Evidence-based exercise guidelines for people with spinal cord injuries available in 13 languages online at SCIUni
Improved health and sense of community for PACE participants
Knowledge Exchange Strategy
Guidelines & Toolkits; Interpersonal interaction; New media
Educate individuals to increase physical activity and quality of life
Share healthy activity information and knowledge with general public & health sector
- Supported research subjects in their exercise programs and their learning
- Presented findings at public lectures to community groups
- Published evidence-based exercise guidelines online
- Engage a range of publics using social media
Keys to making it work
- Trained student volunteers who share knowledge with participants
- Time to build community relationships
- Focus on doing research of value to partners and broader stakeholders
Bitly (link shortener to save characters on Twitter): https://bitly.com/
Twitplus (allows for longer/chain tweets to convey more information): https://www.twitplus.co/
Physical Activity Guidelines for Adults with Spinal Cord Injury http://sciactioncanada.ca/
Ontario Brain Institute Physical Activity and Alzheimers Disease Toolkit http://www.braininstitute.ca/physical-activity-and-alzheimers-disease-toolkit
"The single most beneficial thing someone can do for their general health and mobility as they age is to be physically active. Physical activity trumps any drug for imparting health and its ‘side effect’ profile includes lower incidences of disability, slowed cognitive decline, and protection against the development of frailty.”
McMaster’s Physical Activity Centre of Excellence (PACE) intends to encourage and enable physical activity and healthy behaviours across the life course and in populations with compromised mobility or health. PACE’s state-of-the-art exercise facility enables researchers to investigate the impact of exercise and health programs on a range of populations, including those with osteoarthritis, diabetes, Alzheimer’s and dementia, multiple sclerosis, spinal cord injury.
While exercise is generally understood to be good for our health, scientists and physicians often do not know, with any specificity, what type or dose of exercise will produce the most optimal health outcomes. The question of exercise type and dosage becomes more critical as we age, and is crucially important for people dealing with chronic health or disability. PACE researchers, including Dr. Jennifer Heisz and Dr. Monica Maly, examine exercise type and dose for addressing specific health issues. Dr. Heisz’s PACE research focuses on understanding the long-term benefits of exercise on measures of cognitive health. Her research will help to determine the optimal dose and type of exercise that mitigates cognitive decline in healthy older adults and individuals with mild cognitive impairment. Dr. Monica Maly’s research goal is to develop physical activity guidelines for adults with the most common forms of arthritis that are associated with aging. Her PACE research, called the MOBILE study, will determine the best amount, type and intensity of exercise for women who have knee osteoarthritis.
Many PACE research programs share the explicit knowledge exchange goal to change the behaviours of their research participants. Scientists hope that participating in PACE research will help participants make evidence-based exercise programs part of their regular weekly routine. Director Dr. Stuart Phillips observes that while the health risks of sedentary living are increasingly well-known, many Canadians do not exercise enough. He compares this lag between knowledge and action to the research on smoking—which took 30 years to affect people’s behaviour.
Both Maly and Heisz hope that participating in a research-focused exercise program is just a first-step toward a sustained change in behaviour.
“We also want to instill in these individuals [the idea that] that exercise is good. We hope that after working with them for 3 months, they will have confidence to continue on their own. ”
However, continuing and maintaining an exercise program is perhaps the biggest challenge. A research program normally lasts for just three months, and after that it is usually up to the individual to decide whether or not, or to what degree, to maintain the prescribed exercise routine. To help people maintain the positive change they’ve made, participants can opt to purchase PACE memberships. Then, staff work with members to maintain that commitment.
“Making behaviour changes is difficult for anyone. Signing up isn’t necessarily the hardest part, it’s the maintenance…we do follow up calls to check in when people haven’t been here for a while, to encourage them to come back. So not just getting them in here, but the maintenance is a challenge.”
Phillips and McQuarrie recall exemplary case of research participants who became long-term users of the facility. One such participant is one of the original founders of MacSeniors, established more than twenty years ago. He is now 98 years old and still active. Others have similarly adhered to prescribed programs for twenty to twenty-five years. These long-term PACE users have told staff that their continued involvement with PACE has helped them cut down on prescription medication, improved their quality of life and their interactions with their grandchildren.
At the heart of participants’ continued engagement are the interpersonal relationships that develop between participants, students, and staff. Dr. Phillips explains that older adults who have never exercised may feel particularly challenged by embarking on an exercise program. At PACE these adults can exercise with their peers—people of the same age and often dealing with the same health conditions. Also, research participants, as well as PACE members more generally, are supported by trained student volunteers.
It’s really amazing because we have a specific research question but the impact of being part of research program, interacting with young Research Assistants, it gives [participants] so much confidence and joy.… They don’t see themselves as research subjects, much more like we’re in this health partnership together.
Relationships are also fundamental to broader knowledge exchange goals and engaging community groups as partners. This requires long-term investment in building relationships with external partners. Dr. Maly noted that having existing relationships with a potential partner can be a large advantage to beginning the knowledge exchange process.
Relationships developed over time, and the point of access was a social one.
The time that it takes to build these relationships can’t be underestimated, particularly when working with a potentially vulnerable population, such as people who may be suffering with dementia.
Heisz explains that it took her over a year to develop a relationship with one community group. She worked first to establish trust with the teachers who were part of that community group. Once the teachers felt that she could be trusted, and that the exercise program was one their clients could handle, the teachers began promoting Heisz and her research program to their clients. Through the teachers, Heisz was able to more quickly gain the trust of the clients.
"The biggest challenge is time. It takes more time to do research that matters to the community.”
For both Heisz and Maly, it makes sense to put the time into community-engaged research because it benefits them, as researchers.
"They’re teaching me about the questions I’m asking"
"There is an ivory tower, and we sometimes miss the point and working with patients really brings you back to the point."
Engaging broader publics
PACE researchers and staff observe that it can be challenging to move knowledge beyond the circle of those directly involved in PACE. By using existing networks and tools of partner organizations, such as mailing lists, poster spaces, and websites, PACE researchers have connected with wider audiences.
Dr. Phillips is sharing his research with oncologists, encouraging them to refer their patients to PACE research and/or exercise programs. Maly is disseminating findings through the Arthritis Society. Heisz has worked with the Brain Institute to develop a consensus statement that outlines the benefits of exercise for people with Alzheimer’s and an associated toolkit. The toolkit is posted on the Ontario Brain Institute website and is also distributed through PACE. Dr. Kathleen Martin Ginis’s evidence-based exercise guidelines for people with spinal cord injury, which Dr. Phillips considers one of PACE’s greatest successes in knowledge exchange, has been available online through SCI-Action since 2013.
Sometimes, it’s just about getting off campus. Maly recruited participants through yoga studios, and conducts the study at studios, with teachers of studios. Heisz regularly offers public lectures.
"We did manage to reach quite a few people just by being in the community, rather than being on campus. "
"People are bombarded. They don’t know what to trust, and having the researcher tell them what the evidence is saying--that gives them more confidence and they can ask their specific questions"
This direct engagement—the one-on-one with a researcher—can be a highly valuable knowledge exchange tool.