Enabling America Assessing the Role of Rehabilitation Science and Engineering (1997) / Chapter Skim
Currently Skimming:
A Data Collection and Analysis
A Data Collection and Analysis
Pages 317-351
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Appendixes
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REVIEW OF REHABILITATION RESEARCH ABSTRACTS As part of the charge to this committee to assess and evaluate federal rehabilitation research programs and make recommendations for future research, the committee collected, reviewed, and analyzed research abstracts from the major agency programs in rehabilitation research. The general purposes were to (1)
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(124) · National Institute for Disability and Rehabilitation Research (NIDRR)
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259 records (will not be included in committee review) FIGURE A-1 PHS research in rehabilitation: process for identifying, retrieving, and reviewing rehabilitation related abstracts.
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The intent of these three categories is to provide a succinct summary of the rehabilitation science and engineering research that is funded by the federal government, the extent to which the research projects identified by the agencies fulfill this committee's definition of rehabilitation science, and whether the work involved human subjects, animals, tissue culture, synthetic materials, or computer models. In this way, the committee could assess the current range, trends, and general priorities in the field of federally funded research in rehabilitation science and engineering.
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emphasizing transition among rehabilitative states and that can include studies of materials, tissues, or subjects with no disabling conditions Not related Research that is not clearly relevant to rehabilitation Rehabilitation Relevance This classification had five mutually exclusive categories (see Table A-1. "Rehabilitation science" includes research projects that address two or more rehabilitative states (defined in the following section)
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. This category includes research that addresses technology or mechanisms contributing to disability without directly studying pathology, impairment, functional limitation, or disability.
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The abstracts often did not contain enough detail to ascertain study designs, for example, or whether the projects adequately addressed environment, policy, secondary conditions, quality of life, or outcomes measures, among other concerns. Furthermore, because the data were culled from the abstracts, some of which were quite brief, it is likely that our results do not reflect every experiment that was supported by the larger grants.
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NIH's lack of a unified definition for rehabilitation research (see Box A-2) , for example, and the lack of correlation between NIH and the CRISP system of projects identified as being rehabilitation related indicates a discordant effort inside NIH and reflects the lack of true coordination throughout the federal government.
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Many studied both animals and human subjects. Rehabilitation research that involve human subjects and studies of functional limitation and disability were substantially more costly than grants that dealt with animals, tissue cultures, or subjects with no disabling conditions.
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330 APPENDIX A The following agencies responded to the questionnaire: National Center for Injury Prevention and Control, Centers for Disease Control and Prevention Disabilities Prevention Program, Centers for Disease Control and Prevention National Institute for Disability and Rehabilitation Research Clinical Center, Rehabilitation Medicine Department, National Institutes of Health National Center for Medical Rehabilitation Research, National Institutes of Health National Science Foundation Social Security Administration U.S. Department of Veterans Affairs
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This enabled the committee members to discuss current issues with representatives with different perspectives and to develop a more complete understanding of the trends and topics within the rehabilitation field as a whole. Presentations and Papers The committee invited a variety of organizations to participate in the public sessions of each meeting.
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· The multiplicity of funding agencies is an advantage for promoting and conducting rehabilitation research, especially if greater coordination at the top can occur. · New rehabilitation research disciplines are not needed; however, the creation of collaborative multidisciplinary research teams and environments is needed.
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Rehabilitation Nurses Foundation/Association of Rehabilitation Nurses Top 10 clinical rehabilitation nursing research priorities: 1. Interventions to support health-promoting behaviors in people with disabling conditions 2.
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Issues of transferring newly learned skills to the home environment Paralyzed Veterans of America · Rehabilitation outcomes measures are the clearest priority. · Rehabilitation research is woefully misdefined because the line between basic scientific research and rehabilitation research is increasingly unclear.
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The committee received the following papers: · Comments to the Committee Assessing Rehabilitation Science and Engineering, Pamela Duncan, American Physical Therapy Association · Comments Regarding the Assessment of Rehabilitation Science and Engineering Research Priorities, John Melvin, Research Priorities Task Force Physical Medicine and Rehabilitation · Statement of the Paralyzed Veterans on America Before the Committee Assessing Rehabilitation Science and Engineering, Frank Morrone, Paralyzed Veterans of America · Research Priorities for Rehabilitation Nursing: A Summary, Dorothy Gordon, Rehabilitation Nursing Foundation Educational Standards To investigate the current state of education, specifically interdisciplinary exposure and training in different specialties, the committee contacted several organizations that certify individuals or accredit institutions. The following boards and associations provided information about the educational standards in their respective fields: · American Board for Certification in Orthotics and Prosthetics · American Board on Physical Medicine and Rehabilitation · American Occupational Therapy Association · American Occupational Therapy Certification Board · American Physical Therapy Association · American Speech-Language-Hearing Association · Council on Rehabilitation Education · Rehabilitation Engineering and Assistive Technology of North America · Rehabilitation Nursing Certification Board
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, the committee contacted the following organizations: American Academy of Pediatrics, American Nurses Association, and the Institute of Electrical and Electronics Engineers-Engineering in Medicine and Biology Society. FOCUS GROUPS In conjunction with the meetings and conferences, committee members held a series of small focus group meetings with the following professional and consumer groups: · American Academy of Physiatry · American Occupational Therapy Association · American Physical Therapy Association · American Speech-Language-Hearing Association · American Spinal Injury Association · First International Conference on Aging and Cerebral Palsy · National Association of Rehabilitation Research and Training Centers · National Council on Independent Living · Society for Disability Studies Purpose and Method The focus group sessions were convened to assist the committee in casting a broad net for the collection of information about the current state of rehabilitation science and engineering and to help ensure the inclusion of the unique perspectives of the specific professional or consumer groups (see Box A-5.
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These included the following: · a desire to see increased funding of research projects, primarily from the federal government, · the importance of increased communication between different disciplines involved in rehabilitation and the emphasis on the interdisciplinary nature of the science as the science grows, and · the two most common research priorities were identified to be secondary conditions and aging with disabling conditions. The following is a summary of the focus groups' responses to the questionnaire.
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Furthermore, the lack of a definition of rehabilitation research within the federal programs does not facilitate the integration of rehabilitation scientists in their studies, and hinders transfer of findings into applications that can be tested in applied studies. Grant review committees were also identified as lacking strength and experience in dealing with applied research as opposed to pathophysiology and impairment level strategies.
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Implementing feedback loops from the consumer to the rehabilitation professionals regarding quality of care, and training directed towards replacing the current medical model with the "Independent Living/Consumer Empowerment" model would improve current services vastly, bridging the gap between medical professionals and their patients with disabilities who view the quality of life very differently. End-users of technology and programs should be involved in the earliest part of the design process, especially in regard to rehabilitation engineering.
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The lack of training and experience of rehabilitation researchers to compete successfully for NIH funding and the increasing burden of clinical care responsibilities faced by physicians who care for people with disabilities severely limit advances to the field were both mentioned as impediments to the development of rehabilitation science. Another major obstacle is the perceived lack of value for the applied sciences.
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Independent Learning Centers need to make themselves available to Vocational Rehabilitation Counseling students of all disciplines, because ILCs do what VR should be doing: faster, better, cheaper, and from a consumer-driven perspective. Finally, some called for a "War on Disability" similar to the "War on Cancer" in the 1960s, establishing a National Institute for Rehabilitation Research with appropriate accompanying study sections.
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2. Involve consumers in advisory committees to understand the needs and potential contribution of science to improving social participation of people with disabling conditions (Question 23; Score: 5.76)
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DATA COLLECTION AND ANALYSIS 10 9 8 7 8 En ~ 5 ._ Cal 0, 4 lo: 6 3 1 345 o 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 Question # FIGURE A-2 Responses to the survey of private rehabilitation organizations: scores on a relative scale.
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Lowest Priority Concerns or Needs 1. Establish center grants to foster interdisciplinary studies (Question 9; Score: 4.56)
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"Federal Administration of Rehabilitation Research: An Overview and Outline," contributions from lane West National Council on Disability "The Role of Environment in Supporting Performance" contributions from Mary Corcoran, Ph.D., OTR, and Laura Gitling, Ph.D. Thomas Jefferson University "Quality of Life" contributions from Dorothy Edwards, Ph.D.
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Attorney Rory Cooper Paralyzed Veterans of America Francis V Corrigan, EdD National Institute on Disability and Rehabilitation Research Dennis Chamot, Ph.D.
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National Center for Medical Rehabilitation Research Bruce Cans, M.D. Wayne State University School of Medicine Lynn Gerber, M.D.
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Social Security Administration Lauren Meader Institute of Medicine John Melvin, M.D. Mossrehab Hospital Brian Millin National Institute on Disability and Rehabilitation Research Frank Morrone Paralyzed Veterans of America Larry Morton National Institutes of Health Jacques Normand, Ph.D.
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National Research Council Dorrett Worrell National Institutes of Health Other Contributors Nanette Bair American Occupational Therapy Association Carol Kochhar George Washington University Keith Miller Sandia National Laboratories Don Wesenberg Sandia National Laboratories George Zitnay, Ph.D. Brain Injury Association 351
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