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Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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Appendixes

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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A Data Collection and Analysis

In an effort to be comprehensive in addressing the committee's overarching task of assessing the current status of rehabilitation science and engineering and developing recommendations for future needs in the field, the committee pursued several avenues of data collection and analysis. In addition to what might be the obvious, that is, reviewing federally funded research in the field, the committee also explored many other sources in a concerted attempt to cast a broad net for the collection and assessment of information. These sources included discussions with federal agency representatives, a variety of presentations at committee meetings, focus groups with consumers and professional associations, surveys of private and public organizations, and commissioned papers. A summary description of these follows.

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) assess the current status of research, (2) identify research needs and gaps, and (3) provide an objective basis for the committee's consideration in the development of recommendations for future research. More specifically, the committee was interested in the following questions (among others):

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×
  1. How much research is clearly related to rehabilitation according to the committee's definition of rehabilitation as the ''process" of movement in the enabling/disabling process?
  2. How much rehabilitation-related research is being done in the various categories of pathology, impairment, functional limitation, and disability?
  3. What are the common study designs and experimental subjects?
  4. What are the major areas of research emphasis for each federal agency? Do the areas of research emphasis complement each other?
  5. How much rehabilitation-related research focuses on factors such as: environmental factors, policy issues, developing assistive technology, secondary conditions, quality of life, and health outcomes.
  6. The remainder of this section describes the process that the committee used in collecting, reviewing, and analyzing the abstracts, a summary of the results of the analysis, and a discussion of some of the problems encountered as part of the process.

    Sources and Numbers of Abstracts

    Abstracts of rehabilitation-related research activities were obtained for fiscal year 1995 from the following agencies for review (numbers in parentheses indicate how many abstracts were received):

    • Centers for Disease Control and Prevention (CDC) (17)
    • National Institutes of Health (NIH) (1,480)
    • Agency on Health Care Policy and Research (AHCPR) (12)
    • National Science Foundation (NSF) (124)
    • National Institute for Disability and Rehabilitation Research (NIDRR) (288)
    • U.S. Department of Veterans Affairs (VA) (176)

    Of the 17 abstracts provided by CDC, 12 were from the Disability Prevention Program 2 were from National Center for Injury Prevention and Control, and 3 were from the National Institute on Occupational Safety and Health. The 124 abstracts from NSF were from its Bioengineering and Environmental Systems Division. The 288 NIDRR abstracts were obtained from its Annual Program Directory for fiscal year 1995. All of the VA abstracts were from the Rehabilitation Research and Development Program—although other rehabilitation-related research is apparently conducted by VA, abstracts were not obtainable for review. The 1,894 NIH abstracts were obtained from two different sources. The first set (973 abstracts) was provided in response to a committee request to the director

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

FIGURE A-1 PHS research in rehabilitation: process for identifying, retrieving, and reviewing rehabilitation related abstracts.

of NIH.1 The second set (764 abstracts, 257 of which corresponded with abstracts identified by the Institutes) was retrieved from the Computer Retrieval of Information on Scientific Projects (CRISP) database on CD ROM for fiscal year 1995. The CRISP database is an online computer-based system that contains information on funded extramural and intramural research in the Public Health Service. CRISP was also the source for the abstracts from AHCPR that were reviewed. Finally, the committee received one abstract from the Health Resources and Services Administration and three abstracts from the Office of Disability, Aging, and Long Term Care within the Office of the Assistant Secretary for Planning and Evaluation. Figure A-1 describes the process that the committee followed in identifying and retrieving abstracts from CRISP.

1  

NIH was asked to provide the committee with abstracts from each of the institutes at NIH, along with their respective definitions of rehabilitation-related research.

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

In general, the keywords "rehabilitation" and "disability" were used and the keywords "mental health'' and "substance abuse" were excluded Through the Medical Rehabilitation Coordinating Committee, the various NIH institutes submitted their definitions of rehabilitation research and a listing of all the rehabilitation or rehabilitation-related research that was funded in fiscal year 1995

Review and Analysis of Abstracts

The committee performed a pilot examination of the abstracts using a form that it created to assess whether certain types of information would be available for review and analysis The form included six major sections (see Box A-1), each with a subset of several variables for evaluation. The results of the pilot study indicated that the varied quality and limited amount of information in the abstracts were inadequate to address many of the committee's questions and the review needed to be reduced in scope

Following the pilot review and in accord with the limited amount of information available in the abstracts, the abstract review process was scaled back to address only the first three sections (see Box A-1) All abstracts from the federal agencies were then reviewed by a subcommittee and staff, and classified according to rehabilitation relevance, rehabilitation state addressed, and experimental subject.

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 The operational definitions for the different categorizations are described below

BOX A-1 Major Sections of the Abstract Review Form

  1. Relevance to rehabilitation science and engineering
  2. Rehabilitation states
  3. 3  

    Experimental subjects

  4. 4  

    Targeted population and condition

  5. Study design
  6. 6  

    Other descriptors

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

TABLE A-1 Rehabilitation Relevance Classification

Category

Description of Research

Rehabilitation science

Research that addresses the transition between states of the enabling-disabling process (i.e., pathology, impairment, functional limitation, and disability)

Rehabilitation engineering

Research that emphasizes the development of devices or other technology applicable to the enabling-disabling model states

Drug or alcohol abuse and mental health

Research that addresses rehabilitation of drug and alcohol abuse; mental health studies were also classified here

Rehabilitation related (single state)

Research that is related to rehabilitation but not 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), and in some cases can span all of the rehabilitative states from pathology to disability. Because these are exclusive categories, any project that cut across rehabilitation states, and therefore met the definition of rehabilitation science, but that was predominantly an engineering modality, was categorized as "rehabilitation engineering." The "rehabilitation-related/ single state" category includes projects that are relevant to rehabilitation but that focus on only one state in the enabling-disabling process (not transitions among the states). Research involving drug or alcohol abuse and mental health research were specifically excluded from this committee's charge. Finally, the category "not related" described projects that did not have a research component or that were not clearly relevant to rehabilitation research. Among such abstracts were grants to purchase equipment for research, training with no research component, and seminars that did not produce a report.

Rehabilitative States

Under this classification the project abstracts were categorized ac-

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

TABLE A-2 Rehabilitative States Classification

Category

Description of Research

No disabling conditions

Research that addresses the state of function or use of subjects with no disabling conditions to investigate mechanisms that are potentially relevant to assessing and treating disabling conditions

Pathology

Research that examines changes of molecules, cells, and tissues that may lead to impairment, functional limitation, or disability, distinguished from pathology by manifestation at organ or organ system level

Impairment

Research that analyzes changes in particular organs, systems, or parts of the body; impairment is distinguished from functional limitation due to emphasis on organ and body components instead of the whole body

Functional limitation

Research that examines functional changes involving the entire subject, manifested by task performance

Disability

Research that focuses on the interaction of the subject with and in the larger context of the physical and social environments

cording to the states described in the enabling-disabling process developed by this committee (see Table A-2; for more detailed discussion, see Chapter 3). The four basic states of pathology, impairment, functional limitation, and disability are those that were initially described by Nagi and more recently elaborated by the Institute of Medicine (1991).

A category called "no disabling conditions" was added to accommodate research that dealt with nonpathological materials. Note that this category is intended for studies that focus exclusively on materials or subjects with no disabling conditions (excluding those that only have control subjects with no disabling conditions). This category includes research that addresses technology or mechanisms contributing to disability without directly studying pathology, impairment, functional limitation, or disability.

Experimental Subjects

A third categorization of the projects is summarized in Table A-3. Note that this categorization distinguishes between "human" and nonhu-

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

TABLE A-3 Subject Classification

Category

Description of Research

Human

Clinical studies involving human subjects, including noncultured human tissues such as brain slices, tissues, and blood samples, and cadaver materials

Animal

In vivo studies involving nonhuman animal subjects, including noncultured animal tissues such as brain slices

Cultures

In vitro studies involving animal tissue cultures; this includes cell lines, as well as primary cell cultures

Synthetic

Studies of synthetic materials, both organic and inorganic; this includes electrodes, plastics, biopolymers, and inorganic materials

Computer

Computer and other models, including mathematical models

man "animal" preparations and that these two categories include both cadaver and living tissues from these two sources. "Cultures" are different in that they involve living cells that are cultured from either human or animal sources. The "synthetic" category includes both organic and inorganic materials that are used, particularly for prostheses and other devices. Finally, a category of "computer" and other modeling is included. These are not exclusive categories; many studies involve studies of multiple subjects, ranging from human to computer modeling.

Results

As mentioned previously, the committee was limited in their efforts to assess the current status of research by the quality of the abstracts. 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. Additionally, the abstract analysis was dependent on the efforts of a small subcommittee and IOM staff. No formal evaluation of internal validity was performed, e.g., inter-rater reliability evaluation. The committee does have confidence, however, these results provide a reasonable indication of the general trends that currently exist in rehabilitation-related research in the federal government.

The committee's specific results which describe each program and its research priorities can be found in Chapter 10.

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×
General Conclusions

Table A-4 summarizes the federal spending on rehabilitation-related research, according to the committee's findings. The committee segregated the programs into two groups. Those with budgets greater than $5,000,000 were analyzed individually and are listed first; those with budgets less than $5,000,000 were not examined and are listed on the bottom of the table. The first column enumerates the funding levels reported by the programs themselves. The second column then lists the amount of the funding associated with the total number of research abstracts that were reviewed for each program. NIDRR, for example, has a budget of $70,000,000, but much of this supports such items as centers and training—activities that were assessed separately from the examination of research activities. The third column lists the amount of funding that the committee classified as not related to rehabilitation-related research. The following three columns then delineate the amounts of the programs' budgets that support rehabilitation-related research, through individual research projects, center grants, and other spending, respectively. The final column provides the committee's best approximation of the amount of each program's budget that supports rehabilitation-related research.

The evaluation process itself led to several important conclusions. First, the task of identifying and collecting the abstracts illuminated the need for centralized administrative control of rehabilitation research. Agencies seemed unsure of their own rehabilitation efforts, much less those of other agencies. 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.

The committee also drew conclusions from the size of the research effort. The relatively small size of the research funding pool suggests that there are several gaps in the overall research efforts, but this is not meant to fault any particular agency for ignoring a specific issue. The fiscal limitation on rehabilitation research limits investigation to a narrow level of effort in each field. Of the rehabilitation states described above, pathology and impairment receive the most attention, primarily because it is within the mission of NIH to address these and NIH has the largest budget. NIDRR, among others, does focus on functional limitation and disability, but it only has approximately $12 million to support field-initiated or other investigative research efforts, as opposed to center grants or State Technology Assistance, for example.

Rehabilitation has yet to become a high priority for NIH and other agencies for which rehabilitation is not the primary goal. The current

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

level of research activity for NIDRR and other agencies is not sufficient to address the many pressing issues in rehabilitation today. A coordinating body equipped with the tools required to organize the federal agencies would not only bring much needed attention to the field would, but also increase the quality and efficiency of the present research efforts. The current status of research in the field of rehabilitation science and engineering is that it is small and could benefit greatly from additional funds, greater attention, and better overall administrative control.

A majority of the grants regarded by federal agencies to be for rehabilitation research involved studies of humans or human materials. 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. For example, although only 58 percent of the grants at NIH involved human subjects, those grants took up a lion's share of the funds (80 percent). Within rehabilitation science research specifically, human studies dominated and outnumbered studies involving animal, tissue culture, synthetic, and computer models by a 2:1 ratio. A small minority of studies used tissue cultures. Use of computer models was relatively rare.

Finally, the committee analyzed the research projects of each agency in terms of the agency's mission. (The committee used a series of interviews and questionnaires to investigate the agencies' missions, the method for which is described below, and a more detailed discussion of the mission and research analysis is available in Chapter 10.) In summary, each of the primary agencies involved in funding research in rehabilitation science and engineering has a unique mission and identity, and they do fund projects whose topics are related to the mission of the agency. The committee found no programs that need to be eliminated or consolidated, but it did feel that the efforts could be better coordinated. In all, the committee reviewed many promising projects and quality research which have the potential to influence the lives of people with potentially disabling conditions. There is still a pressing need for more research, and a better coordinated federal effort.

Agency Questionnaires and Interviews

In order to obtain a better understanding of the federal agencies involved in funding research related to Rehabilitation science and engineering, the committee developed two questionnaires: one designed to characterize the general mission and composition of each agency (see Box A-3, the second to characterize training activities (see Box A-4). The committee also interviewed federal agency representatives in person.

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

TABLE A-4 Summary of Federal Funding in Support of Rehabilitation-Related Research

 

 

Calculated Federal Funding

 

 

 

 

 

Reported Federal Funding

Total Project Abstracts Revieweda

Not Relatedb

Research

Center Grantsc

Other Spending

Best Approximation

NIHd

$142,579,000

$220,668,556e

$25,825,590

$194,842,966

$125,530,564

$320,024,530

 

NCMRR

15,459,000

14,624,000

3,266,000

11,358,000

349,000

 

11,707,000

NIDRR

70,000,000

11,188,982f

374,618

10,814,364

44,823,426

13,987,592g

69,625,382

VA

32,700,000

25,006,009h

320,988

24,685,021

993,991

6,700,000i

32,379,012

CDC

9,500,000

993,991j

0

993,991

8,506,009

 

9,500,000

NSF

7,000,000

3,501,923k

420,314

3,081,609

0

3,500,000l

6,581,609

Subtotal

$277,238,000

$275,983,461

$30,207,510

$245,775,951

$179,853,990

$24,187,592

$449,817,533

Subtotal (excluding Institutes)m

$134,659,000

$55,314,905

$4,381,920

$50,932,985

$54,627,426

$24,187,592

$129,793,003

ODALTCP

 

5,000,000

 

 

 

 

 

SSA

 

5,000,000

 

 

 

 

 

DOT

 

2,700,000

 

 

 

 

 

ATBCB

 

300,000

 

 

 

 

 

HUD

 

100,000

 

 

 

 

 

Subtotal

 

$13,100,000

 

 

 

 

$13,100,000

Total

 

$290,338,000

 

 

 

 

$462,917,533

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

a Project abstracts reviewed excluded center grants and abstracts that pertained to Mental Health or Drug/Alcohol Abuse.

b Abstracts that were not related included funding for seminars with no research component, equipment purchases, and research that did not clearly pertain to any stage of the enabling-disabling process.

c Center Grants were segregated because the abstracts did not provide enough detail to categorize them as the individual research projects were.

d This excludes NCMRR figures, listed in the line below.

e (Estimate) Sum of abstracts provided by CRISP and Institutes, minus a 17 percent overlap.

f (Actual) Abstracts provided by FY95 Program Directory. This excludes funding for training, and center grants, ADA compliance, academic disability studies, and miscellaneous contracts.

g Other spending includes training, ADA compliance, academic disability studies, and miscellaneous contracts.

h (Estimate) Abstracts provided by VA only for projects funded through VA Rehab R&D Service. Because individual funding levels were unavailable, they are approximated here using trends from abstract analysis. $25 million excludes $1 million for center grants funding. No abstracts from other R&D programs were provided.

i $6.7 million from other R&D programs within VA included in final approximation.

j (Actual) Abstracts provided by CDC and CRISP. CDC abstracts described center grants and had no individual funding levels. CRISP-identified individual research projects totaled $993,991.

k (Actual) Abstracts for all projects funded through RAPD program at BES were obtained from FastLane database. Other Directorates also fund rehabilitation research but do not have programs directed at disability or rehabilitation, and those abstracts were not obtained.

l $3.5 million from other Directorates within NSF included in final approximation.

m Subtotal excludes NIH funding outside of NCMRR.

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

BOX A-2 Examples of Definitions Used by Various Institutes Within NIH

National Institute of Arthritis and Musculoskeletal and Skin Diseases and National Institute of Neurological Disorders and Stroke

Rehabilitation is the study of physical disability in a group of diseases, including neurological, musculoskeletal, cardiovascular, and system disorders in which impairment, disability, and handicap are defined by quantified physiologic, physical, behavioral, and functional parameters. It is also the study of the reduction of residual disability, prevention and reduction of secondary complications, the restoration of physical function, communicative ability, and physiological, social, and vocational adaptation by interventions which include, but are not limited to, physical agents and exercises, bioengineering applications, and their mode of delivery. Finally, it is the study of maintenance of function in chronic disorders during the course of the disorder

National Institute of Nursing Research

Research is restoring or bringing to a condition of health or useful and constructive activity, usually involving learning new ways to do functions that have been lost Nursing research addresses many aspects of rehabilitation to restore lost function and improve quality of life. Examples include such scientific areas as muscle restoration and urinary incontinence and areas that involve patient and family adaptation to chronic illness and disability. Nursing research represents a blending of both the physiological and psychological aspects of rehabilitation.

National Institute of Deafness and Other Communication Disorders

Medical rehabilitation-related research is directed toward acquiring knowledge on functional restoration, improvement, or stabilization of performance and independence. It includes any research—basic, clinical, or applied—that may lead to the development of improved or new treatment or techniques

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

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

BOX A-3

Questions for Federal Agencies

GENERAL DESCRIPTION

  1. How is your agency unique (in terms of its mission, context, and research priorities?
  2. Who works at your agency (in terms of number of personnel, average education, years of service)?
  3. Where are the results of the research published?

FUNDING REHABILITATION RESEARCH AND TRAINING

  1. Regarding specific research funding awards, describe profiles of principal investigators, duration of funding, and areas of emphasis.
  2. What percentage of the budget is driven by agency announcements targeting research areas versus field or investigator-initiated research?
  3. What percentage of funding is targeted for training?6

INTERAGENCY ACTIVITY

  1. How well do you communicate with other agencies with similar missions?
  2. Discuss interagency overlap in missions, applications, funded grants, and requests for grants or proposals.

U S Department of Defense/Army

Rehabilitation Services Administration

Professional Associations

Over the course of the study, the committee requested and received presentations and papers from organizations and associations representing many of the different professional fields involved in rehabilitation science and engineering. 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 Committee members heard presentations and asked questions so that they could become familiar with the particular issues of the constituency that each organization represented A listing of the organizations that addressed the committee and some of the issues that they presented follows

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

BOX A-4

Current Training Opportunities in the Rehabilitation Sciences

  1. Does your agency fund training?
    1. What occupations does the training target?
    2. Where is the training emphasis?
    3. What is considered a success in training?
    4. What programs does your agency have for training people with disabling conditions, women, and minorities?
  2. What is the nature of your agency's training program?
    1. What types of research methods are most emphasized in the training programs?
    2. What are the predominant approaches used in the training programs?
    3. What is the pedagogical balance used in the training program?
    4. What disciplines are involved in your training programs?
    5. Are your training programs multidisciplinary?
    6. Do your training programs focus on multiple disabling conditions?
    7. How many trainees do your training programs graduate each year?
  3. Who are the mentors of the trainees supported by your agency's training programs?
  4. What is setting for the training program?
    1. Laboratory
    2. Hospital
    3. University clinic
    4. Freestanding rehabilitation facility
    5. Community health care facility
    6. Community advocacy-based facility
    7. Home
  5. How long is the training experience?
    1. Undergraduate
    2. Predoctoral training
    3. Postdoctoral training
    4. Career development
    5. Continuing education
  6. To what extent are the people being studied involved in the training program?
  7. Does your program sponsor training in any of the following areas?
    1. Effective and efficient community provision of service
    2. Influence of ILCs and, in general, self-help or advocacy groups for a wider span than rights and political change
    3. Environmental mapping for barners and facilitators of social participation by people with disabling conditions
    4. Measurements (psychometric, clinometric and communometric) that measure phenomena valued by people with disabling conditions and that have scientific rigor
    5. Social policy influences on resource availability
    6. Natural histories and longitudinal studies of the unexpected minorities (those living with conditions from which they would have died in earlier days)
    7. Engineering and assistive technology development, commercialization and use factors.
    8. Academic research training sites for prosthetists and orthotists.
    9. Economic analyses (e.g., employment and disability and the health care costs of disability
  8. Who reviews the training grant applications made to your agency?
Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

American Academy of Physical Medicine and Rehabilitation, American Congress of Rehabilitation Medicine, Association of Academic Physiatrists (jointly)

  • New models of research centers (multidisciplinary and with clinical research capacity enhancement) need to be developed and implemented.
  • A government-wide oversight body is needed to ensure proper direction and coordination of the various individual agencies involved.
  • 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.
  • Much greater financial support ($300 million) is mandatory to support a truly effective rehabilitation research agenda.
American Physical Therapy Association
  • Rehabilitation practice must shift to an evidence-based paradigm.
  • The training of a cadre of rehabilitation clinicians to become clinical investigators must be supported.
  • Priorities for research in rehabilitation must be established and focused research programs must be developed to accomplish these priorities.
  • Fewer academic programs and more academically qualified faculty are needed.
  • Rehabilitation clinicians must open their doors and develop more collaborative relationships between disciplines.
American Speech-Language-Hearing Association

The general area of communication sciences and disorders covers a broad spectrum of subdisciplines many of which are involved with rehabilitation science and engineering. Priorities for research in these areas are:

  • Augmentative communication, especially devices such as language boards or computerized synthetic speech instruments
  • Prosthetic laryngeal devices, especially the surgical implantation of electrolaryngies to be used for sound generation
  • Assistive listening devices including, but not limited to, wearable hearing aids
  • Cochlear implants which are being surgically implanted to link the current capability of implanted devices to finer auditory discrimination involved in speech perception.
  • Static structures (i.e., prostheses) for craniofacial anomalies, especially
Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×
  • cleft palate, and the sequelae of the removal of structures surgically from the orifacial region (cheeks, tongue, palate, pharynx, etc.) as a result of cancer.
  • Interventions for childhood and adult neurogenic disorders (e.g., cerebral palsy in children and head injuries in both children and adults), such as behavior therapy and augmentative and prosthetic devices.

Medlantic Research Institute

  • Consumer-driven markets best aid rehabilitation research, making it more creative, dynamic, and ultimately, more responsive.
  • Market-based health care systems are only effective if there are organized, informed consumer groups and competition on price and on quality and outcomes.
  • A consumer-driven system will empower the consumer to make choices and enable the provider to compete on a level playing field.
Sandia National Laboratories
  • There exists a need in rehabilitation science and engineering for central integrating projects to draw together existing funded research.
  • Private industry is efficient in molding and proliferating useful research as products.
  • University and federal researchers must be encouraged to seek private partners to cooperate with each other to share technologies.
  • Government agencies should be encouraged to cooperate with each other to share technologies.
  • A legitimate role of government is to promote partnerships with private industry, and agencies should be allowed and encouraged to actively establish such partnerships.
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. Effects of bladder management techniques on urinary tract infections, quality of life, and cost of care in individuals with neurogenic bladder
  3. Educational strategies to optimize patient and family learning in rehabilitation
  4. Therapeutics that enhance and maintain independence and self-care
Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×
  1. Effect of caregiving on family members who care for individuals with chronic illness/disabilities or disabling conditions in the home
  2. Interventions to prevent physiological complications and secondary disabilities
  3. Family characteristics that contribute to successful functional outcomes in rehabilitation
  4. Efficiency/effectiveness of specific bowel protocols on patient outcomes
  5. Interventions to assess and improve quality of life in people with disabling conditions
  6. Impact of a violence-induced disabling conditions on the rehabilitation trajectory
  7. Top 10 contextual rehabilitation nursing research priorities:

    1. Relationship of functional outcomes to type, intensity, and length of rehabilitation services
    2. The effect of changing health care priorities on the practice of rehabilitation nurses
    3. Cost and contributions of rehabilitation nurses as a component of the rehabilitation process
    4. Influence of the rehabilitation nursing staff mix on patient outcomes
    5. Impact of case management in the community on patient outcomes
    6. Effects of advanced-practice nursing in ambulatory care on patient outcomes
    7. Relationship between patient acuity, functional index measures, and patient care staffing
    8. Comparisons between comprehensive community-based and facility-based rehabilitation program outcomes
    9. Effect of levels of nursing competence on patient outcomes
    10. Issues of transferring newly learned skills to the home environment
    11. 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.
      • Rehabilitation program development must increase greatly its focus toward more immediately affecting the functional limitations of people with disabling conditions.
Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×
  • The level of training has fallen increasingly so that the gap between the rehabilitation clinician and the rehabilitation scientist has widened.
Submitted Papers

Several of the organizations continued their contribution to the committee's efforts by preparing background and position papers. 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
Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×
Education and Research Training Survey

To understand the research and training requirements and opportunities within certain academic disciplines better, the committee designed a short questionnaire inquiring into the levels of research experience of educators and graduates in certain rehabilitation-related fields. In addition to the boards and associations contacted for educational standards (listed above), 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). In this way, the committee was able to hear firsthand the concerns and desires of the people at the heart of rehabilitation and the people best able to form new directions for the field.

Response and Analysis

The focus groups represented a wide spectrum of individuals in-

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

BOX A-5

Forum and Focus Group Questions

Question 1:

Regarding the various and numerous federal research programs in rehabilitation, what is good? What is bad? What is missing?

Question 2:

What are the important unmet needs in rehabilitation?

 

Do some of these require new approaches from science and engineering?

 

Do some of these require new approaches from social and behavioral sciences?

Question 3:

What types of research are needed?

Question 4:

What are the problems that could interfere with developing and improving rehabilitation science?

Question 5:

What would be the best strategies for achieving the necessary level of research and professional expertise?

volved in rehabilitation—professionals from different disciplines, researchers, trainers, and consumer groups Although there was very little overlap in the responses from the different groups, some themes did appear 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

Summary of Responses to Focus Group Questions

In response to the first question, focus group participants identified several recent government initiatives as good developments for the field of rehabilitation NCMRR's new funding mechanisms and NIDRR's application emphasis were mentioned as improvements in federal administration The NIDRR Spinal Cord Injury Model System is a valuable example of how investments in centers of excellence can have an enormous impact on improving clinical care. Finally, the availability of training programs from NCMRR and the recent gathering of all the NCMRR trainees indicates growing cohesion in the field.

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Some problems with federal programs were also recognized. In general, it was felt that not enough programs are funded to handle clinical studies, due to expense. 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.

There was also concern about health care delivery. Some felt that insurance companies currently dictate the standards of patient care, relying on nonprofessionals and economics rather than the expertise of health care professionals. A solution for this is to have health care professionals set the standards of care, which would provide patients with an appropriate quality of life. The dilemma of how decisions will be made about those disabling conditions that affect only small number of individuals also caused some concern. The major issue pertains to researching the condition with so few subjects available. A possible solution might be to sponsor consensus conferences (1) to discuss the state of the art, (2) to determine whether consensus can be reached, and (3) determine where to concentrate resources. Clinical practice guidelines and consumer information might also be developed.

Some felt that the current system lacks real opportunity for research within rehabilitation science. A limited mentoring system, scarce career opportunities, and a paucity of funding all restrict the amount of research. There is little research focusing on (1) the environment as a determinant of disabling conditions. Some also felt that (2) prevention does not receive the attention it deserves. Presently there are no means for identification, screening and public education of at-risk groups, for example, the elderly for falls. Additionally, primary prevention or prerehabilitation is not reimbursable despite the need to identify medical conditions before they cause a problem.

The second question addressed unmet needs, and participants identified education as one such need. Education at the onset of disability should not take place in so short a period of time, but instead, it should imitate physician training: A long-term model for learning that involves simultaneous instruction and experience. Many barriers to independent living do not develop from a want of services, but from a lack of knowledge about available resources in the community.

There also needs to be a better interface between rehabilitation and education. The primary and secondary school systems are dealing with problems which had been handled by pathologists, and therapies de-

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

signed for laboratory or office situations are being transferred to school settings and conducted by people with training in special education.

Rehabilitation needs evaluation of efficacy and cost effectiveness of surgical and behavioral treatments. Especially in regard to assistive technology, treatment efficacy must research both the efficacy of the device itself and the process of teaching the person to use the device. Industry needs inducements to bring down the costs of technological equipment for those with disabilities. Often, technology does not reach the consumer because of the costs associated with possible liability, or because only a limited number of devices are needed to serve those with a specific disability.

Some of these needs require new approaches from science and engineering. Current rehabilitation models tend to see rehabilitation as the process encompassing only recovery from acute injury. Re-rehabilitation, as defined by Frederick Maynard, envelopes rehabilitation as a dynamic process, with an understanding that people with a disability are at heightened risk of secondary conditions. 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.

Some of these needs require new approaches from social and behavioral sciences. There is a need for measurement studies that capture the issues beyond impairment. The Functional Independence Measure is a start, but does not look at the factors that support community integration. Some felt that part of the problem is that Behavioral Medicine is largely missing from current research activities. Psychosocial issues are very important, and individual outcomes measures should be closely tailored to the individual's psychology. There is a real need for Behavioral Medicine to be integrated into medical education and rehabilitation training, and for long-term care to take psychosocial needs into account.

The third question addressed current needs in research. Many felt that secondary conditions themselves need to be better defined and understood, especially the risk factors involved, the timing of the onset of certain secondary conditions, and the interventions necessary to prevent or treat these efficiently. Research of secondary conditions should not be limited to the frequency and time frame of the occurrence, but should include subgroups, in order to get a better understanding of how the disabilities affect specific sets of people. Rehabilitation Science needs lon-

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

gitudinal studies that determine the impact of conditions over time, and studies that bridge the levels of pathophysiology to disability. These studies should also focus on the time in life at which disability occurs, as it impacts outcome. This could also involve aging with a disability, specifically the simultaneous declines in cognitive, auditory, and visual functioning which may accompany aging.

Rehabilitation also needs research into the environment. The effects of different kinds of family support and health care delivery patterns were identified as worthy subjects of research. Scientists should also investigate how capacities can be developed instead of restored, making progress toward higher levels of functioning that may not have existed prior to impairment. Finally, one of the largest unmet research needs is how to measure unmet needs of individuals with disabilities, especially the "unserved" population.

The fourth question dealt with problems that could interfere with developing and improving rehabilitation science. 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. In academe, rehabilitation is "applied" science and often has "second class citizen" status. This perception about rehabilitation needs to be changed. In addition, a poorly understood taxonomy for rehabilitation and poor communication among disciplines and the disability community contribute to the slow development within rehabilitation.

Dissemination of rehabilitation-related information was also cited as a major deterrent to better rehabilitation. First of all, general dissemination is not adequate to reach the grass roots level. Compounding this is the fact that critical information comes too quickly to the individual and the family at the initial onset of the disabling condition; they simply cannot retain and therefore utilize the material. "Survivors' Councils" may be one solution to this, but frequently, the information needed to identify patients and their families is not available, which is another barrier to community development and education. Another solution is to disseminate information better via a variety of sources, for example, the Internet. Independent Living Centers (ILCs) could also serve as a valuable tool for informing consumers, but they are largely isolated from other resources. Frequently, contacts in housing accessibility associations are not known, and often ILCs, Community Wellness Centers, and Rehabilitation Centers need a go-between. Whether the problem is a lack of services or a lack of coordination and dissemination, it was felt that

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

most settings can only currently offer fragmented resources to uninformed consumers. Community development should be a major goal of rehabilitation science so that the community itself becomes a tool for each individual's long-term rehabilitation.

The final question asked participants to identify the best strategies for achieving the necessary level of research and professional expertise. Some mentioned infusions of federal research dollars: A large investment in rehabilitation research would change the academic and clinical institutions according to need. In education and training, long-term care and prevention should be the focal points of a new paradigm. Also, a decrease in the teaching loads of rehabilitation faculty would allow more time for research. The teaching loads are too high and need to be decreased if research productivity is to increase. This could occur if more grant funding was available.

Dissemination was also identified as a means of developing research. Fostering the sharing of research results in interdisciplinary journals and scientific conferences, rather than limiting publication to strictly professional publications, would aid communication. A rehabilitation world wide web site that links scientists from different disciplines to the issues, questions, resources, and needs of persons and communities for knowledge to guide practice and design to limit disability, and that facilitates career mentorship for faculty, researchers, and scientists. Some felt that the promotion of community awareness and building community networks of services and education is key to establishing a coordinated system of care for the people with disabilities. 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.

Private Organizations

The committee felt that it was important to get as much feedback as possible from individual consumers and small consumer groups. Because focus groups could not be held with each constituency, the committee designed a questionnaire to send to identifiable organizations that might have interest in rehabilitation science and engineering.

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×
Method

Questionnaires were mailed to approximately 500 private organizations. The National Rehabilitation Information Center provided a list of disability-related organizations with a national constituency. The questionnaires were sent along with a one-page description of the study, the committee roster, and a cover letter explaining the committee's purpose for the information.

The questionnaire consisted of 33 questions designed by the committee on issues raised in the initial focus group sessions (see Box A-6). The form identified unique issues or aspects of rehabilitation and asked the individual to rate the importance of each as a research, educational, or governmental priority in the current state of rehabilitation as a whole. The scale ranged from 1 to 7, with 7 being the most important or the most pressing need. Finally, the questionnaire contained several lines for the respondents to identify issues not addressed by the questionnaire.

Response and Analysis

The response rate was low: a total of 43 of 488 (less than 10 percent) of the questionnaires sent. Twenty-seven additional questionnaires were returned due to invalid addresses. Of those that did respond, there was little deviation from an average score of 5, with the maximum and minimum average scores very seldom fluctuating beyond ±0.7. To enhance the minor differences, the staff created a relative scale from 0 to 10 in which the lowest average score rated a 0 and the highest average score rated a 10. The other scores were then given proportional scores within this new scale. Figure A-2 illustrates this in a graph displaying the relative scores as a bar chart.

Highest and Lowest Priorities

Acknowledging some overanalysis and enhancement of the findings, the following is a list of the highest and lowest priorities identified in the survey of private organizations.

Highest Priority Concerns or Needs
  1. Determine what quality means to people who have and who are restricted in social participation (Question 5; Score: 5.85)
  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)
Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

BOX A-6 Questionnaire for Private Organizations

How important is it to

1

Attract basic and social scientists to rehabilitation?

2

Describe etiology, implications, and history of secondary conditions and their impact on the quality of life of people with disabling conditions?

3

Determine the effectiveness of models that coordinate resources and use a community health orientation to support the health and functional needs identified by the person requesting services?

4

Determine the impact of rehabilitation science on the health of communities?

5

Determine what quality means to people who have and was restricted in social participation?

6

Develop a system for career mentorship to build rehabilitation scientists?

7

Develop and test a rehabilitation model to guide research across a continuum from acute care to community and independent living?

8

Develop methods to determine the needs of people who are underserved?

9.

Establish center grants to foster interdisciplinary studies?

10.

Evaluate the effectiveness of rehabilitation models that focus on prevention of secondary conditions?

11

Expand focus on studies of the environment and social participation?

12

Expand training moneys to prepare rehabilitation scientists?

13

Explore long-term outcomes in programs that are medically focused compared to those that are client focused and give people with disabling conditions the right to make their own decisions?

14

Explore the use of community networks as integral components of rehabilitation?

15

Facilitate the use of telecommunication for dissemination from findings of rehabilitation science?

16

Facilitate the community as a tool for individuals to help in the restorative process and achieving their goals for independence?

17

Facilitate coordination and communication among federal agencies that support rehabilitation science?

18

Identify and classify barriers to services with the goal of building better systems of services?

19

Increase communication among the rehabilitation scientists and disability community?

20

Increase funding for rehabilitation research?

21.

Include independent living centers in studies to be a link to community resources and a mechanism to empower consumers?

22.

Integrate behavioral medicine (and rehabilitation science) into medical and allied health education?

23

Involve consumers in advisory committees to understand the needs and potential contribution of science to improving social participation of people with disabling conditions?

24

Increase the funding for qualitative and single case study designs?

25.

Provide vehicles for interdisciplinary communications among rehabilitation scientists and consumers?

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

How important is it to:

26.

Put more emphasis on transfer of information?

27

Establish means of supporting measurement studies across the continuum of rehabilitative services, including those provided in the community?

28.

Conduct longitudinal studies to determine implications of conditions over time?

29

Conduct clinical trials of applied technology?

30

Establish grant review committees that are oriented to the continuum of science, from pathology to disability?

31

Develop mechanisms to fund studies that address questions at the functional limitation, disability, and environmental levels?

32

Study issues of care givers to determine the needs and issues that relate to their quality of life as well as to the quality of life of the care recipient?

33.

Support collaborative grants and initiatives of individual investigators?

*Responses were marked on a scale of 1-7

FIGURE A-2 Responses to the survey of private rehabilitation organizations: scores on relative scale.

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×
  • Identify and classify barriers to services with the goal of building better systems of services (Question 18; Score: 5.66)
  • Increase communication among the rehabilitation scientists and disability community (Question 19; Score: 5.63)
  • Determine the effectiveness of models that coordinate resources and use a community health orientation to support the health and functional needs identified by the person requesting services (Question 3; Score: 5.63)
Lowest Priority Concerns or Needs
  1. Establish center grants to foster interdisciplinary studies (Question 9; Score: 4.56)
  2. Support collaborative grants and initiatives of individual investigators (Question 33; Score: 4.57)
  3. Increase the funding for qualitative and single case study designs (Question 24; Score: 4.62)
  4. Determine the impact of rehabilitation science on the health of communities (Question 4; Score: 4.63)
  5. Expand focus on studies of the environment and social participation (Question 11; Score: 4.76)
  6. Miscellaneous Activities

    The committee and staff also engaged in other activities to collect the pertinent information needed for this report. These activities ranged from obtaining necessary texts to conducting interviews with related agencies and programs. The Administration on Aging, for example, was contacted to discuss its methods and means for carrying out its charge. Former directors from pertinent agencies or programs were also contacted to collect other knowledgeable perspectives from people other than current government employees. Staff of committee members attended formal meetings conducted by such groups as the Subcommittee on Disability Statistics of the Interagency Committee on Disability Research and the NCMRR Advisory Panel. Finally, committee members or staff attended or made presentations to academic meetings and consumer groups, such as the Amputee Coalition. These activities put committee members and staff into contact with many different perspectives and ideas, all of which contributed to the whole of the report.

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Acknowledgments

Commissioned Papers and Other Written Contributions

"Participatory Action Research," "Demographics of Disability," and ''Summary of Information Sources on Disability and Rehabilitation Research," contributions from Christine Domzal

Conwal Inc.

"Technology Transfer," contributions from Betsy Phillips Tewey

Conwal, Inc.

"Federal Administration of Rehabilitation Research: An Overview and Outline," contributions from Jane 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.

Washington University

"Models of Service for People with Disabilities" contributions from Mary Ann McColl, Ph.D., OTR/C

Queen's University

"The Relationship of Vision and Impairment" contributions from Linda Hunt, M.S., OTR/C

Washington University

"The Relationship of Hearing and Impairment" contributions from Gerald R. Popelka, Ph.D.

Washington University

Invited Participants and Guests

Judy Auerbach, Ph.D.

National Institutes of Health

Laura Baird, M.S.

Institute of Medicine

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Praxedes Belandres, M.D.

Walter Reed Army Medical Center

Betty Jo Berland, Ph.D.

National Institute on Disability and Rehabilitation Research

David Beukelman, Ph.D.

University of Nebraska, Lincoln

John Bode

Sandia National Laboratories

Floyd Brown, Ph.D.

U.S. Department of Health and Human Services

Larry Burt

Centers for Disease Control and Prevention

Laura Cooper, J.D.

Attorney

Rory Cooper

Paralyzed Veterans of America

Francis V. Corrigan, EdD

National Institute on Disability and Rehabilitation Research

Dennis Chamot, Ph.D.

National Research Council

Gerben DeJong, Ph.D.

Medlantic Research Institute

Christine Domzal, Ph.D.

Conwal Incorporated

Pamela Duncan, Ph.D.

University of Kansas

Stephen Fawcett, Ph.D.

University of Kansas

Robert Felton

University of California at Los Angeles

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Janie Fouke, Ph.D.

National Science Foundation

Marcus Fuhrer, Ph.D.

National Center for Medical Rehabilitation Research

Bruce Gans, M.D.

Wayne State University School of Medicine

Lynn Gerber, M.D.

National Institutes of Health

John Goldschmidt, M.D.

Department of Veterans Affairs

Dorothy Gordon, D.N.Sc., R.N., F.A.A.N.

The Johns Hopkins University School of Nursing

Margaret Gray

Personal Assistant

Mary Harahan

U.S. Department of Health and Human Services

Karen Hein, M.D.

Institute of Medicine

Jim Jenson

National Research Council

Petra Johnson

Interpreter

Bob Knouss, M.D.

U.S. Department of Health and Human Services

Philip Lee, M.D.

U.S. Department of Health and Human Services

James Lieberman, M.D.

College of Physicians and Surgeons of Columbia University

Phillip Marion, M.D.

Robert Wood Johnson Fellow

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Maria Martino

U.S. Department of Health and Human Services

John Mather, M.D.

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.

National Research Council

James Reswick, Sc.D.

(retired) National Institute on Disability and Rehabilitation Research

Mark Rosenberg, M.D., M.P.P.

National Center for Injury Prevention and Control

Debbie Rothstein, Ph.D.

National Institute on Child Health and Human Development

Katherine Seelman, Ph.D.

National Institute on Disability and Rehabilitation Research

Valerie Setlow, Ph.D.

Institute of Medicine

Cynthia Shewan, Ph.D.

American Physical Therapy Association

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

Kenneth I. Shine, M.D.

Institute of Medicine

Joseph Sniezek, M.D., M.P.H.

National Center for Injury Prevention and Control

Suzanne Stoiber, Ph.D.

U.S. Department of Health and Human Services

R. Alexander Vachon, Ph.D.

U.S. Senate Committee on Finance

Richard Verville, Esq.

representing AAPM&R, AAP, ACRM

Richard Waxweiler, Ph.D.

National Center for Injury Prevention and Control

Alexandra Wigdor, Ph.D.

National Research Council

Dorrett Worrell

National Institutes of Health

Other Contributors

Jeanette 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

Suggested Citation:"A Data Collection and Analysis." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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Enabling America: Assessing the Role of Rehabilitation Science and Engineering Get This Book
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The most recent high-profile advocate for Americans with disabilities, actor Christopher Reeve, has highlighted for the public the economic and social costs of disability and the importance of rehabilitation. Enabling America is a major analysis of the field of rehabilitation science and engineering. The book explains how to achieve recognition for this evolving field of study, how to set priorities, and how to improve the organization and administration of the numerous federal research programs in this area.

The committee introduces the "enabling-disability process" model, which enhances the concepts of disability and rehabilitation, and reviews what is known and what research priorities are emerging in the areas of:

  • Pathology and impairment, including differences between children and adults.
  • Functional limitations—in a person's ability to eat or walk, for example.
  • Disability as the interaction between a person's pathologies, impairments, and functional limitations and the surrounding physical and social environments.

This landmark volume will be of special interest to anyone involved in rehabilitation science and engineering: federal policymakers, rehabilitation practitioners and administrators, researchers, and advocates for persons with disabilities.

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