Background: Patient Public Involvement and Engagement (PPIE) was an integral part of a UK study on palliative care. PPIE members were involved in the design of the study, ethics processes, selecting measures, co-production workshops, data interpretation and dissemination. 

 Aims: (i) to critically report an evaluation of the PPIE input, which was embedded within a larger research project, and (ii) share key learning on how to increase the consumer voice in developing the palliative care evidence base. 

 Methods: This inductive qualitative study collected one-to-one interviews with research team members, including the academics/clinicians and ‘consumers’ - that is people who contributed by drawing on their lived experience of palliative care. Analysis adopted a thematic approach, to generate new understandings and insights into PPIE. 

A researcher independent of the main study conducted the interviews and analysis to aid rigour.

Results: Interviewees welcomed the opportunity for PPIE to engage in a range of tasks and roles (such as developing analytic coding frame, appointing the academic researcher and dissemination through verse). PPIE engagement positively impacted the team dynamic. Positionality of people spanning both lived experience of palliative care and being academic researchers requires greater examination, to understand how these insider perspectives contributed to strengthening the research and its impact. Participants also identified areas that would benefit from greater criticality with the PPIE literature and reflexivity.

Conclusions: Research being informed by people who have expertise through personal experience rightly continues to gain recognition, space and funding. Reflexivity and documenting ‘lessons learned’ underpin two core areas for progressing and improving the value and role of PPIE. This research moves the evidence base and discussion forward, by highlighting the nuanced perspectives of academics/clinicians and PPIE research team members.