Patient and public involvement and engagement: Do we need an ‘ethical anchor’?

Abstract

Abstract 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

• Patient and public involvement
• Ethics
• Ethical anchor
• Standards