We interviewed Nicole McKenzie, a Project Manager and Spinal Cord Injury Research Facilitator at the Foothills Medical Centre in Calgary, Alberta, about the impact and achievements of a project which received support through a Brain Canada Platform Grant. The project called Building the Rick Hansen Alberta Spinal Cord Injury Registry is profiled in Brain Canada’s 2017 Annual Report and is led by Dr. Chester Ho from the University of Calgary.

What did this Brain Canada platform grant enable you to do that you would not otherwise have been able to do?

Prior to receiving the grant, many of us in the field of SCI worked in silos, even though we had common goals. Various stakeholders expressed interest in enhancing the great work that had already been done related to the Rick Hansen Spinal Cord Injury Registry (RHSCIR) and other research initiatives in Alberta. The stakeholders also wanted to understand the SCI population better and work towards ways of creating efficiencies and building sustainability, while filling gaps in our system to ultimately improve people’s lives who are living with an SCI. The grant facilitated the supports needed to turn these “wish list items” into reality. We were able to develop and strengthen our stakeholder teams, locally, provincially and nationally, and include patients, family members, clinicians, researchers, funders, administrators, and community partners. The grant allowed us to collaborate and better understand the unique interests, processes, and gaps across the province. By identifying our areas of need, we are now moving ahead with the development, implementation and evaluation of a model of care for SCI in Alberta to address them.

How will this research help improve the quality of life of Canadians with spinal cord injuries?

Improving the quality of life of persons with spinal cord injuries continues to be the overall goal for our stakeholder team. By collecting data on all SCI patients (those with traumatic and non-traumatic causes), and tracking patients’ long term needs using a comprehensive team approach, we can better understand (and address) those needs over time. Understanding those needs allows us to identify gaps in the system that need to be filled so that the supports, services, and resources that patients need, will be available to them in a timely manner. If people’s needs are being met in the community, they are more likely to have positive outcomes (ex. being active in their community, family, school or place of work) and will be less likely to develop larger issues (ex. pressure ulcers, recurring urinary tract infections, etc.) that can result in a visit to the ER and/or a hospital re-admission. Keeping people healthy and active in their “home” setting, will contribute to an increased quality of life, not only for patients, but hopefully their caregivers too. We are currently working with other provinces who are interested in adopting a similar model, and it is our hope that this exciting work can benefit all Canadians with SCI in future.

Can you summarize the progress in a lay format?

Through the development of a strong relationship with our community partner, Spinal Cord Injury Alberta, we were able to completely re-vamp the process of following SCI patients long term in the province for the registry. This has resulted in more comprehensive follow-up, as well as the ability to use the data collected for multiple purposes (ex. clinical, community and research). Patient concerns are now addressed in real time, by the appropriate support person/group. This is a much more proactive approach than our previous model and will ultimately improve people’s quality of life, as well as save numerous, costly visits to the ER and re-admissions to the hospital. Patients can also now see how their data is being used, which will hopefully contribute to longer retention for their participation in the registry and maintain their connections to the appropriate support systems that are available as their needs change. We are currently working with the Physical Medicine and Rehabilitation teams in Calgary and Edmonton to completely embed the clinical domains of the CFU into standard clinical care. As well, we plan to offer enrollment into the registry for patients at any point along the care continuum. We are working with the RHI and SCI AB teams to implement this in the near future.

We were also able to identify 2 priority areas for SCI research in Alberta, depression and spasticity. As a result, we implemented the collection of the Personal Health Questionnaire (PHQ-9) for all SCI patients on our rehab unit. The PHQ-9 is a depression screening tool, with clear follow-up guidelines for clinicians and community partners, and is now part of our standard of care. We also developed a patient reported outcome tool to better understand spasticity in the SCI population over time. This tool is currently being validated as no other tool of its kind currently exists. A manuscript for the first phase of this validation project is currently underway.

We were also able to define, identify, and collect data on the non-traumatic SCI population. This sub-set of the SCI population (which makes up at least 50% of all SCI cases) was largely not studied and therefore not well understood prior to these projects. One project involved the retrospective data collection of NTSCI patients who came through rehab care in the last 3 years in Alberta. The data collected on this group (~126 patients) is being used to inform a national dataset for the NTSCI population through the RHSCIR initiative. The other project involved a collaboration with a clinical research team in Ontario. Our group developed an algorithm that used administrative data to identify NTSCI patients. We then performed a chart review to determine how accurate the algorithm was. This resulted in 4 manuscripts and the work is ongoing as we work towards refining the algorithm. This could serve to be an international method of defining and identifying NTSCI patients retrospectively.

As we began to look ahead at how we would leverage all of the work to date (including the ongoing data collection for the registry), we realized that what was missing in Alberta is a Model of Care for SCI. Discrepancies in how care is delivered, what services people have access to, and how transitions occur, exist between the two “hub sites” (Calgary and Edmonton), as well as between those hub sites and the “spokes sites” they support (ex. Lethbridge, Medicine Hat, Red Deer, Grand Prairie, St. Paul/Lloydminster and Fort McMurray).

Our initial step was to partner with the Ward of the 21st Century at the University of Calgary to complete a scoping review of other international models of care for SCI. The manuscript for this project is currently being developed.

We also partnered with the Alberta Strategy for Patient Oriented Research (SPOR) to better understand the demographics and health economics of the SCI population in Alberta. A retrospective study has been completed using Alberta Health Services administrative data. The manuscript for this project is also being developed.

Another key partner for our group has been the Campus Alberta Neuroscience SCI Partners Committee. This group identified consistent needs for the SCI population in Alberta and we are working together on our common goal of planning and implementing a model of care for SCI in Alberta. All of the foundational work that the grant supported, will allow us to continue to track patient outcomes, needs, and associated costs over time, to assist us in evaluating and constantly revising our new model of care.

We could not have gotten to this point without the generous support of the BC Platform Support Grant and are truly grateful for the opportunities it has created.