The SCI health toolkit app offers evidence-based information and interactivity to help patients manage their physical and mental health.
The NSW government’s Agency for Clinical Innovation has launched a digital toolkit to help people with spinal cord injury self-manage their healthcare.
Developed in partnership with Royal Rehab and the University of Sydney with funding from iCare NSW, the SCI health toolkit app was developed based on an original printed toolkit released in 2020.
The app provides interactive content and resources on six key health concerns for people with spinal cord injury: bladder, bowels, skin, pain, autonomic dysreflexia and mental health.
Designed in collaboration with GPs, expert clinicians and people with spinal cord injury, it also features resources designed to guide primary health professionals and non-specialist clinicians to proactively support self-management in spinal cord injury patients.
Professor James Middleton, Clinical Director of the State Spinal Cord Injury Service at the NSW Agency For Clinical Innovation and a developer of the app, described it as a “one-stop shop” for managing spinal cord injury for both patients and general practitioners.
“At its core, it’s an educational tool to support people to manage their self-care, with a whole lot of simple, very accessible information and a personalised app so the person can develop their own their own care plans and share them with their general practitioner,” Professor Middleton said.
“Spinal cord injury is a very highly specialised area that not many people know much about outside of specialist spinal units, so this tool is also to support community management of what can be quite a complex and daunting condition.”
“One GP said in the panel on Tuesday that when he sees a person with spinal cord injury coming to see him for an appointment, he’s fearful of what he’s going to find, and he said this tool is a great way of providing a level of confidence and understanding and upskilling that can help with shared decision making and a shared management approach.”
According to Professor Middleton, the rigorous collaboration between developers, patients with spinal cord injury and GPs and inclusion of a mental health module established the app as the first of its kind worldwide.
“The really unique thing was the extensive co-design approach that really ensured that the voices of people with spinal cord injury as well their healthcare providers were incorporated into the tool.
“We’ve ended up with something that is absolutely unique globally, so we’re very proud of that.”
The SCI app was developed based on findings from the SCI wellness project, which conducted a report evaluating health outcomes for people with spinal cord injury attending rural clinics in 2015.
The report highlighted the need for a consumer-friendly health maintenance tool offering consistent information and resources supporting self-management for people with spinal cord injury, according to the SCI health maintenance tool website.
While there were no immediate plans to expand the digital SCI health toolkit for other conditions, Professor Middleton said the content of the modules could be used to help manage a range of other conditions.
“From a general practitioner’s point of view, the tool can be very valuable for other conditions, not just neurological conditions. For instance, for the pain management module could be very helpful for an approach to any pain condition, and some of the [tools] in the toolkit like the diaries are not conditions specific.
“We do have plans to potentially add several more components to the current toolkit for people with spinal cord injury, but not at this point for other health conditions or disability groups.”
