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Before I started my PhD, my understanding of patient and public involvement and engagement (PPIE) was fairly cursory. I knew it involved bringing together a group of patients to talk about your study and that was about it. The uses of PPIE are far more varied and inventive than I previously realised, ranging from assisting study design and dissemination design in qualitative study through to helping with studies which might on the face of things seem incompatible with PPIE, such as quantitative population-based studies. In short, PPIE is a method of helping test, design and communicate research using the minds and voices of the people who are so often relegated to being its subjects. Numbers promoted to words.

My own study is a qualitative exploration of patient and healthcare provider experiences and perspectives of diagnostic delay, in which patients will discuss the subject in focus groups and interviews will be held with healthcare providers. This study should shed light on elements of the diagnostic journey which either facilitate or act as a barrier to diagnosis, hopefully helping uncover issues which can be tackled in healthcare, leading to shorter diagnostic delay and consequent improvements in care and outcomes for patients.

For this study, PPIE is being used to help with the design and language of my topic guides for focus groups and dissemination material. This factors in a number of concerns: I wanted to ensure that 1) my focus groups were not missing important aspects of patient experience, 2) I was communicating with patients so as to be able to converse effectively without needing a jargon-interpreter and 3) I am able to communicate the results outcomes of the study with as wide an interested audience as possible. As a major addendum to point 3), I also want to avoid a common annoyance of PPIE members, which is never finding out the outcomes of the study in which they were involved.

My first PPIE group took place in January and was… enlightening. As it happens, even what I considered to be “lay speak” was still 60-70% jargon (including my study title!). Additionally, I had missed a few important aspects of patient experience, and failed to realise quite how much time is taken when exploring lives. The importance of time management became readily apparent when, at halfway through our allotted time for the PPIE session, we were nowhere near halfway through the material we were supposed to cover.

A surprising and important outcome of the PPIE session: I had oversimplified the concept of diagnostic delay; a result of reading lots of by rote definitions without adequately considering lived reality. I had been thinking of delay as a period with a very definite start and end point: the moment of symptom onset to the moment of diagnosis. I had not previously considered it, but the moment of diagnosis being an end to delay is sometimes slippery. Communication of diagnosis, if handled badly, can lead to a further, more subtle delay in comprehension and the ability of a patient to adhere fully with treatment. Finding this out in advance of my study proper has been invaluable. It opens a further line of questioning which I would not have otherwise considered.

Finally, a happy outcome of PPIE was just how much it enlivened my own approach to the study. The level of enthusiasm and generosity of communication I received from the PPIE group was humbling. Their very personal investment in the subject of study transformed the study for me from a fascinating area of interest into a world of experiences to be shared and, hopefully, improved.