6684 An ethical catch-22: patient and public involvement (PPI) and barriers to hearing the voice of vulnerable children and young people

Objectives Over the last two decades, the importance of involving patients and the public in research and service development has increased. The concept of patient and public involvement (PPI) has been promoted as distinct from qualitative research, and not requiring ethics committee approval. We explore the construct of PPI and the voice of the child, in terms of ethical considerations and practical barriers. Methods We review recent guidance and literature on PPI as applied to marginalised groups, and use a case example involving unaccompanied asylum-seeking children (UASC). Results The usual PPI participant is white, educated, retired and middle-class.¹ ² While many documents recommend improving diversity in PPI,¹ ³ there is no guidance on issues such as use of interpreters, recruiting those not engaged with services and involving children without adult representation. Several papers note the blurred and inconsistent boundaries between research and PPI,³ with definitions varying between documents. PPI done poorly can have unethical results,³ ⁴ and recent work with young people highlights the lack of consistency on need for ethics approval.³ Case example We prepared an ethics application for qualitative research involving UASC focus groups to inform service development. Health Research Authority, NIHR and university guidance made clear that the application would not be considered without prior PPI; the most common suggested example of PPI being focus groups with UASC. We sought advice from the patient engagement team around the ethical dimensions of recruiting and working with such a vulnerable group. We were advised that any PPI undertaken with UASC would be considered research, requiring ethics committee approval. Initially, we were told that this could be a 'light touch' application process. However, the university research ethics department concluded that due to the vulnerability of the patient population, our application would be considered 'high risk', with the associated red tape. This created a circular impasse: we could not apply for ethical approval without PPI; we could not engage in PPI without ethical approval. Consequently, the project remains indefinitely stalled. Conclusion Well-intentioned efforts to enhance PPI in research can have negative consequences, particularly in the context of marginalised groups. Further attention is required to clarify processes and avoid unjustified limitations on important research. Others have pointed out the blurred boundaries and contradictory advice around PPI and qualitative research,⁴ and the ethical dimensions of PPI, but our concern is that the existing model of PPI may unintentionally perpetuate the inequities it is designed to address. References Turk A, Boylan A, et al. A researcher's guide to patient and public involvement, University of Oxford, 2017. Wilson P, Mathie E, et al. How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation. Journal of Health Services Research & Policy.2018. Hagell A. Engaging young people in health services research and service design: a new look at ethical issues. Association for Young People's Health 2022. Doria N, Condran B, et al.Sharpening the focus: differentiating between focus groups for patient engagement vs. qualitative research. Research Involvement and Engagement, 2018.