CODI: Cornucopia of Disability Information
Using Knowledge and Technology to Improve the Quality of Life of People who have Disabilities:
Helping to improve the quality of life for people of people who have disabilities is an underlying goal of all stakeholders (i.e., those with a vested interest) in the field of rehabilitation. Stakeholders include researchers and research utilization specialists as well as clients, parents, service providers, educators, and policymakers. Researchers have sought to identify the best medical treatments and rehabilitation practices as well as disability prevention methods. Research utilization specialists have explored ways to effectively transfer research results from the research community to the user community. This study explores the state of the art in knowledge utilization and technology transfer efforts. It applies findings from multiple disciplines studying knowledge utilization to the field of rehabilitation. The study identifies an approach that could significantly advance efforts to produce and use knowledge and technology to improve the quality of life of people with disabilities.
Complexities of knowledge utilization:
Over time research utilization specialists have discovered that the process of getting research into practice is not simple. It is complex. Scientific knowledge does not evolve consistently, sequentially, and timely. It leaves gaps in knowledge; in some instances it helps create ignorance. Channels for communicating results of research (e.g., media, journals, libraries, change agents) reach different audiences in different ways and at different stages of readiness to receive this information. Once the researched information is received, understood, and deemed worthy of use it may be used in unexpected ways, not as originally envisioned or studied.
Changes in society add to the complexities of the knowledge utilization process in the rehabilitation field. They also add to the opportunities to significantly improve the process and to enrich the quality of life of people with disabilities. Changes in information access:
Advances in technology have enabled global communications. For the first time in history a war has been televised worldwide from its conception to its inception, from its beginning to its end. Viewers learned about the workings of Congress and the workings of the Defense Department. They learned about fighter planes, night vision technology, and chemical warfare protection. Everyone had access to the blow by blow accounts through the mass media. This knowledge raised fears and quelled fears; it unified and it divided; it enabled and it disabled.
Technology is providing citizens worldwide with more information and thus more choices. This vehicle for information is changing the way people think about work and the world, about life and relationships, about openness and secretiveness, about autocracy and democracy, and about war and peace.
Knowledge is now more accessible to all members of society: the upper class, the middle class, and the lower class; the young and the old; the abled and the disabled; the rich and the poor; the black and the white. Information made accessible through technology is empowering individuals to help change themselves and their environments.
Changes in societal roles and structures:
As some people become better informed they begin moving out of their dependent and passive roles. They question, they challenge, and they demand their rights to timely and quality services. They talk to congressmen and congresswomen about their plight and work to change legislation. They develop self-help groups to fill the gaps in professional services. They refuse to consume inferior, unsafe, or environmentally adverse products. They monitor and evaluate products and services. They develop co-operatives, credit unions, and bartering to show dissatisfaction with the marketplace. They even in some instances begin producing for themselves, their family, and their friends. Information access provides knowledge that can lead to action or retreat from the responsibilities associated with knowledge. The more independent and active roles consumers assume triggers changes in the roles and structures that seek to serve them.
As consumers, clients, patients, and students change so do those who serve them. Marketers begin focusing on consumers' needs and invite consumers to help envision and develop new products. Service providers begin planning with, rather than for, their clients. Agency administrators invite consumers to participate in advisory board meetings. Professionals begin making cross referrals to self-help groups and vice versa. People with disabilities begin directing their own independent living centers.
Organizations change structures as their consumers and employees become better informed and more independent. They decentralize. They permit entrepreneurs to coexist within their organizations. They structure employee-led quality circles and problem-solving sessions. They seek interorganizational alliances, partnerships, and collaborative efforts. Their leaders seek ways to renew the organization rather than merely institutionalize innovations.
Changes in knowledge production and use:
The research community is making shifts too. Social scientists are accepting as sound research a wider range of research methodology as well as the importance of interdisciplinary research, multiskills research, and participatory research. They are recognizing the need for creativity and flexibility in research methods to better address the complex issues facing individuals, institutions, communities, and countries.
More and more they are beginning to recognize the importance of involving the user in the research process. Using participatory or co-operative research methods, some researchers turn subjects into co-researchers involving them integrally in the entire research process: needs assessment, research questions, research design, research conduct, data analysis, interpretation of findings, and use. Funding sources involve potential users on peer review panels for research proposals and research scientists invite them to serve on advisory committees for their research projects. Such integrative efforts could, in time, lead to removing some of the most significant barriers associated with past research utilization efforts.
Barriers to research utilization:
One of the major barriers to research utilization cited frequently in the multidisciplinary literature is the two communities of researchers and of users. The users generally referred to are practitioners or policymakers. These communities with their differing languages, philosophies, theories, goals, and practices were seen as being alien environments. As alien environments, they require varied forms of linkages between them. Those linkages range from change agents to executive summaries, from information exchange programs to computerized information retrieval systems, from research reviews to consensus panels. The more users become actively involved in the total knowledge cycle (production to use to production, etc.) the better they will understand the researchers' community and vice versa. Over time the alien status could significantly lessen and one day even disappear.
In the rehabilitation field, people with disabilities who are recipients or former recipients of services have seldom been involved in all phases of the knowledge cycle. At a time when equal participation in education, employment, transportation, and so forth has been at the forefront of civil rights for Americans with disabilities that same right has not been significantly applied to knowledge production and use. Consumer movements have shown that active client participation is a factor in an effective rehabilitation system. If research is the framework for active participation in rehabilitation, then in many respects failure to acknowledge this right in the research arena serves as a vehicle for disempowerment.
A possible solution to the barriers:
The prosumer approach offers a solution to these barriers. The prosumer approach is a mind-set, a way of thinking about roles and relationships in the rehabilitation field in order to improve the quality of life of people with disabilities. The prosumer mind-set acknowledges the interdependency, viability, integrity, and worth of all stakeholders in the rehabilitation field. It acknowledges the abilities of people with disabilities; it affirms their right to self-determination and to equal participation in every government endeavor that affects their lives. That includes equal participation in their own rehabilitation process and equal opportunities to participate in the production and use of disability and rehabilitation knowledge.
The prosumer approach also acknowledges the importance of the practitioner in helping to develop research results relevant to service delivery needs. With guidance from researchers skilled in research design and the wide range of methodologies and with administrative encouragement, practitioners could contribute significantly to the body of knowledge in the rehabilitation field as well as help advocate for, and communicate needs of, people with disabilities who have difficulties doing so for themselves.
Like problem-solving models of research utilization and consumer-driven marketing, the prosumer approach emphasizes the importance of being responsive to the needs of the ultimate consumer, people with disabilities. Like the participatory research and co-operative research methodologies, the prosumer concept is characterized by shared responsibility and shared power among all stakeholders. Not all stake-holders will choose to participate; not all have the capabilities of participating at the same levels as others. However, they have the right to have their integrity and viability recognized as an important component to all phases of the knowledge cycle.
The prosumer concept is coined from the terms consumer and producer (Toffler, 1980:27 & 54). Consumers of research may be policymakers, practitioners, or people with disabilities, the ultimate consumers. Producers, in the traditional research utilization framework, have meant research scientists. In the prosumer approach for a given period of time, consumers become producers or they help produce; producers from time to time also consume. Neither gives up their full time roles of consumer or producer but at times they work so interdependently it is as if they were one.
The prosumer approach, like the participatory research method, is a challenge to the research community. It is a challenge to share power and responsibility. However, doing so can lead to an enriched role as a rehabilitation research scientist. It involves helping to educate others about the process of research and the safeguards that maximize the validity and utility of the studies. It means facilitating the process of research and research utilization. It means sharing the power and prestige with individuals who at one time were subjects but now are fellow participants in discovering answers to disability and rehabilitation questions.
After studying the multidisciplinary state of the art in knowledge utilization, this author has concluded that the prosumer approach can best address the major barrier in knowledge utilization and empower consumers. This conclusion came only after studying not only factors, strategies, and models in research utilization but also disability and quality of life issues. The conceptualization also evolved from exploring the history of knowledge utilization efforts in fields such as sociology, anthropology, psychology, and communications as well as in the rehabilitation field.
The eight chapters that follow allow the reader to discover the rationale as the author did. Chapter 1 sets the framework for applying knowledge utilization efforts to improve the quality of life of people with disabilities. The author juxtaposes disability constructs and quality of life parameters against the potential impact of knowledge utilization efforts. Chapter 2 overviews the history of scientific knowledge production and utilization. It identifies issues facing research utilization specialists today. Chapter 3 describes utilization practices in the federal rehabilitation and education programs: their strengths and weaknesses. Chapters 4, 5, and 6 provide updates on studies of factors, strategies, and models in knowledge utilization. Chapter 7 details the changing paradigms and trends summarized in this introduction. Chapter 8 describes the components of the proposed prosumer approach and how the National Institute on Disability and Rehabilitation Research could lead in the implementation of such an approach to knowledge production and use.
Other key terms:
The definitions of key terms used in this paper in addition to prosumer are defined next:
Facts, truths, or principles often associated with (but not limited to) an applied subject or branch of learning or professional practice;
Information or understanding based on validated,broadly convergent experience;
Reliably identified exemplary practice, including unusual know-how;
An item of information that a person certifies as valid by applying one or more criteria, or tests;
The findings of validated research. The knowledge may take the form of an idea, a product, a process or procedure, or a program of action" (Glaser, Abelson, & Garrison, 1983:2).
Dissemination is the wide distribution of information or knowledge by any of a variety of ways to potential users or beneficiaries.
Diffusion is the "process by which an innovation is communicated through certain channels over time among the members of a social system" (Rogers, 1983:34).
Technology transfer is "the conveyance or shift of the tools, techniques, procedures, and/or the legal titles thereto used to accomplish some desired human purpose" (Reisman, 1989:31).
Utilization or use "in its simplest form refers to the application of available knowledge or technology by a new user and, in some cases, to a new use" (Glaser, Abelson, & Garrison, 1983:2). Varying definitions of these and other terms can be found in the glossary section of this paper.