Summary Minutes - May 7, 2009

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 May 7, 2009

Dr. Margaret Turk, Board Chair, called the 38th meeting of the NABMRR to order at 1 pm.  Minutes from the previous meeting were approved.

Future Board Meetings

December 7-8, 2009
May 3-4, 2010
December 6-7, 2010

Members Present

Members Absent

Ex-Officio Members Present

Ex-Officio Members Absent

NICHD Staff and Visitors

INTRODUCTIONS AND UPDATE ON MEMBER ACTIVITIES

The meeting opened with brief introductions of Board members; given the more limited format of the virtual meeting, however, members did not provide updates on outside activities relating to the NCMRR or medical rehabilitation research in general.

THE EVOLVING ROLE OF THE BOARD

As a result of budgetary constraints within the NICHD, the use of periodic virtual meetings may be necessary for some of the semiannual Board sessions. It was proposed that the December meetings remain as face-to-face meetings because this is when new Board Members attend orientation; perhaps in future years the May meetings would be held in the virtual format. The Board expressed a desire to continue face-to-face meetings whenever possible. Members cited the importance of non-verbal cues as well as the need to minimize distractions. The Board suggested the possibility of shorter, more focused face-to-face meetings in the future. The use of virtual meetings in addition to face-to-face meetings was also proposed.

The Board stated that its role and influence on NCMRR policy is unclear. Members asked for feedback regarding how their input has helped the NCMRR. Drs. Ralph Nitkin and Michael Weinrich explained that the NCMRR uses input from the Board to refine the mission of the NCMRR and to provide added support for NCMRR initiatives within the NICHD decision-making process. They added that, in terms of grant funding, the NCMRR is largely constrained by peer-review prioritization in determining which proposals get funded. Occasionally, the NCMRR has an opportunity to solicit applications in specific areas through initiatives, such as Program Announcements (PAs), for which no money is set aside, and Requests for Applications (RFAs), for which money is designated by the NICHD Director. The Board felt that it was underutilized with respect to the development of funding opportunities. It was suggested that Board Members should take a role in discussing research needs with the community as a way to stimulate research in needed areas and to support the development of meritorious NIH applications.

The Board added that it wanted to increase communication in between meetings to motivate future agenda items. This communications would help fulfill the goals of the Board. The Board explained that it wanted more “action items” and earlier access to these topics. The Board requested regular updates of resources currently available on the NCMRR Web site, such as current grants, clinical trial networks, research infrastructure grants, training and career development opportunities, and rehabilitation workshops and meetings, and suggested receiving these updates via e-mail. A bulleted format was preferred. In particular, the Board indicated that it wanted to know the number of grants and the funding amounts awarded after each grant cycle, organized by research topic.

The Board was updated on the Comparative Effective Research (CER) Initiative at the NIH. Because she had served on a special panel to advise the NIH on CER, Dr. Margaret Turk provided some input. She explained that the NIH has received new funds for fiscal year 2009 and fiscal year 2010 as part of the American Recovery and Reinvestment Act of 2009 (ARRA). Of these funds, $400 million was designated for CER, which involves the conduct, support, or synthesis of research that compares the clinical outcomes, effectiveness, and appropriateness of items, services, and procedures that are used to prevent, diagnose, or treat diseases, disorders, and other health conditions. CER uses a variety of data sources and methodologies, including patient registries, clinical data networks, pragmatic clinical trials, decision analyses, and meta-analyses to produce rigorous and valid evaluations. Following congressional testimony by Board members Dr. Turk, Dr. Lisa Iezzoni, and others, disability research was highlighted as a CER priority. Dr. Turk indicated that she would follow up with an e-mail to the Board with details for grant applications.

THE NCMRR AS LIAISON BETWEEN BASIC RESEARCHERS AND REHABILITATION CLINICIANS

It was proposed to the Board that the NCMRR could act as a “matchmaker” between basic science researchers, who are in the process of drafting grants, and rehabilitation clinicians with expertise in the ecological validity of interventions for disabled patient populations. The Board discussed the importance of translational research and ways to facilitate this type of research. The stated goals of translational research are to increase the impact of clinical findings and to promote the application of basic research finding to clinic practice. The Board cited programs at the University of Southern California and George Mason University as possible models of translational programs; in some cases, members noted that success built on local interactions. The Board made a specific recommendation to provide resources and funds to support these translational interactions. It was suggested that, to promote this goal, the Board could draft a letter or perhaps encourage representatives from professional organizations to meet with the NICHD Director about ways to enhance interactions. Members of the Board could also work through their professional organizations to inform clinicians about research strategies, funding opportunities, and potential collaborations. The Board acknowledged that this effort would require dedicated resources and funds to foster these relationships.

NCMRR NEWSLETTER, INNOVATIONS

Dr. Weinrich discussed the NCMRR newsletter Innovations, a semiannual publication, which provides flexibility for supplementing the content of the NCMRR Web site. The target audience for the newsletter is rehabilitation grantees and advocates. The Board asked whether the NCMRR had any feedback on who uses the newsletter and what its impact is in the rehabilitation community. It was brought to the attention of NCMRR staff that not all Board members received the newsletter, although those who had received it found it useful. The Board suggested that the newsletter also be disseminated via listservs in the disability community, such as the Association of University Centers on Disabilities; NCMRR staff would welcome the names of relevant groups to add to its mailing list. It was also suggested that the newsletter could be an additional venue to encourage translation of research.

LOW-COST ALTERNATIVES TO CONFERENCES AND WORKSHOPS

The NCMRR proposed the use of Webinars as low-cost alternative to conferences and workshops. In a Webinar, an expert can give an interactive presentation online that would also be recorded and archived for future viewing. The Board requested more information regarding communication resources currently available, costs and marketing associated required for sponsoring a Web-based seminar, contracting of professionals to run the Webinars, and the potential target audiences. It was suggested that the NCMRR could contribute to existing Webinar series, if topics relevant to the rehabilitation and disability communities are currently lacking.

Ideally, NCMRR staff noted that Webinar topics should be cross-cutting issues with direct impact on rehabilitation research. The following were presented to the Board as examples of potential topics:

• Defining and isolating the “active ingredient” in rehabilitation
• Standardizing and implementing rehabilitation interventions
• Identifying appropriate outcome measures
• Promoting progress in the chronic phase
• Differentiating the impact of interventions from natural processes
• Understanding the intersection of research and health policy

The Board was asked to recommend topics not currently noted, but needed in the rehabilitation research community. As a start, the Board suggested a focus on treatment dosing. Another topic noted was the rehabilitation model and its relationship to outcome measures. Members explained that domains of measurement for rehabilitation outcomes—namely--impairment, functional limitation, disability, participation—are often confused, so perhaps the NCMRR could help provide some clarity on this issue. This topic would be particularly timely, given that the National Institute of Disability and Rehabilitation Research (NIDRR) is interested in vocational outcomes. The Board added that particularly problematic areas could be explored through the convening of expert review panels. The Board also suggested that the NCMRR consider hiring multi-media contractors who design and run Webinars.

REPORT FROM THE NICHD DIRECTOR

The NICHD director, Dr. Duane Alexander, reported on the budget numbers for the upcoming fiscal year. According to the latest reports, the NIH would receive $30.5 billion, including $1.294 billion directed to the NICHD; both these figures represent a 1.4 percent increase from the respective amounts in the current budget. As a result of the efforts of Senator Arlen Specter, the NIH would be getting $10.4 billion in ARRA funds; these funds must be expended by September 2010, with no immediate commitment for longer-term support. Funds for CER were also included within the ARRA amounts. Dr. Alexander explained that the NICHD would dispense its share of ARRA funds ($327 million) through various mechanisms; the major focus was two-year support for meritorious peer-reviewed research grants (e.g., R01s, R21s, R03s) that fell outside the NICHD payline in the 10 percentile to 25 percentile region, but added that funds would also be provided for administrative supplements to current grants, such as supplements for summer students and teachers, and a small amount of support for the newly developed NIH Challenge Grant and Grand Opportunity (GO) Initiatives.  The Challenge Grant Initiative got an unexpectedly large response across the NIH with more than 15,000 research applications. The NICHD will also support initiatives in specific program areas, such as autism.

Dr. Alexander provided some information on the Christopher and Dana Reeve Paralysis Act, which calls for promoting collaborative scientific research, advancing rehabilitation research, and improving the quality of life for people living with paralysis and mobility impairments from any cause including stroke, amyotrophic lateral sclerosis, spinal cord injury, multiple sclerosis, and others. This legislation was permissive, not directive, in nature, meaning that the NIH Director is encouraged but not mandated to support research in this area. The Paralysis Act directly impacts activities of the NCMRR as well as those of the National Institute of Neurological Disorders and Stroke (NINDS), but Dr. Alexander emphasized that no additional funds were provided to meet these goals.

The Board discussed the need for an NIH consortium on medical devices, with emphasis on increasing access for the aging population; particular concerns included dental and gynecological visits for individuals with disabilities. Members also encouraged the NICHD to support translational research and clinical trials for rehabilitation. Dr. Alexander suggested that CER might be one way to support “bench to bedside” research in this area. He added that he believed discovery research in the area should not just be left to industry, but should include an NCMRR component.

ELECTION OF THE NEXT CHAIR-ELECT

After the Board considered a few potential nominees, Dr. Kimberly Anderson emerged as the sole candidate and was voted in as the next Chair-Elect. Dr. Joy Hammel, the former Chair-Elect, would move into the role of Chair at the conclusion of this meeting.

FUTURE NCMRR RESEARCH INITIATIVES

NCMRR staff noted that the Center is seeking ideas for future research initiatives. The profile includes topics that are important, timely, underserved by peer-review, and could translate into discrete investigator-initiated applications. The Board was presented with the following potential topics for future initiatives (PAs and RFAs):

• Autonomic dysfunction
• Caregivers stress and support strategies
• Promotion of home- and community-based interventions
• Development of cognitive rehabilitation interventions
• Strategies for inducing behavioral change and promoting healthy behaviors
• Management and treatment of the minimally conscious state
• Role of sleep in repair, plasticity, recovery, and rehabilitation

The Board suggested some additional topics that the NCMRR could consider for future research initiatives. These topics included wellness and prevention of disease (e.g., cardiovascular and musculoskeletal health), technology and rehabilitation interface (e.g., tele-rehab), and the contribution of rehabilitation to the medical record. It was also suggested that the concept of self-directive care (e.g., empowerment) be added to the caregiver stress initiative. NCMRR explained that it would use Board input in developing future initiatives as opportunities and resources become available within the NICHD.

More information regarding the NCMRR-proposed topics was e-mailed to the Board in days immediately following the meeting to enable members to prioritize these topics through follow-up communications with the NCMRR.  The Board was most enthusiastic about the initiatives on caregiver stress, home- and community-based interventions, and the impact of sleep on rehabilitation. There was also significant enthusiasm for the initiatives on autonomic dysfunction, strategies for inducing behavioral change and promoting healthy behaviors, and the management of the minimally conscious state, but less interest in the proposal on cognitive rehabilitation. Board members also provided NCMRR staff with specific comments on each of these proposals, which will help in developing these initiatives for the research community.

RETIRING BOARD MEMBERS AND INTRODUCTION OF NEW MEMBERS

Drs. Carolee Winstein, Leticia Castillo, Lisa Iezzoni, and Margaret Turk retired from the Board and were thanked for their years of service.

The names of the new members who would be joining the Board in December 2009 were also announced: George Kraft, M.D., M.S., University of Washington; Denise Tate, Ph.D., University of Michigan; Pam Duncan, P.T., Ph.D., FAPTA, FAHA, Duke University; and J. Michael Dean, M.D., M.B.A., University of Utah.

FUTURE AGENDA TOPICS

The Board discussed potential future agenda items, which included: interactions with CMS on cost-effectiveness and translation into practice; NCMRR’s report to the National Child Health and Human Development Council (the NICHD federal advisory committee); the scope of NCMRR research, especially efficacy versus effectiveness; interactions with relevant NIH peer-review groups; identifying appropriate outcome measures for specific conditions (e.g., stroke recovery); and supporting research in rural versus urban domains (comments from Drs. Enders and Hogan).

Meeting was officially adjourned at 3:55 pm, but a few Board members remained online to provide feedback on the virtual meeting format that was used for this meeting.