A review of acknowledgement and payment preferences of contributors on a register of patient public involvement in brain injury research
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 n...
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| Language: | English |
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BMC
2025-08-01
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| Series: | Research Involvement and Engagement |
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| Online Access: | https://doi.org/10.1186/s40900-025-00772-6 |
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| author | James Piercy Colin Hamilton |
| author_facet | James Piercy Colin Hamilton |
| author_sort | James Piercy |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-1551822a93044ab98f564be471f880e9 |
| institution | Kabale University |
| issn | 2056-7529 |
| language | English |
| publishDate | 2025-08-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj-art-1551822a93044ab98f564be471f880e92025-08-24T11:56:51ZengBMCResearch Involvement and Engagement2056-75292025-08-011111810.1186/s40900-025-00772-6A review of acknowledgement and payment preferences of contributors on a register of patient public involvement in brain injury researchJames Piercy0Colin Hamilton1NIHR HealthtechResearch Centre Brain Injury, Cambridge University Hospitals NHS Foundation Trust, UKDepartment of Physiotherapy, Cambridge University HospitalsAbstract 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.https://doi.org/10.1186/s40900-025-00772-6PPIEvaluationAcknowledgementPreferencesReimbursement |
| spellingShingle | James Piercy Colin Hamilton A review of acknowledgement and payment preferences of contributors on a register of patient public involvement in brain injury research Research Involvement and Engagement PPI Evaluation Acknowledgement Preferences Reimbursement |
| title | A review of acknowledgement and payment preferences of contributors on a register of patient public involvement in brain injury research |
| title_full | A review of acknowledgement and payment preferences of contributors on a register of patient public involvement in brain injury research |
| title_fullStr | A review of acknowledgement and payment preferences of contributors on a register of patient public involvement in brain injury research |
| title_full_unstemmed | A review of acknowledgement and payment preferences of contributors on a register of patient public involvement in brain injury research |
| title_short | A review of acknowledgement and payment preferences of contributors on a register of patient public involvement in brain injury research |
| title_sort | review of acknowledgement and payment preferences of contributors on a register of patient public involvement in brain injury research |
| topic | PPI Evaluation Acknowledgement Preferences Reimbursement |
| url | https://doi.org/10.1186/s40900-025-00772-6 |
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