How do you help someone suffering fatigue after a traumatic brain injury (TBI)?
You start by designing a product or service around them, rather than for them, and you include those with “lived experience” or LE in that process. This is how the Burwood Academy of Independent Living (BAIL) works.
BAIL is a charitable trust sited at Christchurch’s Burwood Hospital. It was founded by Alan Clarke who became interested in the Independent Living movement that emerged during the 1960s and 1970s. People living with disability began to advocate for increased choice and control regarding community services such as peer support, personal assistants, employment, and housing. The aim was to empower these people and prevent dependency.
Gerben DeJong incorporated this process into rehabilitation, arguing that it should be educational rather than medical, that health professionals should support rather than control. This led to Alan Clarke’s vision for BAIL – a research organisation based on the Independent Living paradigm.
“Too many products and services are designed and prototyped without the critical input of People with the lived experience of disability (PLEx). Too many companies identify their user when they’re ready to go to market. BAIL reverses that process,” says Dr Nunnerly.
“We start with co-design and include PLEx in our research phase to comment on, and help with, areas such as new technology and design processes, and development. We build research skills and capacity and validate PLEx in all our work.”
In 2019, the MedTech CoRE funded a project which saw BAIL team up with the University of Otago, Callaghan Innovation, Cerebral Fix and a co-design team of clinicians and Plex to develop a virtual reality (VR) programme together to help combat TBI fatigue.
“Once we had the design, we had to find out whether it was right, whether anything needed changing. We went to the Laura Fergusson Trust for clinical testing because they have both clinicians and patients working to help those with physical or neurological impairments to live more independent lives.
“We’re now finalising the results and if they’re positive then we’ll look for funding for a larger trial before going to market,” says Dr Nunnerly.
Looking forward Dr Nunnerly says they’re focusing more on designing services, such as a peer-support progress for those with spinal injuries and pain from spinal injuries.
Dr Nunnerly says lived experience is gradually gaining a higher profile. “We’re getting more requests for PLEx input because product and service developers are starting to see real value in having this input early on in the process.
“We also have PLEx who are clinicians in their own right and having a foot in both camps, as it were, deliver a unique service – the ability to empathise with both researchers and their populations of interest.”
BAIL offers access to people with impairments such as spinal cord injury (SCI), acquired brain injury (ABI), cerebral palsy (CP) and Arthritis. Several members also have post-graduate qualifications in rehabilitation and good knowledge of research processes, while others bring expertise from business, management, and disability awareness and education.