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.
Keywords: Ethical anchor; Ethics; Patient and public involvement; Standards.
Patient and Public Involvement and Engagement (PPIE) is key to achieving more meaningful and effective research results. While the UK Standards for Public Involvement offer valuable direction for PPIE activities, they currently lack specific guidance on ethical conduct. Research ethics are fundamental moral principles that researchers follow to ensure the safety and well-being of individuals involved in their studies. These principles are overseen by research ethics committees (REC). In the UK, obtaining REC approval is not mandatory for PPIE activities. However, given that PPIE often involves sensitive and emotional discussions with patients and the public, ethical considerations are paramount. While REC oversight could ensure ethical practices, it might also introduce delays, consume resources, and deter researchers from engaging with the public. Instead, the authors propose enhancing the UK Standards for Public Involvement by incorporating ethics guidance tailored to emotional and physical risks, confidentiality, maintaining a balance between support and control, preventing marginalisation, and building and maintaining healthy relationships.
© 2024. The Author(s).