Bringing fresh perspectives: Patient and Public Involvement panel members shadowing the writing of an academic paper

We are experimenting with a way of involving patient and public experts in the production of written outputs from our Access to General Practice: Innovation, impact and sustainable change (GP-SUS) project which explores access to GPs. We invited volunteers from our PPI panel to shadow the process of writing up our analysis for eventual journal submission. 

Although we’ve called this ‘shadowing’, it’s really a sneak preview, a bit like the wooden barriers or hoardings on building sites which have little windows so that passers-by can look through and see the building work as it progresses. 

Even better, our windows are interactive, we wanted to hear what it is that our expert group members are seeing, from their perspective.  We are doing this in real time, as the paper is being drafted, and discussing the ideas and arguments as we develop them. 

The standard process for drafting a manuscript, based on the researcher(s) findings, is to write something according to a fairly standard structure, and then the research team reviews/contributes to the paper according to their expertise. Arguments are developed from the analysis, other literature is checked for supporting evidence, or lack of it, or to provide the background and rationale for the methods.  The paper is formatted according to the target journal style and submitted (and often rejected or revised, perhaps several times, before eventual publication). 

This is a somewhat standardised, formulaic process that researchers learn to do. However, in GP-SUS, we have a team which is keen to try out different things. Though the beginning (the research itself) and the end (the published paper) might appear similar to any other research project, what is happening in the middle is being done differently, to provide opportunity for sharing, learning, insight and engagement with our patient and public partners.  

This is a new venture - a behind the scenes shadow-discussion is taking place with two of our panel of patient and public experts. Though they are not analysing the raw research data (because of data governance and also because there is such a lot of data) they are experts in the context in which the findings have been made, and into which a publication will land. They are part of the real world.  We are seeing if they interpret the findings in the same way as the researchers and asking ‘what do the quotes the researchers think are illuminative really mean?’ Different perspectives help reframe arguments and help see another person’s point of view. 

Our two patient and public experts are learning, they are contributing, and, as they are shadowing the drafting of the manuscript, influencing the final product. The manuscript that is developing examines part of the vast set of research findings into the “GP access” (that is, getting an appointment at the GP practice).  

While discussing the research findings, our PPI contributors likened the interactions in a GP practice to a play or theatre show. The stage is the GP practice, and the main actors, those who occupy the stage most of the time, are the receptionists (is this really their role these days?) and a selection of health care professionals. 

Then there are the bit-part actors, people who try to get onto the stage, even if briefly, and “access” appointments at the GP practice - the patients. Sometimes patients have to wait in the wings for a long time, hoping to be called.

Our two experts are helping to reframe our thinking about some of these roles, and they are providing extra insight into the scenes and the plot, helping us to understand how everything from the interactions between people in a GP practice to the building itself can impact a patients’ access to their GP.

Exploring these ideas and discussing with the PPI contributors allowed us to play with ideas about how to present the research findings and it turns out this is fun and creative.  Together we are thinking ‘what will resonate with our audience ‘out there?’’, for example how we can serialise it as a number of digestible and useful short pieces for the public.

This has been a great sharing of perspectives between academics and people with lived experience, opening up new ways of thinking and greater understanding for everyone.