Chapter VIII: A Prosumer Approach For Disability And Rehabilitation Knowledge
Production And Use
I. THE PROSUMER APPROACH: A MINDSET
The world experienced unprecedented changes during the course of this
study. East and West Germany united. The cold war between Russia and the
United States ended. Communistic countries became more democratic. People
around the world watched a war begin and be fought in the Gulf. Civil rights
for Americans with disabilities became law.
Anticipated changes include, but are not limited to, a global economy,
cultural nationalism, and the rise of the individual. Information technology
has helped foster many of the changes. Technology has opened access to
information from around the world. People with and without disabilities can
readily download pertinent information from other communities and countries
directly into the home or business. Increased access to knowledge via
technology helps individuals take greater control over their lives, and
subsequently become empowered. All the recent and anticipated changes
represent power shifts. This, the last decade of the twentieth century, is the
decade for people with disabilities to become empowered, to have equal access
to, and full participation in, education, jobs, transportation, and to
improve their quality of life. The prosumer approach, gives them equal access
to and full participation in the production and use of disability and
rehabilitation knowledge that can help them better achieve their goals.
The prosumer approach builds on the recurring theme found in most
knowledge utilization or technology transfer models and studies of factors. In
fact because of this recurring theme, authors such as Glaser (1983) and Rogers
(1983), who synthesized factors studies, have stressed the interrelatedness
and interdependency of factors. That recurring theme is product and user fit:
user-compatibility, user-specific products, user-advantage, user-understanding
of the main finding, user-perceived complexity, user-trial of the innovation,
user-modifying of the innovation, user readiness, user ability, and/or user's
time and resources. The prosumer approach maximizes user involvement in every
phase of knowledge production and use. It builds on the concept of applying
scientific thinking at the practitioner level found in the progressive model
(i.e., scientist-practitioner or reflective practitioner) and at the ultimate
consumer level through participatory research, consumer-driven marketing, or
being a personal scientist in the self-help modality. The prosumer approach
builds on conceptual models that integrate instrumentalist (passive,
reproductive use of research information) and transactional paradigms (active
strategic use that transforms information) (Huberman, 1987) and that integrate
the varied components of a social system of knowledge (Holzner, Dunn, and
Shahidullah, 1987).
The time is ripe. More consumers are becoming assertive and mobilized
for action on their own behalf. Such self definitions enable practitioners to
alter their role definitions and enable organizations to restructure service
delivery. Changing roles and structures in practice can lead to changes in
roles and structures in research and in research utilization. Two
communities, so alienated in the past, could become more unified by a common
vision, a common mission, and a common mindset.
A. COMMON VISION, MISSION, AND MINDSET
The common vision that unites is a belief that people with
disabilities have the right to self-determination, to live independently, and
to access the same quality of life as any other citizen in the United States.
The common mission for all stakeholders is to identify, develop, expand,
refine, and/or use the resources--human, physical, financial, technological,
spiritual, and intellectual (i.e., knowledge)--that most effectively and/or
efficiently enable people with disabilities to maximize their rehabilitation
and to exercise their rights and responsibilities as citizens.
The prosumer approach is a mindset, a common way of looking at roles
and relationships in order to help people with disabilities improve the
quality of their lives. When rehabilitation professionals, rehabilitation
scientists, and people with disabilities begin thinking of themselves as
prosumers, collaborators in rehabilitation and collaborators in knowledge
production and use, my expectation is that restrictive boundaries among
clients, practitioners, and researchers will begin to dissipate. The prosumer
mindset acknowledges the interdependency, viability, integrity, and worth of
all stakeholders in the rehabilitation field. The prosumer mindset encourages
all groups of stakeholders to help build the body of disability and
rehabilitation knowledge and technology upon which rehabilitation and
independent living depend.
B. THE PROBLEM
People with disabilities and practitioners do not share with
rehabilitation scientists a sense of responsibility for building the knowledge
base that can lead to improved quality of life for people with disabilities.
They have a wealth of information that is not being tapped by researchers and
is not being integrated with the scientific body of disability and
rehabilitation knowledge. Underused resources leaves gaps in knowledge; that
is a problem.
Scientific knowledge does not have all of the answers. There are many
areas of research that can be conducted in a co-participatory fashion by
individuals with varying degrees of knowledge about research methods. With
advances in information technology such as statistical software packages for
the personal computer, even statistical analysis is less foreboding and less
of a deterrent to novices in the research arena. With advances in journal
writing (Progoff, 1974) and experience in using personal accounts to influence
legislation as well as to provide foundations for research studies, rationale
for excluding practitioners and clients from the process pale. In the light of
landmark legislation giving civil rights to Americans with disabilities, it is
time to also identify their right to participate fully in knowledge production
and use. Beyond rights, contributing to the body of knowledge is one way to
reciprocate for help received. Reciprocity helps restore psychological equity
lost during helping transactions and can enhance self esteem (Fisher, et al,
1983).
In the late 1970's and 1980's the National Institute on Disability and
Rehabilitation Research (NIDRR) began adding people with disabilities to peer
review panels for grant proposals and requiring proposals to identify
consumer's needs. They also began requiring Research and Training Centers to
add consumers to advisory committees. They have invited consumers to public
hearings and to respond to proposed priorities in the Federal Register. What
they have not done is to educate and encourage all stakeholders to share
responsibility for producing and using disability and rehabilitation
knowledge.
A second related problem is that dissemination and utilization efforts
in NIDRR have not yet become fully integrated with the knowledge production
process. It is still treated as a stepchild to the process rather than an
integral part of it. NIDRR does require consumer needs assessments and
dissemination plans in research projects. What it does not do, however, is
build utilization into key research projects; it stops at dissemination. To
build utilization into appropriate projects requires changing the length of
those research projects and the periods of competition. In some instances,
longevity must be assured to enable adequate development in a given area of
study for better utilization. For example, current three-year projects in
appropriate research areas, if successful, could be given additional monies
for two to three years to carry out proposed or revised utilization plans.
Research and Training Centers working in areas of high and frequent changes
such as information technology or aides, likewise could be given extensions
without re-competing for an appropriate time-period.
Current research dissemination directions advocated in the federal
Department of Education for education (Klein & Gwaltney, 1990) and under
consideration for rehabilitation do address some of the complexities of the
research utilization process. They are forward thinking and comprehensive
within the dissemination infrastructure. They offer an easy to follow
delineation of dissemination functions: spread, choice, exchange, and
implementation. They fall short, however, by being limited to the
dissemination infrastructure. The problems besetting effective knowledge
utilization lie in the mindset with which it is approached and not in the
many strategies and tactics for implementation.
II. THE PROSUMER APPROACH: COMPONENTS & NIDRR'S ROLE
The components of the prosumer approach to knowledge production and
use consist of acknowledgement of prosumers, prosumer priority setting for
research allocations, interactive knowledge production and use,
legitimization and synthesis of prosumer knowledge, educating and sponsoring
consumers and practitioners in knowledge production and use, equal access to
knowledge, user responsibility and control of the use of developed knowledge,
identification and use of ignorance, and flexibility.
PROSUMERS:
'Prosumers' share the responsibility for producing and consuming
disability and rehabilitation knowledge. They do so in varying degrees and in
varying ways. For some, knowledge production is a career for which they are
compensated while for others helping in knowledge production is voluntary
with no monetary rewards. For some this responsibility is carried out with
the backing of institutions of higher education and for others it is carried
out through self-help organizations, professional associations, public and
private rehabilitation programs. Some prosumers choose to contribute more at
the beginning or end of the process while others prefer being involved in
every phase of the process.
Prosumers include people with disabilities (i.e., clients, students,
patients, rehabilitants, and alumni), family members or significant others,
practitioners, educators, policymakers, administrators, and rehabilitation
research scientists. The term prosumer also applies to the organizations,
institutions, businesses, agencies, etc. who individually or collaboratively
have an interest in helping to produce and consume disability and
rehabilitation knowledge.
NIDRR's role for this component of the prosumer approach is twofold:
(1) to promote the philosophy of shared responsibility for knowledge
production and use among prosumers and (2) to provide opportunities for all
interested prosumer groups to understand and contribute to the body of
disability and rehabilitation knowledge.
PROSUMER PRIORITY SETTING FOR RESEARCH ALLOCATIONS:
All prosumer groups have the opportunity to participate in setting
priorities for research resource allocations. Knowledgeable prosumers
participate currently in up to four ways: (1) by responding to proposed
priorities in a given issue of the Federal Register, (2) by participation in
public hearings on long-range plans or research needs, (3) by visiting and
talking to staff at the National Institute on Disability and Rehabilitation
Research (NIDRR), National Council on Disability, or the Interagency Committee
on Disability, and (4) by conducting and submitting research reviews that
point to gaps in knowledge. Under the prosumer approach, an added role for
NIDRR is to inform consumers and practitioners of these ways of participating
in priority setting.
The prosumer approach adds one other avenue of participation in the
priority setting process. Leaders of coalition bodies of prosumer groups
(e.g., coalition of people with disabilities; National Association of Research
and Training Centers) serve on a priority setting panel to assist NIDRR staff
in allocating annual resources and in recommending priorities in broad areas
for future years. This serves two purposes: to promote unified activities
among the many diverse organizations of people with disabilities and to give
the unified leaders a greater voice in the final resource-allocation
processes.
INTERACTIVE KNOWLEDGE PRODUCTION AND USE:
The interactivity component applies in three ways: (1) knowledge
production to use and use to production through a feedback mechanism; (2)
prosumer to prosumer during the production and use process; and (3) prosumers
to and from information systems and resource centers that house the body of
disability and rehabilitation knowledge and technology.
Under the prosumer approach NIDRR promotes the interactivity between
production and use by sponsoring five-year projects that not only conduct the
research and disseminate results but also introduce the results directly into
an appropriate setting, (e.g., service delivery, policymaking). That use may
be adapted use or even rejected use but the research group will document the
interactions and responses from the selected user setting. Extended time for
studies is only one aspect to integrating production and use. Prosumer
advisory groups to such research projects can help assure applicability of the
research to the selected setting.
NIDRR can promote the prosumer to prosumer interaction by sponsoring
participatory research projects in service delivery settings, self-help
organizations, and communities working for environmental or attitudinal
changes on behalf of people with disabilities. They can also require that
research and training centers not engaging in participatory research, continue
to have prosumer participation on an advisory committee or focus-group basis
during the research production and use phases.
To enhance interactivity between prosumers and information service
systems or technology resource centers, NIDRR can base future funding on the
submission of progress and final reports of studies to designated national
information centers. They can also assess use of information systems by
applicants for funds in their literature reviews and documentation of the
needs.
EDUCATING & SPONSORING CONSUMERS & PRACTITIONERS:
Educating consumers and practitioners (two groups of prosumers) in
ways to contribute to knowledge production and use is essential to the success
of the prosumer approach. NIDRR's role in this component includes sponsoring
educators and research facilitators to train interested leaders of consumer
groups and practitioners in the essentials for preparing useful case studies,
local surveys of needs and problems, participatory-observation studies,
journal summaries, reflective practice accounts, and/or autobiographic
disability experiences.
As a followup to the education process, NIDRR would sponsor
practitioners in conducting case studies or caseload studies on a short-term
basis (e.g., 90-120 days) in either an integrated-with-routine approach or
time-off-from-routine approach. Such studies could also include reflections on
practice.
NIDRR would also sponsor coalition groups among disability
organizations to conduct disability specific needs assessments and community
environmental surveys and/or collect anecdotal material from journal summaries
or autobiographical accounts.
LEGITIMIZATION & SYNTHESIS IN KNOWLEDGE PRODUCTION AND USE:
In the scientific world paradigms, generalizations, and principles on
which to base practice derive from consensual validation of phenomena studied,
replicated, and surviving the falsification process. The prosumer approach
continues formally and informally legitimizing the research results from
reputable studies and exemplary practices as contributions to disability and
rehabilitation knowledge.
Under the prosumer approach, NIDRR assists in determining reputable
studies first by publishing criteria for assessing quality in studies from a
wide range of research methodologies including participatory research, case
studies, and participant-observation studies. Utility as well as validity
should be included in the criteria.
NIDRR also sponsors a national consensus panel(s) to review results
from several related studies in a priority area and to recommend areas of
consensus among the findings. The panel process includes use of assistants for
compiling research summaries for panelists' review and of convening a group of
prosumer reactors to the panelists' recommendations. The panel(s) further
legitimize the work of prosumers.
In addition to the consensus panels, integration and synthesis of
research results on a given topic occur at several major junctures in the
prosumer approach: meetings, publications, and electronic bulletin board or
data base systems. Meetings of the Interagency Committee on Disability and
Rehabilitation Research and national meetings of coalition groups or
professional and consumer organizations provide opportunities to integrate the
latest knowledge. Preservice and inservice educational programs integrate new
research into curricula and into workshops. State-of-the- art studies (using
meta-analysis when appropriate) and Rehab Briefs provide, along with topical
journal articles, printed syntheses. National information service system(s)
provide abstracts, summaries, and directories linking resource knowledge.
Regional Information Exchanges represent groups actively searching for
solutions to problems experienced in varous service delivery settings. Their
staff actively search for syntheses to use or when lacking, search the
exemplary practices and their knowledge bases for answers.
NIDRR can add to the integration of knowledge produced in a given year
in several ways: (1) by summarizing knowledge resources developed in that
year by topics; (2) by distributing summaries to designated national
information centers for disability and rehabilitation knowledge who in turn
notify their constituencies of the availability of reports and summaries; and
(3) by encouraging all prosumer groups to integrate the summary information
into their own plans, policies, and programs where appropriate.
EQUAL ACCESS TO KNOWLEDGE:
Research produced with public funds is publicly owned. The public has
a right to see what their money produced. Prosumers have a right to
information that can help improve the quality of life for people with
disabilities. While in other circles, information is a commodity, in the
service industry with lives at stake, that cannot be. Therefore, in the
prosumer approach all prosumers using public funds for research are not only
required to submit to a designated national information center summaries of
findings and how those findings were derived but failure to do so could
jeopardize future funding in a subsequent funding cycle. What other uses are
made of the research to further one's career or organizational positioning in
the funding process is up to the prosumer.
Equal access at the designated center means electronic, phone, and
mail access for those geographically dispersed. It means nominal costs for
those who can ill afford to purchase the materials. It means large print,
braille, or taped formats for those with limited sight. It means TTY's or
interpreters for people who are deaf or translation services for people who
are culturally disadvantaged when spoken or written English is a second
language.
USER RESPONSIBILITY AND CONTROL OF THE DEVELOPED KNOWLEDGE:
Besides involving potential users in the production process, the
prosumer approach promotes the integration of production and use in still
another way: by recognizing the continuum of usages, by promoting user
responsibility for remaining consistent with the producer's intended usages,
and by giving control of the usage to the user. Use of newly developed
knowledge may mean reinvented, converted, adapted, modified, partial, or even
rejected use. While users should be encouraged to try the model or innovation
out as designed first and then modify, that is not always practical nor
desireable. The user, however, does have the responsibility to understand the
innovation or research results, how it was derived, and its intended uses
before venturing too far afield from the intended use.
FLEXIBILITY:
As part of the prosumer model NIDRR staff have the responsibility to
stay abreast of national and international trends and events and to engage
prosumer coalition leaders or their designees in helping make necessary
revisions to plans, policies, and practices. Staff have the responsibility
for recognizing and using scientific ignorance as it relates to disability and
rehabilitation. They also have the responsibility for being responsive to
public reactions, budget reductions, and political changes that can affect the
production and use of research among selected audiences.
III. THE PROSUMER APPROACH: ROLES OF OTHER ORGANIZATIONS
Rehabilitation Services Administration:
The Rehabilitation Services Administration (RSA), in the prosumer
approach, helps identify gaps in knowledge from national program evaluations
and needs assessments. They sponsor the Institute on Rehabilitation Issues
studies, demonstration, experimental, and innovative projects as well as
curricula development projects that supplement research sponsored through
NIDRR. RSA submits, and encourages prosumers to submit, research results to
the designated national center for rehabilitation and disability information.
They annually conduct national needs assessments or program evaluations and
submit reports to the national center. They interpret research in the
framework of national service delivery efforts and make special efforts to
integrate research into RSA's plans, programs, and policies.
STATE REHABILITATION AGENCIES WITH CSAVR/NCSPB:
As active participants in the prosumer approach to knowledge
production and use, state rehabilitation agencies can contribute to the
priority setting process by conducting state program evaluations and needs
assessments. By conducting these annually and submitting the results to the
national center for access by all prosumers, they add to the body of knowledge
and of ignorance. Interpreting research from a statewide service delivery
perspective and annually integrating research results into state plans,
programs, and policies can help improve services and hopefully outcomes for
people with disabilities.
PRIVATE AGENCIES WITH NARF/NAC/ETC.:
Private agencies and the professional organizations that work closely
with them can identify gaps from the private perspective through program
evaluations and needs assessments. They could conduct studies specific to
their unique but related rehabilitation needs. Of course, all studies would be
submitted to the national information center on disability and rehabilitation
and NIDRR to further the state of the art and to share with other prosumers.
They would interpret the research from their organization's perspective and
integrate relevant results into their organizations' plans, programs, and
policies.
PROFESSIONAL ORGANIZATIONS:
Professional organizations in the prosumer approach would identify
gaps in professional bodies of knowledge and standards of practice. Annually
they would assess gaps or progress in meeting those gaps and submit a report
to the national information center on rehabilitation and disability. They
would interpret research from the framework of professional standards and
knowledge for improved service delivery. They would integrate research
results through conference presentations, publications, exhibits, and training
programs. They would actively work to apply the results to efforts to remove
attitudinal and physical barriers to rehabilitation and quality of life for
people with disabilities.
DISABILITY/FAMILY ORGANIZATIONS:
Disability and parent organizations, in the prosumer approach, would
have the role of identifying problems in survival and in quality of life. If
each organization would annually study, document, and submit a report to the
national information center on one or more problems or solutions found to
specific problems, they could add significantly to the common body of
knowledge. When it comes to interpretation of research results, they would
use the framework of their life experiences as a person with disabilities or
a family member of a person with disabilities. They would seek to integrate
relevant research into modified or changed self-help activities and advocacy
efforts toward barrier removal.
UNIVERSITIES/COLLEGES:
RTC/REC/R&D/FIR/INNOVATIVE/FELLOWSHIPS
Research programs such as the Research and Training Centers and the
Rehabilitation Engineering Centers based at unversities and colleges have a
major responsibility in the prosumer approach. Not only are they the primary
researchers but also the facilitators of the research conducted by others.
Their role must include identification of gaps in the disciplinary and
interdisciplinary bodies of knowledge related to disability and
rehabilitation. It must also include issues identification and the
identification of multiskills versus multidisciplines needed to address those
issues through research. The national, regional lab and group studies as well
as technology development would be a primary contribution to the literature
and resources from these groups. The university-based researchers would
interpret research in the framework of prior research in disability and
rehabilitation. They would integrate the new knowledge into the scientific
body of applied knowledge on topics they have focused upon. Under the prosumer
approach, they would also actively seek out experiential evidence to use in
designing scientific studies and verifying collective judgments of service
providers and consumers.
PROFESSIONAL PREPARATION PROGRAMS:
Professional preparation programs sponsored by the Rehabilitation
Services Administration can help promote learners becoming involved in
research priority setting processes. They can help identify gaps in education,
practice, and new technology access and use. They can design, conduct, and
analyze research related to curricula including courses, practica, and
instructional methodologies. By submitting curricula and course studies to
the National Clearinghouse of Rehabilitation Training Materials they can
spread the availability of resources for improving curricula at the pre-work
and post-work levels of education and training.
REGIONAL CONTINUING EDUCATION PROGRAMS (RCEPS):
Regional Continuing Education Programs can identify gaps in education,
practice, and new technology access and use to contribute to the research
priority setting process. They can conduct educational needs assessments and
training evaluations which could contribute to the resources available from
the National Clearinghouse of Rehabilitation Training Materials. They would
interpret research from the framework of continuing education and service
delivery and integrate new innovative findings into their continuing education
curricula. They also can help train consumers and practitioners in
self-observation techniques.
CONGRESS:
Congress has a role to fill in the prosumer approach also. They
legislate to help fill the research, service delivery and social policy gaps
that affect the survival and quality of life of people with disabilities.
They should be aware of the kinds of studies being undertaken and mandate that
all studies from public funds be available in summary report form and progress
report form in a designated national or international disability and
rehabilitation repository such as the National Rehabilitation Information
Center. Their interpretation of research results from annual summaries
developed by NIDRR would be from the framework of societal and global issues.
They would help integrate research into laws and regulations.
NARIC/NCRTM/ABLEDATA:
The National Rehabilitation Information Center (NARIC) has the
responsibility of collecting, classifying, storing, and retrieving research
reports and other rehabilitation literature. In the prosumer approach they
are responsible for making their holdings accessible to all prosumers in the
forms they best can use. They also have the responsibility of listing and
circulating summary reports of research conducted by each differing prosumer
group. They interpret research results in terms of the NARIC collection of
literature and related national collections of rehabilitation and disability
information. They maintain an archives illustrating the growth of the field
of rehabilitation. They provide reference and referral services.
The National Clearinghouse on Rehabilitation Training Materials
provides similar services with an emphasis on curricula, courses, and
audiovisual aids for educational purposes. The Adaptive Equipment Center
collects, stores, and retrieves information on the national assistive devices
and technological resources.
REGIONAL INFORMATION EXCHANGES:
Currently, the Regional Information Exchanges help identify gaps in
knowledge and barriers to successful practice. They identify criteria for
identifying exemplary practices. They assess practices to promote as exemplary
and help structure interfaces between innovators and innovatees. That
interface may be in the form of literature, phone contacts, face to face
contacts, or via other media. RIE's interpret the research from the framework
of the user organization's needs and concerns. Their main goal is to integrate
research into practice settings. Their future goal may be to facilitate
education and integration of consumers into all aspects of the knowledge cycle
until consumers are truly prosumers.
INTERNATIONAL INFORMATION EXCHANGE PROGRAMS:
The participants in the international exchange programs help identify
research priorities pertinent to international problems. They sponsor
research efforts in other countries by Americans and disseminate the results
in America. They make research results available through the National
Rehabilitation Information Center and through their own promotional efforts as
in the past.
NATIONAL COUNCIL ON DISABILITIES:
As a NIDRR & RSA oversight body and in the framework of the prosumer
approach, the National Council on Disabilities (NCD) funnels concerns of
people with disabilities into the priority setting panel. NCD is aware of
ongoing research addressing concerns. They would encourage prosumers to submit
summaries of research completed to the designated National Rehabilitation
Information Center. NCD interprets research results from the framework of
national needs of people with disabilities. Their integration role would
include integrating research into the national disability plans, policies, and
oversight activities.
IV. THE PROSUMER APPROACH: BENEFITS & BARRIERS
A. BENEFITS
The 'prosumer' approach to knowledge utilization taps the best from
knowledge utilization models such as the progressive clinical model, the
integrated model, the knowledge system model, and the concerns-based adoption
model. It highlights the product and user fit theme underlying studies of
factors by making users an interdependent part of the entire process. It
takes into account the broadened social construct to disability given in the
recent Americans with Disabilities Act. More specifically, the 'prosumer'
approach includes the missing parts in other models: people with disabilities
and their service providers integrally involved with social scientists in the
control of research design, methods, implementation, and to some extent,
resource allocations. In its simplest form the 'prosumer' approach embeds
knowledge in action at the organizational and individual level for service
providers and disabled consumers as well as policymakers and other
researchers. Because of the increased utility and compatibility of the
research products created by prosumers, i.e., a better fit, I expect
significant increases in the use of research.
B. POTENTIAL BARRIERS TO THE PROSUMER APPROACH
For studies involving consumer-directed organizations, self-help
groups, and conclaves of consumers, this approach is definitely workable.
Some organizations are conducting environmental surveys now and submitting
findings to mayors and community committees. How to involve individuals who
are cognitively impaired as well as physically impaired will challenge the
best minds. However, it is possible to do. Autobiographical experiences of
disabled individuals have already entered into the stream of disability
research. Journal writing by those clients capable of doing so can contribute
to self-assessment and self-adjustment; selected excerpts by clients from
their journals can contribute to the body of knowledge.
Researcher-facilitated studies rather than researcher-controlled
studies will take longer but may produce greater longer-termed benefits.
Redistribution of funding within NIDRR to assure groups of consumers, their
significant others, and service providers have equal opportunities and access
to knowledge production and use requires sharing not only power and control
but limited financial resources. Not all researchers or the institutions they
represent are likely to want to share limited resources. Reeducation of
researchers and other prosumers as to how they can work together most
effectively for the benefit of all concerned will need to take place.
Convincing practitioners of the importance of reflecting on their
work and documenting their reflections must begin in the professional
preparation programs. Training in how to conduct single-subject studies
missed in the preservice levels will need to occur at the inservice level to
help them conduct single subject studies. Supervisors and administrators need
to encourage professionals to do this by allowing time and providing needed
resources.
Integrating scientific and experiential knowledge will not be easy.
However, the rewards of wholistic approaches to understanding a phenomena will
be evident in time. First person accounts can be provided without cultural
biases, personality characteristics, places and times of training, and
subjective interpretations invading the conclusions. How to do this
effectively will need to be understood. Consumers who have cognitive
disabilities present another problem in pursuing involvement in research
activities. They have their stories to tell, their perceptions of the world,
and how they are treated in the world. Helping them contribute significantly
will be a challenge but one that can be met with creativity. The key will be
in using the varied forms of research as pieces to the puzzle.
V. Implementing the model
Implementation of the prosumer approach will require time, attitude
change efforts, and resources. Implementation begins with creating an
environment receptive to the prosumer approach. That would take a minimum of
two years. Years three and four should focus on setting the structure in
place for the model. By the fifth year implementation should begin. The
objectives supporting each goal follow:
Years 1-2
Goal: Create an environment for receptivity to the prosumer approach among all
potential prosumers.
Objectives:
1. Review and refine the proposed prosumer approach--rationale,
components, roles, and goals--with NIDRR, RSA, and OSERS staff.
2. Review the refined prosumer approach with NIDRR grantees and
modify as needed.
3. Review the modified prosumer approach with representatives of
disability groups, centers, and organizations. Refine further as
needed.
4. Conduct regional public hearings.
5. Seek public comments through the Federal Register.
6. Finalize the prosumer approach.
Years 3-4
Goal: Set up the structure for implementing the prosumer approach.
Objectives:
1. Establish criteria and procedures for selection
and participation of coalition leaders in priority setting
for resource allocations.
2. Establish integrative mechanisms between the knowledge
production and use process, among prosumers during the
process, and between prosumers and information service systems.
3. Establish integrative mechanisms that make available the
continuum of quality knowledge--scientific and experiential--on
a given disability or rehabilitation topic.
4. Develop the followup mechanisms to assure that all government
funded disability and rehabilitation studies are available and
equally accessible to all prosumers.
5. Establish mechanisms for educating and promoting prosumer
responsibility for knowledge production and use and that
respects the integrity of the study.
Year 5
Goal: Begin implementing the prosumer approach.
Objectives:
1. Involve representatives of all prosumers in the beginning stages.
2. Publicize successful implementation at major stages along the way.
3. Evaluate progress and make necessary changes as needed to assure
the intent of the prosumer approach continues.
SUMMARY:
After studying the multidisciplinary literature on knowledge
production and use, I have concluded that what is needed to improve knowledge
utilization efforts in the rehabilitation field is not a new strategy,
technique, or tool. What is needed is a perceptual shift, a change in the
paradigm within which all knowlege utilization efforts have been grounded.
Consumers are better informed, more independent, more supported by
peers, and more skilled in identifying the strengths and weaknesses of current
systems. They seek empowerment; with that power comes responsibility. Now is
the time for NIDRR to channel that desire for empowerment into a partnership
in knowledge production and use. By fostering shared responsibility for
knowledge creation and use among consumers, practitioners, and rehabilitation
scientists, all prosumers under NIDRR's leadership can more effectively make a
difference in the life quality of millions of people with disabilities.
Rehabilitation research scientists alone cannot produce sufficient
timely disability and rehabilitation knowledge to significantly improve the
quality of life of all people with disabilities. Gaps in scientific knowledge
exist that scientists cannot fill partly because of low levels of funding,
partly because of insufficient personpower, and partly because of the nature
of the knowledge gaps. Personpower can be increased by promoting
responsibility for knowledge production and use by service providers and
disability groups as well as by scientists. The nature of the knowledge
missing can be provided by involvement of all parties as equal partners in
knowledge production and use.
Scientists know scientific methods; people with disabilities know
about their disability and its effects on functioning. Practitioners know
rehabilitation techniques and practices; policymakers know the politics and
structures involved in resource allocation and priority setting. Each group
has a contribution to make and each group needs an equal voice (i.e., power
and control) in the resource allocation and research priority setting process
to assure knowledge produced by prosumers is used.
As implementation of the prosumer approach begins, knowledge
production and use join like the two-sided Roman god Janus at the beginning of
an exciting new era. To keep the status quo is to keep the limits dictated by
the two-communities mind set. It is time to change the paradigm. Then, and
only then, when knowledge production and use become integrated by prosumers,
can significant change in utilization efforts result.
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