Research capacity building: a true action agenda.

In late April, I attended a meeting rifled "Rehabilitation Medicine Summit: Building Research Capacity." The overarching goal of the Summit was to discuss obstacles to and opportunities for research capacity building in the field of rehabilitation, and the intent was to bring together rehabilitation research leaders with others who have a stake in disability research. Attendees reviewed position papers prepared in advance of the Summit and, over 2 days, engaged in in-depth discussion. The specific objective of the Summit was to draft an action agenda that rehabilitation stakeholders could use to strengthen efforts to build research capacity in rehabilitation. For me, the meeting was remarkable in 2 important ways.

First, the planning for this Summit and the composition of its attendees were truly interdisciplinary. Attendance was by invitation and was limited to 100 invitees drawn from diverse groups, including researchers, practitioners, educators across all major rehabilitation disciplines, and representatives of government agencies and disability advocacy groups. All of the rehabilitation professions and major professional and consumer stakeholder groups received an invitation; most sent a representative to participate.

The Foundation for Physical Medicine and Rehabilitation spearheaded planning for the Summit and asked the American Academy of Physical Medicine and Rehabilitation, the American Congress of Rehabilitation Medicine, and the Association of Academic Physiatrists to establish a Summit Steering Committee and a Program Planning Committee. The Program Planning Committee, chaired by Dr Walter Frontera of Harvard University, consisted of 11 representatives from the rehabilitation field, 7 (64%) of whom were nonphysicians. Two physical therapists served on the Summit Planning Committee, and 7 physical therapists attended the Summit. Contrast this committee's composition with the 1990 Task Force on Medical Rehabilitation Research, which generated a report that served as the basis for creating the National Institutes of Health (NIH) National Center for Medical Rehabilitation Research (NCMRR). That 1990 "interdisciplinary" planning group consisted of 18 members, only 6 (33%) of whom were nonphysicians. We have come a long way in the past 15 years in moving toward genuine interdisciplinary collaboration between medical and nonmedical disciplines that are engaged in rehabilitation research, and the profession of physical therapy has played a central role in that transformation.

The second promising aspect of the Rehabilitation Medicine Summit was what it produced. Most of the research planning groups or summits that I have attended produced a list of research priorities to be addressed. Although such lists are useful in focusing attention in particular areas, ways to achieve those priorities rarely are addressed. In contrast, the Rehabilitation Medicine Summit asked attendees to work together at the meeting to produce a detailed action agenda that not only listed specific priorities but specific steps to accomplish each priority. (An executive summary of the Rehabilitation Medicine Summit Research Capacity Building Action Agenda will be published in major rehabilitation journals, including Physical Therapy, in late 2005.)

In listening to the various work group reports on the last day of the Summit, I was impressed by the emergence of a top priority that was expressed by several group leaders: the inadequacy of our current advocacy efforts in rehabilitation and the need, therefore, to create a broad-based Rehabilitation Research Advocacy Group. This group would not be tied to any one professional discipline or organization and would have significant consumer membership and participation. The charges to such a group would be to increase funding for rehabilitation research; to build research capacity across all major federal, foundation, and philanthropic funding agencies and organizations; to identify new legislative champions who will work on behalf of rehabilitation; and to increase public awareness of the demographics of disability and their relationship to rehabilitation research. Because definitions of disability differ from source to source, statistics are inconsistent; however, in 2000, the US Census Bureau (1) reported that as many as 49.7 million people in the United States aged 5 years and older had a disability--almost 19% of the population--with 21.2 million (8.2%) having a condition that limited such basic physical activities as walking, climbing stairs, reaching, lifting, or carrying. The urgency of the need for rehabilitation research is clear.

A broad-based coalition of rehabilitation disciplines and consumer groups that have a compelling interest and stake in rehabilitation and in building rehabilitation research capacity could be a powerful vehicle for positive change and progress in tight fiscal times. Over the years, I have witnessed and even marveled at the impressive accomplishments that a similar professional and consumer coalition has achieved in the field of arthritis, a field that is not very different from rehabilitation.

The arthritis community has been incredibly skilled at bringing together professionals and interested public stakeholders at local, state, and national levels to further the cause of individuals who have chronic arthritis. To cite just one example, they were instrumental in building support for the creation of the NIH Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), and they have lobbied aggressively over the years to increase funding for arthritis-related research and research capacity building. In fiscal year 2004, for instance, NIAMS invested $499,368,000 in arthritis-related research and capacity building. (2) Compare that figure with the $63,590,772 (written communication, NIH/NICDH, May 2005) devoted to rehabilitation research through the NCMRR. Other NIH Institutes fund some research that could be considered relevant to rehabilitation and, therefore, the ultimate amount of NIH support may be larger than that figure; however, the amount of funding for rehabilitation research is disappointing overall. A partnership of rehabilitation professionals with stakeholders from the disability community could yield impressive results in the years ahead.

I believe that the interests of physical therapy research would be well served if our profession played a leadership role in coalition-building efforts aimed at enhancing rehabilitation research capacity and research support at all levels. APTA's new research policy initiatives--whose progress will be reported regularly in this Journal (see page 688)--is a good start. I believe that, if all of the rehabilitation-related disciplines work together, we can be far more successful than we would be if each discipline worked alone toward the same or similar goal.

References

(1) Disability Status: 2000. Census 2000 Brief. The Current Population Survey and the Survey of Income and Program Participation. Washington, DC: US Census Bureau; 2000. Available at: http://www.census.gov/hhes/www/disability/disabstat2k/disabstat2ktxt.html. Accessed May 23, 2005.

(2) Fiscal Year 2004 Actual Obligations. Bethesda, Md: National Institute of Arthritis and Musculoskeletal and Skin Diseases. Available at: http://www.niams.nih.gov/an/budget/budget04.htm. Accessed May 26, 2005.

Alan M Jette, PT, PhD, FAPTA 

Acting Editor in Chief

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