More often than not, public involvement in research is poorly reported when it comes to the results of studies being written-up in academic papers.
That means we – the public, researchers, clinicians and all others involved in doing research – are missing out on the cumulative knowledge and experience of others on ‘why,’ ‘how’ and ‘to what effect’ public involvement has played a role. People are reinventing the wheel not by choice. But because there is a lack of written-up evidence to learn from, to guide them.
There are many reasons for this. The stubborn resistance of academic journals – with a few notable exceptions such as the British Medical Journal (BMJ) – to taking public involvement seriously is one. They could be doing more to require the authors of research papers to report on public involvement. But editors and editorial boards have proved to be a hard nut to crack. The sort of nut you get at Christmas where no kitchen utensil will suffice so you end up throwing it at the wall or reversing your car over it. Think Ice Age 1,2,3 all rolled into one – and the dinosaur inference is not too far from the truth.
It is also true that authors need better guidance on how they should be describing public involvement in their papers. Hence GRIPP2 (Guidance for Reporting Involvement of Patients and the Public) which was published yesterday in Research Involvement and Engagement. It builds on the original GRIPP checklist published in 2011 and follows a Delphi study with people to reach a consensus on the most important aspects of public involvement that should be reported.
Usefully, the authors – and I should declare an interest as one of the co-authors of the paper – have produced a long-form and short-form of the new GRIPP2 checklist. The long-form is for those studies where public involvement is the primary purpose. The short-form is for those studies where public involvement is a secondary focus. I’ve reproduced the short-form below.
GRIPP2 is going to be a useful tool, but we need academic journals to step up the plate in requiring authors to describe public involvement in their study – even if it is to acknowledge where it hasn’t happened and why – and for funders to set similar requirements on those they fund.
This is not about putting a vice-like gripp of further requirements on researchers, it’s about enabling them to get a better grip on the next rung of the ladder from engagement to involvement.
And with the ongoing consultation on standards in public involvement as well, the bits of the jigsaw that will help them may be finally coming together.
Note: for other reading you may wish to look at this blog by the Co-Editors in Chief of Research Involvement and Engagement, Sophie Staniszewska and Richard Stephens. Sophie is the lead author for GRIPP2.
GRIPP2 short form
Report the aim of PPI in the study
Provide a clear description of the methods used for PPI in the study
3: Study results
Outcomes—Report the results of PPI in the study, including both positive and negative outcomes
4: Discussion and conclusions
Outcomes—Comment on the extent to which PPI influenced the study overall. Describe positive and negative effects
5: Reflections/critical perspective
Comment critically on the study, reflecting on the things that went well and those that did not, so others can learn from this experience
PPI patient and public involvement