Feature article from Spinal Research Institute
Engaging people with lived experience of spinal cord injury in research. Get involved!
Over 20,000 Australians live with a spinal cord injury, the consequences of which are devastating. The resulting paralysis and loss of mobility and sensation are just the tip of the iceberg. As a direct result of a spinal cord injury, people also live with secondary health issues, including bladder and bowel dysfunction, neuropathic pain, reduced respiratory capacity, loss of sexual function and sleep apnea. A spinal cord injury can diminish the quality of life and the capacity for independence, causing social isolation and poor mental health.
The Spinal Research Institute (SRI) aims to improve the health and quality of life of people with spinal cord injury. Guided by the principle that better engagement and meaningful research lead to improved research outcomes, the SRI co-designs programs with researchers and people living with spinal cord injury to achieve real-world impact.
One of the SRI’s programs is its Consumer Engagement Program, which places people with lived experience (‘consumers’) at the forefront of the research process. Traditionally, people with spinal cord injury have only been involved in research as ‘subjects’ of the project or clinical trial. However, there is growing recognition that actively involving people with lived experience (including family members and carers) throughout the research process can benefit research quality and direction, and health outcomes for people with spinal cord injury can be greatly improved.
The SRI’s Consumer Engagement Program supports consumers to work with researchers to co-design and co-deliver research that is relevant to the needs and priorities of the spinal cord injury community.
If you have a spinal cord injury, or you are a family member or carer of someone with a spinal cord injury, and are interested in learning more about research, participating in research, or sharing your knowledge and experience to help develop research, you can join the SRI’s dedicated mailing list.
You can also learn about the SRI’s other programs on the SRI website.
