The development of a brain injury survivor patient and public involvement group by a brain injury survivor

TL;DR

A brain injury survivor led the development of a PPI program to improve involvement and diversity in brain injury research.

Contribution

A brain injury survivor-led PPI program was developed using video-calling to increase representation and engagement.

Findings

14 PPI sessions were completed, supporting 17 research projects with diverse panel members.

Positive feedback from researchers and specific impacts were reported.

Further work is needed to include marginalized groups like homeless individuals and those with communication impairments.

Abstract

Patient and public involvement (PPI) in research is seen as key to ensuring applicability and impact. Undertaking PPI in people after brain injury has long been seen to be a challenge. In 2020 The NIHR Brain Injury MedTech Cooperative developed a programme with the aim of improving PPI involvement, impact and diversity in this population.

Through a process of iterative development, a PPI programme was created. It built on an existing underutilised database of people after brain injury and their carers who were interested in engaging with PPI and utilised video-calling software. It was led by a Brain injury Survivor acting as Facilitator with admin support from the MedTech Cooperative.

To date 14 PPI sessions were completed supporting a total of 17 projects. The diversity of the panel members was comparable to that of the population at large. However, further work is needed, especially in engaging people experiencing homelessness, people living outside of England and those with communication impairments. Feedback from researchers was positive and specific impacts are stated.

Through the leadership of a facilitator who has an understanding of the lived experience of brain injury a PPI programme has been developed. The use of a video-calling platform enabled a wider representation then a face-to-face group would have and techniques such as shortened sessions and single project presentations ensured engagement and impact.

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