Summary Minutes: Special Teleconference

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)
August 13, 2013         4:00-5:00 pm EST

The teleconference was held to provide an advance description of the NICHD response to the Blue Ribbon Panel Report on Rehabilitation Research at the NIH. Teleconference participants included current Advisory Board members, ex-officio Board members, and members of the greater rehabilitation research and advocacy communities. The NICHD provided background material to all participants.

NICHD Director Dr. Alan Guttmacher provided background on the Blue Ribbon Panel, noting that he and NIH Director, Dr. Francis Collins empanelled the group in 2011. The Panel included twelve prominent rehabilitation researchers representing a broad range of professional disciplines. The Panel was charged with assessing the state of rehabilitation research across the NIH and identifying how the NCMRR and NIH could better catalyze and support rehabilitation research. As a starting point, the Panel was told that it was unlikely that NIH and NICHD resources would increase significantly in the near future, and that any major structural change would be difficult to achieve because of the need for congressional action.

The Panel reviewed the authorizing legislation that established the NCMRR and analyzed funding levels and trends at the NICHD. The Panel also explored rehabilitation research portfolios in other select NIH Institutes, gathering input from NICHD staff, staff from other Institutes, and the trans-NIH rehabilitation coordinating committee. The Panel also interviewed leadership of selected NIH scientific coordinating offices bodies, such as the NIH Office of Research on Women’s Health and the Office of AIDS Research. The final Panel report was released in December 2012.

Dr. Guttmacher summarized the Panel recommendations.  These include:

  • It is critical to increase support substantially for and coordination of all aspects of rehabilitation research, to meet the growing rehabilitation needs of Americans. 
  • The NCMRR should have direct granting authority with independent control and increase its coordination of research within the NIH and across federal agencies. This should be aided by granting the NCMRR control of its own budget to increase stability of funding over time. In addition, the NCMRR should report on these functions and have the ability to negotiate budget levels and build capacity over time.
  • The NCMRR should collaborate with other NIH Institutes and Centers, agencies, and the research and advocacy communities, to identify research needs.
  • Despite legislative requirements, the NCMRR should be elevated to the level of an independent Institute/Center or an Office in the NIH Office of the Director.
  • The NIH should adopt a consistent definition of rehabilitation research, based on the World Health Organization definition; increase the participation of persons with disabilities and advocates in the research planning process; and continue to build research capacity by substantially increasing funding for all aspects of rehabilitation research over time.
  • The name of NCMRR should be changed to the National Center for Rehabilitation Research.

To respond to these recommendations, Dr. Guttmacher proposed a model that would align with many (but not all) of the Blue Ribbon Panel recommendations and rehabilitation community concerns.  The framework includes improving and incentivizing coordination of rehabilitation research, reducing duplication of efforts where possible, promoting strategic planning of future research, and ensuring a baseline level of funding for rehabilitation research. He noted, however, that legislative constraints prevented moving the NCMRR from within the NICHD and elevating it to a separate, stand-alone entity within the NIH. Under this proposed model, the NCMRR would support research grants primarily through co-funding with other NIH Institutes/Centers (ICs) or with other relevant NICHD Branches, rather than having a separate and large grant portfolio of its own. [In a subsequent email communication with the teleconference participants, Dr. Guttmacher indicated that the NCMRR would accept all appropriate rehabilitation grants that could not find assignments in other NIH institutes or NICHD programs.]  At a minimum, the NCMRR would continue to fund directly research infrastructure, training and career development, conference, and small business and technology transfer (SBIR/STTR) grants in rehabilitation research.

To accomplish these goals, Dr. Guttmacher proposed that the NCMRR be given a dedicated funding stream equivalent to 7.0% of the NICHD extramural budget (which is actually a modest increase over the average of NCMRR annual funding levels of the last five years). Under this proposal, NCMRR staff would focus primarily on coordinating activities, with less emphasis on administering grants. Under this new plan, the NCMRR Advisory Board, reflecting a wide range of stakeholder communities, would continue to provide strategic input on NCMRR activities. In addition, Dr. Michael Weinrich, current Director of the NCMRR, would move to a new role as Senior Advisor to the NICHD Director for Device Development, Biotechnology, and Bioengineering.  In the meantime, NICHD would launch a national search for a new NCMRR Director. During the transition, Dr. Ralph Nitkin would serve as acting Director.

Dr. Guttmacher indicated that the proposal had been presented to the NIH Steering Committee and then discussed with NCMRR staff and the Blue Ribbon Panel. In the next few weeks, the proposal would be presented to the senior NICHD extramural community and then to key NIH Institute Directors. It would be formally introduced at the NICHD National Advisory Child Health and Human Development Council meeting on September 19 and then discussed with the NIH Rehabilitation Coordinating Committee and other NIH staff. Finally, the proposed changes would be presented to the research community though a Notice in the NIH Guide and subsequent presentations at national research meetings.

Although the Advisory Board and other participants appreciated the NICHD proposal, they asked about how the new plan would be implemented and its effect of rehabilitation research. Specifically, one participant asked how NCMRR co-funding would work with other ICs, given that these entities would have different paylines. Dr. Guttmacher responded that the NCMRR would have some flexibility in the way that it co-funded grants and could be proactive in providing incentives for other ICs to pay beyond the payline. He also noted that NCMRR co-funding could include supporting specific trans-NIH rehabilitation funding announcements and initiatives. Another participant asked how the proposed NCMRR funds would be distributed across various grant mechanisms and categories. Dr. Guttmacher stated that NCMRR would be expected to spend a significant amount of its budget on coordinating across ICs and with other agencies and groups, while co-funding needed rehabilitation research according to a research plan. Other than that, it would be difficult to predict, at this time, how the research funds would be distributed across different types of research grant and training and career development mechanisms, or across different types of critical research programs or topics. The distribution of funds would probably evolve over time.

Another call participant asked about the rollout and the potential involvement of the National Advisory Board for Medical Rehabilitation Research in these efforts. Dr. Guttmacher indicated that the trans-NIH Rehabilitation Research Coordinating Committee would have some input into developing funding procedures and strategies, but most importantly, the NCMRR would work with the Advisory Board to create and update the existing research plan and to prioritize overall research opportunities. Another participant asked to what degree fiscal constraints played a role in the new proposal to change the role of the Center. Dr. Guttmacher responded that this proposal was developed as a way to increase the NCMRR’s ability to leverage resources, adding to the overall level of NIH support of rehabilitation research, while increasing visibility for these research efforts. The participants also discussed how other NIH ICs might respond to NCMRR co-funding opportunities and how this might alter their own commitment to medical rehabilitation research support, either positively or negatively.

The teleconference was concluded shortly after 5:00 pm. 

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