (PM&R). Some key issues include the art versus science or medicine, dissemination versus utilization, and current practice parameters. There are nearly 7000 board-certified physiatrists, with about half emerging in the last decade. However, individual PM&R departments are small and tend to lack the necessary critical mass to support research. PM&R fellowships are only one year and tend to be more focused on clinical rather than research training. Building a research career in additional to clinical responsibilities requires extra commitment from the trainees. The American Council of Graduate Medical Education put forth general core requirements for PM&R, which will improve research capabilities provided they are vigorously enforced. The American Board of Physical Medicine and Rehabilitation offers a time-limited certification, which encourages medical education and incorporates evidence-based practice. About two-thirds of medical schools have PM&R departments, but to stimulate research it is important to incorporate Ph.D. students into these clinical programs. The PM&R community agreed that there is a need to provide incentives to clinicians who pursue research careers, while also supporting research infrastructure, multicenter longitudinal studies, and consensus conferences.

Dr. Lynn Gerber discussed the development of rehabilitation training programs at the NIH. The Department of Rehabilitation Medicine was formed in 1953. Initially it did not have a research or training mission, but brought in occupational therapists, physical therapists, recreational therapists, speech/language pathologists, and other specialists to do research. The Clinical Center has a strong research tradition but no formal training program. Attempts to build a trans-Washington training program in PM&R fell through, although the NIH still collaborates with the National Rehabilitation Hospital. At the NIH, the current focus is to train physicians in PM&R, especially in the middle domains of the NCMRR model (e.g., functional outcomes, impairment, and disability).

In the summer of 2001, Dr. Gerber worked with Dr. Gerben DeJong to sponsor a conference on Building Research Capacity in Rehabilitation Sciences. The goal was to encourage rehabilitation physicians to shift from clinical to more academic pursuits, so that they might become better researchers. The conference came up with the following recommendations: build collaborations among relevant fields; break communication barriers across disparate specialties; encourage translational research; develop the necessary physical and intellectual capital; provide input for policy makers; and evaluate current clinical practice and outcomes.

THE NICHD INTRAMURAL PROGRAM IN REHABITATION

Dr. Gerber discussed the recent formation of the Physical Disabilities Branch in the NIH intramural program. The Branch was established in March 2001 in the Clinical Center with funding from the NICHD in order to improve the lives of persons with physical disabilities. The Branch will develop and disseminate rehabilitation technology through the support of basic and translational research, especially studies on the efficacy of interventions (including clinical trials) and training support. Dr. Steven Stanhope is the Chief of the new Branch, which currently includes labs in Biomechanics and Biomedical Engineering, Oral Motor Function, and Human Movement Disorders, and collaborators in other area institutions.

NEW BUSINESS AND AGENDA FOR NEXT MEETING

The Board wanted to have more time to work with the NCMRR in strategic planning, especially to help identify potential research opportunities and unmet needs for people with disabilities. Rather than formal presentations and informational sessions, the Board wanted to take time out to engage in more substantive discussions and breakout groups. NCMRR staff will provide background material in advance of the May 2002 meeting on current NCMRR and NIH support of medical rehabilitation research. Other potential topics include training and career development and the development of research initiatives within the NICHD.

The meeting was adjourned at 11:15 am.

Respectfully submitted,