Researchers based at Cambridge University Hospitals NHS Foundation Trust (CUH) have developed a programme to ensure that the development of medical technology is in line with the unmet needs of brain injury survivors.
The development and early results of the programme are now reported in the peer-reviewed open access journal, PLOS One (opens in a new tab).
The programme was developed by James Piercy, an “expert by experience” of brain injury. James, pictured above, suffered a severe brain injury, following a road accident in 2011 and now leads Public and Patient Involvement and Engagement (PPIE) at the HealthTech Research Centre (HRC) in Brain Injury, which is supported by the National Institute for Health and Care Research (NIHR).
Each of the programme events consists of a one-hour virtual session where innovators, including small-medium enterprises (SMEs) and clinicians, have the opportunity to present their research plans to a selected group of patients with a special interest in the relevant field. Over 20 sessions have been conducted, which have led to changes in the design or research process of at least nine projects.
Dr Sarah Rudebeck, Clinical Advisor of Recallify (opens in a new tab), an AI-supported personalised memory and learning companion app, designed to address cognitive challenges faced by individuals with acquired brain injury, 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 Sarah Rudebeck
Individuals are recruited from the Register for Healthcare Involvement and Technology Evaluation (RHITE), a national database established by the HRC. Individuals can register and select areas of interest. This enables the sessions to benefit from a representative group of individuals and is guiding ongoing work to increase the geographic, ethnic and socio-economic diversity of RHITE members.
Mr Piercy said:
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.
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.
Mr James Piercey
Dr Alexis Joannides, Consultant Neurosurgeon and HRC Co-Director said:
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
Dr Alexis Joannides
The paper concludes:
Key learning from this programme includes ensuring measurement of diversity, supporting access through the use of online platforms, maximising impact through preparation of researchers ahead of the sessions, and a knowledgeable and empathetic facilitator.
For more information about RHITE, and potentially being involved, visit the HRC website here (opens in a new tab), or scan the QR code below:
