My journey into public involvement for statistical methodology research

A blog by Professor Laura Gray, Theme Lead for NIHR ARC’s Data2Health theme.

Last year I applied for an NIHR Research Professor Award (spoiler – I didn’t get it!), but this did lead to a whole new programme of research looking at how to do impactful Patient and Public Involvement and Engagement (PPIE) to inform statistical methodology research.

As a statistician, I had seen PPIE for the applied health projects I collaborate on – but this was the first time I was applying for an award as Principal Investigator (PI) which would require ME to undertake PPIE activities – I was very anxious about it!

I’m very lucky that at University of Leicester we have a great infrastructure, mostly funded by the NIHR, for undertaking PPIE. Our PPIE lead here at the NIHR Leicester BRC offered to support me, by setting up meeting with a group of public contributors that had been involved in some other studies.

They had also offered to come along to the meeting to chair and take notes for me. Although this support was amazing, it actually made me more nervous as one of my work colleagues was going to be there to see me make a hash of it if it all went wrong!

I did some research to see if there was any guidance or resources out there that might help me. I was worried about my abilities in getting the PPIE group to understand the methodological nature of my project and I was struggling to see how they might meaningfully input into what I had planned.

I didn’t find much guidance to help me so I put together some infographics to describe my research plans to circulate to the PPIE group before the meeting. I think these did help because it meant that the group knew something about my study before we met.

The day of the meeting came, and actually it went well! The group were really enthusiastic to hear about my work and asked lots of questions to get a better understanding of what I was proposing. They also provided really insightful comments and made me completely rethink the data sets I was planning to use in the work.

This experience got me thinking – if I’m struggling then surely others are too?

I arranged a meeting and invited statistical methodologists with an interest in PPIE from my institution. About 20 researchers attended, many funded by the NIHR. The general feeling was that we all wanted to do a better job at involving patients and the public in our research – but there were a number of barriers which stopped us from doing this.

Number 1 – we were inexperienced and scared! Some of us had attended PPIE meetings, but we had gone to them alone and had found it difficult to engage people with our research – we were scared to try again!

Number 2 – it was not always easy to talk about patient benefit. Statistical methodology research is a step removed from direct patient benefit, it does not always have a clinical application, and can be complex – making it difficult to explain in non-technical language. We were worried about doing PPIE activities which felt tokenistic.

Number 3 – we found it difficult to access PPIE groups, pay for pre-award support, and more generally found that we had to jump over a lot of hoops just to reimburse people for their time. Some of us simply found it too hard so gave up!

We decided we could do better and maybe help others too. Since then, we have:

• Co-produced an animation which describes in an accessible way what statistical methodology research is and why PPIE is important. This is hosted on the NIHR website and freely available for others to use. We are developing a second animation which will give a number of case studies, demonstrating how PPIE has impacted statistical methodology research. https://www.learningforinvolvement.org.uk/content/resource/what-is-statistical-methodology-research-and-why-is-ppie-input-important/
• We have surveyed statistical methodologists to understand their current PPIE practices and attitudes. The results showed a real need for more resources, guidance and training in this area.
• We are developing a glossary of simple definitions of statistical terms.
• We gave a breakout session at the NIHR Statistics Conference in 2023 and have more workshops/talks planned.
• We have started a shadowing scheme to help our researchers feel more confident in undertaking public engagement activities.

My main learning from this journey is that PPIE should be something we do all the time and not just when we have to do it for a grant application – practice is the only thing to help develop skills and confidence. I’m trying to attend public engagement events regularly to practice communicating my research in an accessible way. That way when you do need to do PPIE for a big scary grant application, it won’t be such a big deal.

There’s lots of support out there – make sure you understand what groups already exist and whether there are people employed to lead PPIE within your institution. The NIHR ARCs, BRCs, RSS are a great starting point for this. Even if there isn’t an infrastructure you can get support from, never go to a PPIE meeting alone, take a colleague who can chair or take notes for you, that way you can fully concentrate on what is being said.

I’ve really enjoyed the variety PPIE has brought to my working day. I’ve met a diverse group of people who have formed part of our statistical methodology PPI group and have worked with a creative agency to develop animations – something I’d never done before. It’s nice to have a more creative outlet to my work.

So far there have been no major negatives in getting more involved in public engagement. It does take time – but I think it is worth investing this time. After all, PPIE will become more and more important going forwards and more funders now ask researchers, including statistical methodologists, to do PPIE. So why not give it a go?!

P.S. This has softened the blow from the fellowship rejection – it’s never wasted work!