Abstract
BACKGROUND: The Register for Healthcare Technology Involvement and Evaluation is a database which was established to collect names and contact details of people interested in joining patient public involvement (PPI) activity connected to brain injury research. With the establishment of the new HealthTech Research Centre in Brain and Spinal Injury (Brain Injury HRC), the database was refreshed and enhanced to collect demographic data. As well as directing people to appropriate research projects, the database acts as a resource to explore attitudes and opinions on PPI. METHODS: In order to get meaningful use from the renewed registry a service evaluation was conducted to explore public preferences for acknowledgement. A short anonymous online survey was conducted to explore how the Brain Injury HRC and other research groups should acknowledge the involvement of those with lived experience. RESULTS: The survey received 76 responses. Key findings were: 63% (n = 48) expressed preference for payment by cheque or bank transfer. 85% (n = 64) wish to have formal public recognition by researchers. There is a desire to be formally acknowledged in research publications-38% (n = 29) would like to be named authors, 47% (n = 36) would like to be named in a paper. 60.5% (n = 46) would like the impact of their involvement acknowledged. CONCLUSION: This project demonstrates that people contributing to research wish to be acknowledged in publications and other formal contexts. The findings of this survey are situated within the broader context of PPI literature, which highlights the importance of meaningful acknowledgment and ethical remuneration in fostering effective and equitable public involvement in research. Recognising the wishes of public collaborators may improve engagement and retention.. Whilst not a research project with generalisable findings we believe that groups conducting similar PPI work may be interested in applying our results. PATIENT AND PUBLIC CONTRIBUTION: The lead author is a brain injury survivor whose experience, as a contributor and facilitator of Patient Public Involvement and Engagement, gave the impetus for this paper. The paper summarises the thoughts and opinions of a group of people with lived experience of brain injury.