Rick Hansen SCI Registry provides a baseline for the collection of critical data in Alberta
When you hear about spinal cord injury (SCI), you often hear about the traumatic causes – for example, those sustained from serious falls or car crashes. However, of the 86,000 Canadians living with a spinal cord injury, about half of those individuals sustain their injury from "non-traumatic" causes, such as infections, tumours, neurodegenerative or congenital diseases.
"There is a huge sub-set of the SCI population that we don't yet understand well."
Little is known about how NTSCI affects individuals in the long-term; however Alberta researchers, with support from RHI and other organizations are hoping to change that with the development of RHSCIR-Alberta.
"Non-traumatic spinal cord injury (NTSCI) is hard to define because there can be so many different etiologies or causes," explains Nicole McKenzie, a Project Manager and Spinal Cord Injury Research Facilitator at the Foothills Medical Centre in Calgary, Alberta. "Classifying these individuals can be difficult because they may not be seen by a specialist or if they do, be seen by multiple specialists (which makes it difficult to gather information systematically), may have a mild case that only becomes severe enough to require surgery or be identified years after they begin to experience symptoms." Because of this, the NTSCI population has not been historically studied as often as the traumatic population. The result? "There is a huge subset of the SCI population that we don't yet understand well."
The Rick Hansen SCI Registry connection
In 2014, a diverse group of stakeholders in Alberta took the lead in addressing this gap through the Rick Hansen SCI Registry (RHSCIR). Located in acute hospital and rehabilitation facilities specializing in SCI care across the country, RHSCIR tracks the experiences and outcomes of people with traumatic SCI during their journey from acute care to rehabilitation and into the community in order to improve research and clinical practice. Participants are enrolled during their initial hospital stay and are then followed after one, two, and then every five years, with the goal of collecting information about their post-injury experiences. With over 6,700 participants enrolled in RHSCIR to date, it is one of the most comprehensive databases on traumatic SCI in the world. Expanding the dataset to include NTSCI would not only make the data more robust, but it would enable researchers and clinicians to better understand NTSCI and how to develop more effective treatments.
With financial support from numerous organizations including the Rick Hansen Institute, Brain Canada, Alberta Paraplegic Foundation, University of Calgary Hotchkiss Brain Institute and the University of Alberta Neuroscience & Mental Health Institute, RHSCIR-Alberta embarked on an ambitious initiative to collect data on NTSCI and re-envision a method of community follow-up that could improve upon the current model of capturing individuals' experiences after sustaining their injuries.
"This is an extremely exciting project as we are working with provincial, multidisciplinary stakeholders in spinal cord injury to establish and implement a new model of care [in Alberta] that aims to provide equitable and standardized care, regardless of geographical location."
"This is an extremely exciting project as we are working with provincial, multidisciplinary stakeholders in spinal cord injury to establish and implement a new model of care [in Alberta] that aims to provide equitable and standardized care, regardless of geographical location," says Dr. Chester Ho, Professor at the University of Alberta and Principal Investigator of the RHSCIR-Alberta initiative. "For the model of care work, we need to have a robust, data platform for longitudinal outcomes evaluation," and RHSCIR-Alberta in turn, would provide an important platform in this new model of care.
In Alberta, RHSCIR has sites in Calgary (Foothills Medical Center) and Edmonton (Royal Alexandra Hospital, University of Alberta Hospital and Glenrose Rehabilitation Hospital) and the data collection, protocols and linkages to a national network of SCI experts are well-established. By building off of the national registry, RHSCIR-Alberta collects data that contributes towards national SCI research, while promoting collaboration among Alberta SCI researchers, health care administrators, clinicians and community groups. The work in Alberta will also inform the collection of longitudinal, community data and NTSCI data for the rest of Canada.
It is this spirit of collaboration that has garnered support from organizations such as Campus Alberta Neuroscience (CAN). With an aim to elevate the impact of neuroscience and mental health research, education and translation, CAN promotes and propels strategic collaborations with diverse stakeholders across Alberta. It is these collaborations that resulted in the creation of the Alberta Spinal Cord Injury Partner Committee; a research and translation team with a vested interest in supporting a new model of care that will provide better outcomes for Albertans with spinal cord injuries. RHSCIR-Alberta relies on the expertise of these important partnerships.
"We're working to advance and connect spinal cord injury research, translation, community services and clinical care to improve the lifelong experience of people with SCI," says Dr. Grant McIntyre, Executive Director of Campus Alberta Neuroscience. "The Rick Hansen Spinal Cord Injury Registry is a key element in our goal of turning research evidence into healthcare solutions for Canadians with SCI."
Identifying non-traumatic spinal cord injuries
In order to learn more about individuals with NTSCI, the RHSCIR-Alberta team began to examine existing health information. They looked at the past 10 years of health records through the Alberta Health Services data repositories. An algorithm to utilize administrative data to identify cases of NTSCI was developed in conjunction with the University of Toronto, Rick Hansen Institute and Alberta Health Services Data Analytics teams. This algorithm then generated a list of patients. Charts were reviewed by the team to confirm (or deny) whether the patients had, in fact, sustained an NTSCI. This process validated the algorithm and also refined it (you can read about the research here).
The team also looked at health records of individuals with NTSCI who went through rehabilitation in Calgary or Edmonton in the last three years. These retrospective projects do not capture everyone who has an NTSCI in Alberta, however, notes Nicole who is also RHSCIR-Alberta's Project Manager, it is the "first large-scale project of its kind, internationally, to try to develop an algorithm to identify this population using administrative health data."
A few members of the RHSCIR-AB team present their poster at the 2017 National SCI Conference in Niagara Falls, ON on the new community follow-up model (from left: Karen Smith, University of Alberta; Nicole McKenzie University of Calgary; Zahra Bhatia, Spinal Cord Injury Alberta; Magda Mouneimne, University of Calgary)
A new approach to community follow-up
The RHSCIR-Alberta team was also interested in developing and implementing a new model for the long-term follow-up of individuals in RHSCIR by creating a "person-centered approach."
Prior to RHSCIR-Alberta, a member of the research team would conduct follow-up interviews with participants after enrollment in RHSCIR. However, the attrition rate was high as it was often challenging to maintain contact with participants as they settled back into their lives post-injury and it was difficult for individuals to see how their data was being used. Researchers were also realizing individuals' needs were changing over time with respect to work, family and ageing, but they were not in a position to provide support if individuals identified concerns during follow-up interviews. These issues were also identified among other RHSCIR sites across the country.
The RHSCIR-Alberta team includes members from Spinal Cord Injury Alberta (SCI Alberta), a peer-support and advocacy organization, and they quickly realized that many of the questions being asked in the community follow-up interviews were also being asked by the SCI Alberta team to the clients they support. So, the team modified the questionnaire as well as the data collection process for the follow-up interviews and as a result, are better able to address individuals' concerns in real time, incorporate specific research interests and improve participant retention. Today, a staff member from SCI Alberta (usually a social worker) conducts interviews with participants. If any concerns are raised during the interviews, SCI Alberta staff team are able to directly handle the concerns or connect patients with the appropriate clinical supports.
Partnering with SCI Alberta was a natural fit as it enabled participants to talk to an organization that they had already developed a relationship within the community and that was familiar with the challenges they face. It also allowed the SCI Alberta staff to develop assessment skills and create stronger relationships between researchers, clinicians and community advocates. SCI-Alberta staff underwent training in good clinical practices, privacy, data platform usage and processes for following up on identified concerns. Ultimately, according to Teren Clarke, SCI Alberta's Executive Director, "it would also enhance the number of unique individuals that data is gathered from so that research and services can be strengthened and policies can be better informed."
Participating in these interviews was especially enlightening, said Teren. "We were inspired by the depth of the stories people tell about life with SCI, particularly their openness when speaking about the challenges related to ageing."
"The SCI Alberta team is an essential part of our data collection that is used for research and clinical purposes," added Dr. Ho. "This partnership is groundbreaking and is establishing a very new collaborative model with mutual respect and trust for our healthcare system."
These RHSCIR-Alberta initiatives have provided invaluable insights at a national level that will have a far-reaching impact on the type of services and access to care available for individuals with SCI. As part of RHI's national strategy to optimize care for Canadians with SCI, going forward, RHSCIR sites across Canada will soon begin to collect data on the NTSCI population and are being encouraged to engage with local community organizations to develop partnerships for community follow-up.