Collaborating to improve rehabilitation
For many years, Patrick Stapleton would experience severe back pain about once a year, typically leaving him unable to move for a couple of days. “Once I could walk again, I’d go to a chiropractor and be okay,” he recalls.
In May 2015, Patrick was in the midst of one of these events and, while sitting upright in a chair, he noticed his forehead felt cold and clammy and his vision rapidly went out of focus. The next thing
he remembers is waking up on the floor with no feeling in his legs.
He acquired a spinal cord injury that day while at home.
“There really is no explanation for what happened to me,” says Patrick. “Many doctors have looked at my case, and after ruling everything out, including stroke or heart attack, their best guess is that I had a muscle seizure and the muscles broke my vertebra.”
Patrick has what is known as an L1 spinal cord injury, and his recovery treatment has been intense. During the first year, he was prescribed multiple medications to manage the pain. He has had spinal decompression surgery, and now has two titanium rods spanning his T11, T12, L1, L2, and L3 vertebrae.
The road to recovery following a spinal cord injury (SCI) or acquired brain injury (ABI) can be long and challenging. Every patient has a unique condition, with an equally unique set of rehabilitation needs. Optimizing treatment for the individual is the goal of Lawson’s Research 2 Practice (R2P) program located at Parkwood Institute, a part of St. Joseph’s Health Care London.
Integrating the patient perspective
The R2P team, led by Lawson Scientist Dr. Dalton Wolfe, is guided by the overarching philosophy of health learning systems through clinical and research integration. Embedded Implementation Science Research is part of a fulsome knowledge translation approach used by this team. It involves interdisciplinary collaboration amongst researchers, clinicians, administrators and persons with lived experiences. The team operationalizes new and existing clinical processes and assesses outcomes to inform improvements to practice.
It is easy to see the benefits of this approach in a rehab setting. “By having research embedded into clinical practice, and working directly with clinicians and patients going through rehab, it really makes the work we are doing relevant,” explains Dr. Wolfe.
As a person living with spinal cord injury, Patrick has experienced the health system from all angles, and knows the rehabilitation program at Parkwood Institute quite well. “I know the acute care setting, I know the rehab setting, and I know the outpatient setting,” he explains.
Including people who live with these conditions is vital in the success of many research projects. Dr. Wolfe stresses that, “Ensuring the patient experience is embedded in our research is integral to this type of model. Patrick adds perspective to the program that you can’t get from clinicians.”
Parkwood Rehabilitation Innovations in Mobility Enhancement (PRIME) aims to create evidence-based treatment protocols by investigating what combinations of physical or occupational therapies are best for what type of patient. Physio and occupational therapies are integral parts of the rehab process for persons with ABI and SCI, and there are many possible therapeutic activities a practitioner might prescribe.
R2P researchers work alongside clinicians to carefully track therapeutic activities and patient progress. Through collaborations with computer scientists and engineers, the R2P team hopes to identify which of these activities might be linked with the best physiotherapy practices, with the ultimate goal of providing the best possible clinical recommendations.
“Ensuring the patient experience is embedded in our research is integral to this type of model. Patrick adds perspective to the program that you can’t get from clinicians.”
- Dr. Dalton Wolfe
Giving back through research
PRIME members meet regularly to share key findings and identify issues. This is where clinicians can reflect and refine their practice. “The feedback loop, between the researchers and clinicians, is essential to the success of our research. By integrating research into the clinical setting, improvements in care are made frequently, and patients are able to benefit from the research immediately,” explains Dr. Wolfe. “Patients experience more effective treatment, faster recovery, and ultimately, better outcomes.”
Today, Patrick’s main symptom is neuropathic pain below his knees, which he describes as intense pins and needles, accompanied by a feeling of “rawness” in different areas. About an hour spent sitting is all he can tolerate. When discomfort sets in, physical movement brings a relieving sensation of pressure to his legs. Twice a week Patrick travels to the Parkwood Fitness Centre for the Functional Electrical Stimulation (FES) cycling program.
FES cycling uses a specialized bike equipped with electrodes which help riders with limited muscle control. The rider has several electrodes positioned in various places on their legs, and an electrical charge is emitted to the leg muscles, stimulating movement. The goal is for the rider to eventually pedal the bike themselves, but when they are unable to generate enough muscle power, the bike provides assistance.
“I started using the FES bike as an inpatient. It has really helped to bring back strength in my right quadriceps, and has improved my mobility,” says Patrick. The FES cycling program stemmed from a more traditional research trial; however, having the bikes in hospital has allowed researchers to quickly translate the results of the trial into a clinical program.
“Everyone involved with PRIME has really taken my feedback to heart,” Patrick praises. “Being involved has also been helpful for me, and I’ve had a really positive experience at Parkwood. This is how I can give back.” Patrick also works with Spinal Cord Injury Ontario, offering peer support for other patients.
The mission of all R2P initiatives is to integrate research and clinical activities to enhance clinical practice and improve patient and health system outcomes. The knowledge gained is leading and informing various fields, and helping to identify priority areas that need focus.
Dr. Wolfe and his team are connecting with rehab centres across the country, and working with new therapists to provide validation and help reinforce the relevance of their research. They also plan to increase their collaborations with data analytics experts, who can assist in the development of more advanced clinical decision support systems using artificial intelligence to identify patterns in patient activities and outcomes.
Sexual Health Practice
Aimed at understanding how the sexual health of patients with spinal cord injuries can be better addressed by the health care team, Sexual Health Practice was implemented in the summer of 2018. Sexual health is important to the overall health and wellbeing of any individual; however, it is often a gap in care.
Parkwood Pacing and Planning Program
A research initiative aimed at improving the lives of those with concussion by helping people manage their daily activities without exacerbating their symptoms. The group has developed the Parkwood Pacing and Planning™ app, making the program available to users on their smartphone.
Ontario SCI Implementation & Evaluation Quality Care Consortium
Based on learnings from the SCI Knowledge Mobilization Network, also led by the R2P team, this Consortium aims to connect Ontario SCI academic health centres to implement best practices. This enables optimal and equitable health care services for all Ontarians, ensuring functional recovery, health and wellbeing in persons with SCI.
A collaborative partnership between the SCI program, SCI Ontario and eHealth, focuses on coordinating care across in-patient, out-patient and community services. It also provides resources for persons with SCI to build their skills to manage their own health. This work is aligned with the Changing Care Initiative aimed at better addressing the needs of family caregivers.