Consumer Participatory Research

Numerous epidemiological studies have shown that today, people with spinal cord injury (SCI) are living longer than in previous decades. A growing body of literature indicates that people living with SCI often experience deteriorating physical and medical complications commonly associated with aging at a disproportionately higher rate and earlier than is observed in the general population.

Respiratory complications, for example, are more prevalent among persons with SCI and are increasingly the leading cause of death beyond the first year post-injury (McKinley et al., 1999, and DeVivo et al., 1999). Cardiovascular disease is also more prevalent in people with SCI than in the general population, and is the leading cause of death in persons past 30 years post-SCI (Whiteneck et al., 1992). Similarly, other conditions such as the incidence of lower-limb long-bone fractures, genito-urinary complications and autonomic dysreflexia (episodes of high blood pressure that can cause severe headaches, strokes, abnormal heart rhythms and even death) are also more prevalent among persons with SCI (McKinley et al., 1999).

While the long-term health complications experienced by people with SCI are becoming better understood, research into what can be done to prevent these physical/medical conditions is limited. And perhaps most neglected is the collective experience and wisdom that consumers can share.

Ontario Neurotrauma Foundation (ONF) believes that a consumer participatory approach to neurotrauma research (where people with disabilities actively participate in deciding which research topics are studied and how people with disabilities are involved) is vital to understanding the full impact of SCI.

"Because people with SCI experience severe and immediate physical changes at the time of injury, rehabilitation tends to focus more on helping consumers adapt to their present and imminent needs and less on reducing long-term physical and medical complications of SCI," says Kent Bassett-Spiers, ONF Executive Director. "Facilitating research that builds a legitimate and constructive partnership between researchers and consumers to collectively address research questions is the key to generating knowledge that can be applied to improving the quality of life with SCI."

As part of its strategic funding program, ONF released a request for proposals to Ontario neurotrauma stakeholders on the topic of long-term impact of SCI and the role of rehabilitation in educating consumers to reduce future complications. Following an expert review of submissions, conducted by a team of neurotrauma researchers, physicians, SCI consumers and rehabilitation professionals, ONF recently awarded $83,000 (over one year) to a research team based in London, Ontario, to address this important question.

Led by Dr. Patrick Potter, St. Joseph’s Health Care London, and Dr. Jeffrey Jutai, University of Western Ontario, the research team, including persons living with SCI, will examine:

- consumers’ experience and ways of adapting to various physical complications at least five years post-injury;

- rehabilitation professionals’ knowledge and experience regarding long-term complications of SCI; and

- differences in the degree of preventative education provided to individuals depending on the severity of their injury and the length of time in rehabilitation or length of time post-injury.

"Our objective," says Dr. Potter, " is to provide recommendations that can be applied in both urban and rural areas for optimizing the rehabilitation process to reduce long-term complications for consumers following SCI."

(For more information on the Ontario Neurotrauma Foundation’s effort to reduce the incidence, prevalence and impact of neurotrauma, please call (416) 422-2228 or visit www.onf.org.)

FAST FACTS

Ontario Neurotrauma Foundation (ONF)

CORE BUSINESS

To create new and applied knowledge through strategic investment in the neurotrauma field and to build the research capacity of the neurotrauma field in Ontario.

HISTORY

Established in 1998 as a non-governmental, non-profit organization, ONF provides strategic investment for Ontario-based spinal cord and traumatic brain injury research. ONF is governed by a volunteer board of directors representing diverse neurotrauma stakeholders across Ontario, including persons living with SCI and TBI, researchers, caregivers and academics. ONF is financially supported by the Ontario Ministry of Health and Long-Term Care with a commitment of $5-million annually for five years.

FUNDING PROGRAM

ONF’s funding program, including innovative collaboration and partnerships, provides strategic funding for research across the entire continuum of need in neurotrauma. To date, ONF has invested more than $17-million (not including matched and leveraged funding) to nearly 200 recipients across Ontario in the areas of injury prevention, rehabilitation and applied clinical and biomedical investigation.