APPLIED SCIENCE & ENGINEERING LABORATORIES
duPont Hospital for Children and the University of Delaware
Vol. 2, No. 3 -- Summer/Fall 1997
This section features plain-language summaries of technical articles to help bring research into better focus, as well as highlight work that concerns consumers directly. This issue we feature, "Consumer Participation & Outcomes Research" by Richard Salcido, MD, Rehab Management, December 1996/January 1997 pp. 48-51.
This article offers a cursory look at some of the issues surrounding consumer participation in research. It outlines some of the benefits and pitfalls of participatory action research (PAR) and how it empowers people with disabilities, with a particular emphasis on outcome studies.
The author starts off by providing 1) numbers of chronically ill people in the U.S. and 2) projections are that by the year 2030 one out of five people will require long term care. The article refers to a University of California at San Francisco study asserting that health care delivery is currently biased towards acute care and neglects to address chronic illness, including disabling conditions.
The article then considers the increasing role of outcomes studies in care provision and how PAR provides a model for consumer empowerment. It lists a number of benefits of PAR; namely an increase in the practical significance of research; increase in the involvement of consumers in research; increase the speed of dissemination and use of results; but most importantly it makes the consumers become stakeholders in the research.
The author then makes the argument that empowering the consumer "destigmatizes the disability so that disability does not become- legitimately or not- a barrier to function."
Empowering individuals, and having them be a part of the research process is undoubtedly desirable for the reasons described above; however, the notion that empowerment leads to a destigmatizing effect has not been shown. For example, the inclusion of a person with a disability might result in improved research outcomes and have secondary sociological benefits for the consumer and the providers/researchers, but it is a stretch to see how a "destigmatized view of disability" results with this particular model.
The article next outlines three potential pitfalls of empowerment. This is where the discussion gets more interesting. The first has to do with the reduction in the power of the provider (engineer, researcher, doctor, etc.) as a result of an increase in power to the consumer. The author rightfully sees the consumer becoming disenchanted with the false promise of empowerment if there is reluctance on the part of the provider to relinquish power. This certainly may be an issue if the makeup of a research team is dictated by some policy, as opposed to conditions of mutual respect.
The second pitfall occurs when a consumer may be over-empowered resulting in an unnecessary burden on the family. Again, the responsibility of the group as a whole is to ascertain beforehand the limits of individual responsibility.
The third unexpected effect of empowerment is the outcomes that are important to providers and to scientist may not be the same as the outcomes that are important to consumers. This is more critical when the study is scientific rather than product-oriented in nature, because of the less defined criteria for success in the former. Nevertheless, this is an important issue and needs to be addressed and agreed upon by the team beforehand.
The article further discusses consideration of cultural, gender, and age issues when viewing outcomes.
The article offers a brief glimpse at some of the important issues surrounding consumer involvement in research. It also includes outcomes research without making a clear connection between the two issues.-Tariq Rahman, Director of Robotics, Appied Science & Engineering Laboratory