By Greg Basky for SHRF
Julie Petrin first met Sarah Donkers when the two were working on their PhDs. They were both participating in an endMS National Research and Training Network event and discovered they shared a passion for improving access to and quality of care for people living with MS.
Donkers, who was further along in her studies, was already a professor at USask by the time Petrin was wrapping up her Doctorate. “I had requested that she act as the external examiner for my defense,” says Petrin, now Manager of Impact and Evaluation with MS Canada. “She did. And then at the end of my defense she said, ‘Great job!”...and then without missing a beat, “Can you come work with me?’” recalls Petrin with a chuckle.
The episode nicely captures Donkers’s drive to enlist individuals and organizations in her mission to improve our understanding of how to optimize functional recovery for people with neurological conditions – especially MS – so that they can continue to do the things they love.
“I always say, yes, everyone wants a cure (for MS),” says Donkers, an assistant professor in the School of Rehabilitation Science at the University of Saskatchewan’s College of Medicine, “but I am focusing on how we can maximize quality of life and independence, and minimize the impact of neurological impairments on individuals living with MS.”
She describes her work as trying to move two trains forward at the same time: deepening our understanding of how to maximize recovery despite a neurological condition, and figuring out how best to get that new knowledge put into clinical practice. Through these parallel efforts, Donkers is fostering an ecosystem involving people living with neurological conditions such as MS, as well as clinicians, researchers, trainees, health system administrators, and government. That community, she says, is key to enhancing the meaningfulness and relevance of her team’s research.
Sarah Donkers, Debby Paquin, Valerie Caron
Image: Debra Marshall
Before taking a USask faculty position, Donkers practised for 10 years as a physical therapist specializing in neurological rehabilitation. She loved working one-on-one with clients, but felt that research would enable her to do more, for more people, by helping grow our understanding of how best to support people living with a progressive neurological condition. She wanted to be part of the growing wave of new research showing the important role that rehabilitation plays in neurorecovery. And Donkers wanted to improve service for Saskatchewan people living with a neurological condition; this province has among the highest rates of MS in the world.
SHRF has been a major supporter of Donkers work over the past five years, providing Sarah and colleagues with a number of grants to advance neurorehabilitation science and practice. An Establishment Grant she received in 2020 – the top-ranked Establishment Grant that year, recognized by the Foundation with an Excellence Award – is enabling Donkers and colleagues to develop a new neurorecovery model of care for the province, linking up a network of like-minded researchers, clinicians, and people living with MS, along with experts from the Saskatchewan Health Authority. The model will include best practices developed by clinicians and emerging new evidence from researchers, and focus on methods to enhance timely access to care.
Linking people living with MS and the clinicians caring for them
It is the connections made possible by the NeuroSask Active and Connected program that turned what was initially intended to be a 10-week pilot started by Donkers and her team during the recent pandemic into the wildly popular, twice-weekly online community that continues to this day – including on holidays such as Canada Day and Christmas. Initially funded by SHRF through a Research Connections: COVID Rapid Response grant, the sessions – delivered over video conferencing – feature a movement class led by a neuro-physiotherapist, and short presentations by expert guest presenters. They regularly attract close to 200 people with MS. Everyone involved – clinicians, researchers, and participants – share and learn from each other.
With another SHRF grant, Donkers and colleagues ran the IPAC-MS (Individualized Physiotherapy and Activity Coaching for Multiple Sclerosis) study in Saskatchewan, enrolling 120 people with MS from across the province. Participants received a year’s worth of individualized programming aimed at increasing their level of physical activity, delivered by physiotherapists who had received special training in neurological diseases. Besides equipping 14 physiotherapists across the province with new knowledge and clinical skills in behavioural coaching, the study also created a community of practice for PTs interested in treating individuals with MS.
Breadth of knowledge, experience enables Donkers to engage diverse stakeholders
Katherine Knox, a physiatrist (doctor with subspecialty training in rehabilitation and physical medicine), has been a co-principal investigator with Donkers on many projects. She says that because most of Sarah’s focus is on MS, it’s easy to forget that she also has expertise in neuro rehabilitation, neuroplasticity, behaviour change – even clinical trials trying to identify best practice for stroke rehab. It’s because she has that breadth of knowledge and experience, says Knox, that Donkers can appeal to so many different stakeholders.
Jake Neufeld, Katherine Knox, Melanie Krause, Sarah Donkers, Valerie Caron, Debby Paquin and Eugene Paquin
Image: Debra Marshall
“She’s able to take what she learns from one area and bring it to another.” And because she’s worked in the private sector, in the public sector, and in the academic world, she understands the language, or the culture, and pressures of working in those different systems. “She’s able to bring us together, which is really, really helpful, because we are so different,” says Knox, past director of the Saskatoon MS Clinic. “Sarah is an example of how catalyst forming it can be when you take somebody who has a breadth of clinical experience and give them the opportunity to apply that experience to research.”
Petrin recalls that when she and Donkers worked together on a MS care pathway for the Saskatchewan Health Authority, Sarah treated it as an “all-in effort.” “She worked with people from government, she had neurologists, she had nurses, she had physiotherapists, occupational therapists, all of them consulting on what this care pathway should look like,” says Petrin. “Anytime she works on anything within the health care system, she’s always pulling together a team that spans the spectrum of stakeholders.”
People with MS at heart of ecosystem
Eugene Paquin and Debby Paquin
Image: Debra Marshall
Debby Paquin and her husband Eugene have been active in the MS community for many years, serving on various boards provincially and nationally. Now retired, Debby – who spent her career working for the Canadian Red Cross and later, Saskatchewan Deaf and Hard of Hearing Services – was diagnosed with relapsing remitting MS in 1999. As a patient advocate, Debby was part of the committee that helped design the IPAC-MS study.
She says Sarah always works to ensure patients are at the centre of the MS ecosystem. Because she’s long taken an active role in advocating for herself and others with MS, Debby is a veteran of MS conferences. She knows tokenism when she sees it.
“Having been to many conferences where the direction has already been decided before it’s even started, I have been so impressed by the grace with which Sarah seeks our input. She’s very very skillful and she has the ability to genuinely listen and consider input to a higher level,” says Paquin.
Connections are where the magic happens
Valerie Caron [Usask School of Rehab]
Image: School of Rehabilitation Science
When you connect individuals from different organizations for research, the benefits extend far beyond the results generated, says Donkers. “It’s the process of bringing all those people together to dedicate the time to have meaningful conversations and build relationships…that is what creates the ecosystem and builds momentum for change.”
But the process itself is anything but linear. “It’s so iterative and messy. Sometimes it can be tension filled, sometimes there’s conflict. But having the safe space and the communication to essentially learn the different ‘languages’ of the different players involved is so beneficial, she says. “The dedicated time to pursue a meaningful topic with multiple stakeholders is where the magic happens.”
It is the connections she’s built and the advances happening as a result of those connections that fuel Donkers. “I am passionate and I am driven, but that would go nowhere or not be as rewarding if I had to do this job without all these other people willing to collaborate with me,” says Donkers. “The community and collaboration is the best part of working in Saskatchewan!”