Brain injury survivors guide medical technology development through new patient involvement programme
A programme that connects brain injury survivors with technology developers has led to design changes in at least nine research projects, according to new findings.
The initiative involves one-hour virtual sessions where innovators, including small-medium enterprises and clinicians, present their research plans to selected groups of patients with relevant expertise. More than 20 sessions have been conducted since the programme’s inception.
Researchers at Cambridge University Hospitals NHS Foundation Trust developed the programme to ensure medical technology development aligns with the unmet needs of brain injury survivors. The development and early results are reported in the peer-reviewed open access journal PLOS One.
The programme was created by James Piercy, described as an “expert by experience” of brain injury. Piercy suffered a severe brain injury following a road accident in 2011 and now leads Public and Patient Involvement and Engagement at the HealthTech Research Centre in Brain Injury, which is supported by the National Institute for Health and Care Research.
Participants are recruited from the Register for Healthcare Involvement and Technology Evaluation, a national database established by the centre. Individuals can register and select areas of interest, enabling sessions to benefit from representative groups whilst guiding ongoing work to increase geographic, ethnic and socio-economic diversity amongst members.
““Brain injury affects people of all ages and from every background. It is important that we have a diverse group sharing their experience so that everybody’s voice can be heard,” says Piercy.
“The Involvement of people with lived experience of brain injury is vital in ensuring that new technologies deliver better outcomes for patients from all backgrounds and we look forward to supporting more of these through our groups.”
One beneficiary of the programme is Recallify, an AI-supported personalised memory and learning companion app designed to address cognitive challenges faced by individuals with acquired brain injury.
Dr Sarah Rudebeck, clinical advisor of Recallify, said: “We made notes to inform future design of the app. It helped us focus on other features that need changing and updating, which we had not appreciated before the meeting. James was also excellent at running the group and asked some great questions.”
Dr Alexis Joannides, consultant neurosurgeon and centre co-director, emphasised the value of early feedback in the research process.
“The Involvement programme provides valuable feedback early in the research process. This ensures that the design of health technologies is aligned with patient need, ultimately leading to successful products for adoption into the NHS and beyond,” says Joannides.
The research paper identifies key learning points from the programme, including ensuring measurement of diversity, supporting access through online platforms, maximising impact through preparation of researchers ahead of sessions, and the importance of having a knowledgeable and empathetic facilitator.
The programme represents an approach to medical technology development that prioritises patient perspectives from the earliest stages of research, potentially improving outcomes for brain injury survivors across diverse backgrounds.
