Patient and public involvement and engagement: Do we need an ‘ethical anchor’? 2024 Suri et al

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.

Plain English Summary
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.

Open access, https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-024-00624-9

 

I think that ME/CFS research needs its own ethics charter and experts full-stop.

Currently the likelihood you've a few people round a table who are academics or HCPs who know as much as the misinformation 'people get a bit tired' and assuming people at all levels of severity, lengths of time and from all walks of life have the same things to input. I think there are few illnesses where this could be less true.

So at best we all ended up battered by pet patients sought out who are paternalist to other patients who couldn't sit in a room for 4hrs like that makes them more able to speak on an illness where you don't know what it is even at the level they have until they've done about 8yrs of it and seen some cycles and ups and downs to different circumstnaces.

Nevermind whether they are the types who want to consider those stuck in horrific housing or doing jobs that are manual labour or with logn commutes or hours and little support around them vs their own circumstance as actually part of the norm (ie they are unusually fortunate if not) and that the issues like noise and not being able to go part time or it being pointless doing short days if your commute is 2hrs

I mean it's very kind of them and well-intended that they think they can still sit there and do it so why don't they, but it's undermining and leaving the issue that the people who are qualified are being barred from participating by the set-up. The wrong things are getting focused on.

And yes then there are huge ethics if you think its OK to throw someone severe into a conversation with people who will dominate the pace and order and use various agressive techniques from their motivational interviewing type 'toolkit' to show displeasure at certain things and 'train others' not to speak by making it unwelcome or too much effort for the illness at severe to allow.

And others who are less ill will do this too to some extent if some researcher has errantly suggested it must be a 'compromise' and not a document that represents each severity appropriately but with those spectrums absolutely connected given 'too much' will easily move people to more severe. So you just use group psychology to force people to do it to each other by putting time pressures on and inappropriate outcomes required then throwing different levels of vulnerability in a cage together to battle it out. What goes on that piece of paper at the end is an achievement if it isn't only the work of the only one who can get to the end of that session still being able to write.