What makes high quality PPIE?

Image: Microsoft library

Now this is an interesting one.

A few days ago I was in a workshop with colleagues from different organisations and we were discussing some collaborative research about PPIE that had been done and how that has informed the policy and guidance of this particular organisation. During the discussion one of the visitors commented that they’d had a conversation with a different researcher from a university in the region about a separate project. The researcher had been told by their supervisor that they should try and find public contributors who had a degree, because that would improve the quality of the PPIE.

The researcher had been told that they should try and find public contributors who had a degree, because that would improve the quality of the PPIE.

I was shocked. Speechless. Then outraged. But it may not be clear why at first glance, so let’s unpack it a bit, because there’s a lot packed into that statement.

First of all, let’s address the issue of quality in PPIE. We should absolutely want good quality PPIE. We should aim and work for good quality in every aspect of research. PPIE is just as valuable as the Research Nurses, Pharmacy Team, Research Facilitators and Participants. If it takes a village to raise a child, it takes a good team to plan, design and deliver research. The size of contributions from each of those team members will vary, but they’re all important and I’m glad that this supervisor recognised that PPIE should be of good quality.

But what does good quality PPIE look like? How do we support or enable that? What are the signs we should look for?

It seems that the supervisor made a mistaken assumption that the more qualifications someone has, the better quality their contribution will be. A degree can be useful in many settings and it indicates that someone can work successfully at a particular academic level. But does PPIE require you to be academically skilled? What kind of skills or qualities are we looking for in a public contributor? We’ll get to that in a minute, but let’s take a step back to the degree part…

If someone has a degree that means that they went to university. If they went to university that means that they must have passed their GCSE and A level exams. This means they had access to the resources necessary to complete those exams to a high enough standard – a stable enough home environment, enough food, clothing, consistent health and means of travel to get to school/college often enough to (a) maintain an attendance level of 97% (85% is the usual college requirement) (b) be taught and able to understand and revise the course content for all the required exams and (c) be able to cope with the pressure and expectations of a high stakes examination process which really doesn’t suit all learning styles.

If they got through their GCSEs and A levels, then they would have needed high enough grades to qualify for a university course. They would have written a personal statement and taken part in an interview, before embarking on a 3 to 4 year course, also with exams, assignments and presentations. They probably would have been required to write a dissertation or present an end of year show, research paper or series of models. And they would have achieved this on top of potentially living more independently for the first time as young adults, whilst managing their own money, paying bills, keeping up a part-time job, making friends, embarking on relationships, taking part in sports or other competitions….

Just think for a moment, of all the learning and experiences crammed into those formative years, between the age of 14 and potentially up to 24. That’s almost a decade of life-shaping moments, taking them step-by-step from adolescence to adulthood. It’s certainly not impossible if you come from a single-parent or care-experienced background to achieve these things, but it is a lot harder. Without access to support and resources of all kinds (emotional, relational, financial, communication and practical skills) it would be incredibly hard, if not impossible to achieve all of that.

The HE Professional website stated that “the entry rate among 18-year-olds reached its second highest ever level in 2022 at 37.5%” but since then numbers have dropped back to around 35% and continue to wobble. That means that around 60% of that population are not going to university. They may be gaining a degree through other means such as an apprenticeship or an online remote course such as the Open University later in life, or they may simply choose not to for various reasons.

So what does this have to do with the quality of PPIE? Well, to put it simply, we want to include a wide and diverse range of PPIE experiences, so that our research study will be relevant and applicable to a wide and diverse range of people. In research jargon this is called ‘generalisable’ – when the data or findings can be applied to a lot of different people. This means that the research is good value for money because it can be applied to lots of people rather than a few.

Someone with a degree will have lots of useful knowledge and experience in some areas, but they won’t have it in other areas. They may not know, for example, what’s it’s like to try and maintain their school attendance, keep up with homework and be able to attend and pass their exams when living with a rare chronic inflammatory bowel disease, which requires various treatments including steroids and specific medication which in turn creates lots of other symptoms and side-effects*. They may not know what it’s like to live with COPD, heart disease, postnatal depression, kidney failure or the aftermath of a stroke. They might…but they might not.

The assumption that was made by the supervisor is that the quality of PPIE is determined by the perceived quality of the person giving it.

Someone with a degree may have a particular set of life skills and experiences, but those won’t represent the experience of the majority of people across the community (at least 60% by those 2022 stats from the HE Professional website), so by definition, the quality of PPIE is in fact limited if you only invite people from a certain social or economic group. Actually, I think good quality PPIE is determined by other things:

understanding what you as a researcher hope to gain from the conversation or working relationship in the first place. It might be that you’ve been told ‘You need to get PPIE’ but take some time to think through what you need and how it might benefit your research. And if you’re not sure how PPIE can benefit your research, ask someone (or read this blog!)

the quality of a meeting, conversation or collaboration is often determined by the preparation beforehand:
- have you thought about the purpose and hoped-for outcomes of the meeting (see point above)?
- have you got an agenda?
- who will you invite and why? What can they bring to the meeting/collaboration? Look again at your list: who’s missing? What are you going to do about that?
- how will you follow-up on the actions and ideas suggested?
- how will you communicate with people and keep them up to date?

What do your public contributors/collaborators get out of this? They’re not just there for your benefit (!) They’re real people, with lives and interests outside of research. How are you going to enable them to feel valued and respected? They may not want a PPIE fee (although you should definitely budget for this regardless), but there are other ways of making people feel valued:
- take time to understand them as people – what’s has motivated them to get involved?
- make sure they know why they’re here and what you want them to help you with, and invite them to suggest what they could offer which you might not have considered?
- agree a time, venue and format of the meeting/workshop which takes account of their needs.
- Hospitality is key – refreshments, rest breaks, an accessible venue and toilets go a long way to making people feel that thought has gone into the meeting. I’d even go as far as fresh flowers sometimes or a table decoration…you can show people that they’re worth the effort of your time without using words.

Understand that whilst some of these people may not have an academic degree, they do have a wealth of experience in other areas and most importantly this is information, insight and experience which you don’t have (unless you are a lived-experience researcher, researching things which have impacted you directly…and even then, other people will know things you don’t.)

Now, I mentioned quality and skills earlier and I think the skills required are actually on the part of the PPIE Lead or the researcher, in terms of how the meeting is led, the atmosphere and environment of the meeting, how the discussion is facilitated and how those relationships are built and maintained afterwards. Public contributors don’t necessarily need training to be able to talk about their life experience, but they might be really interested to understand more about how research works and the processes involved so that they can make an informed contribution. If they’re sharing about a particularly traumatic or emotional experience, they might need help with how to frame that, how to explain it to others and accept questions and they may also need a de-brief with you after the meeting to help them process any uncomfortable or challenging feelings, or in fact to be encouraged and congratulated on being brave and sharing their experience.

So when you next embark on a research project and start thinking about public involvement, hopefully these points will help you to think about what ‘high quality PPIE’ really looks like…

*This is based on someone I know.