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Lookup NU author(s): Alex Bevin-Nicholls, Dr Felicity Shenton, Jenny Earle, Dr Joanne LallyORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© The Author(s) 2024.Background: Working alongside patients and the public to shape and engage with research, Patient and Public Involvement and Engagement (PPIE), facilitates more impactful research outcomes. The UK Standards for Public Involvement provides a framework for conducting PPIE; however, they do not refer directly to ethical conduct. Research ethics involve the moral principles that govern researchers’ actions, and securing ethical approval from a research ethics committee is necessary before starting a study. Nonetheless, in the UK, ethical approval is not needed for PPIE activities. Main text: By its very nature, PPIE requires interaction with patients and public about their lived/living experience of often sensitive and emotional topics. We need to consider ethical principles of PPIE, and potential for harm to those involved. The authors call for ethics guidance to be included in the UK Standards for Public Involvement and discuss this with regards to (a) emotional risk (b) physical risk (c) confidentiality and personal data (d) support versus paternalism (e) marginalisation and (f) building and maintaining healthy relationships. Conclusion: The argument presented here has been informed by the authors’ own experiences in topic areas ranging from transplantation, respiratory disease and health inequalities to women living with domestic abuse, and suggests that although requiring ethical approval for PPIE would be a step too far, and stifle research progress, PPIE needs to be conducted with an ‘ethical anchor’ to facilitate ethical practice and mitigate risk.
Author(s): Suri S, Harrison SL, Bevin-Nicholls A, Shenton F, Atkinson S, Earle J, Williams G, Lally J
Publication type: Note
Publication status: Published
Journal: Research Involvement and Engagement
Year: 2024
Volume: 10
Issue: 1
Online publication date: 31/10/2024
Acceptance date: 13/08/2024
ISSN (electronic): 2056-7529
Publisher: BioMed Central Ltd
URL: https://doi.org/10.1186/s40900-024-00624-9
DOI: 10.1186/s40900-024-00624-9
Data Access Statement: No datasets were generated or analysed during the current study
