Blog written by Georgia Taylor MSc Science Communication student.

In this blog we interviewed Moira Lyons, public contributor at the University about her experience of being involved and engaged within the Faculty. 

Tell me about your current PPIE (Patient and Public Involvement and Engagement) experience at the University? 

I’ve been a member of several PPIE groups over the years and currently I’m a member of PRIMER (Primary Care Research in Manchester Engagement Resource) which is based in the centre for primary care and health services research. We’re a group of twelve people who attend meetings either face to face or online, plus a number of corresponding members, who don’t attend meetings but review the research projects to be discussed and provide comments on them in advance of the meeting. 

We meet every six to eight weeks, plus attend additional events, but the main work we do as a group is in meetings, where researchers present their research. This can be at any stage of the research pathway e.g. where researchers have an initial idea or where they’re quite near the end of the project and want to disseminate it. They will come to us, deliver a presentation on their research project, and we will provide feedback. We’ll give opinions and suggestions, and the researcher takes these comments away – it provides them with another perspective. 

I’m also a member of the Patient and Public Advisory Board for Pharmacy which has two committees; one for research, one for teaching. The research committee works on a similar basis to PRIMER – somebody will come and present their research and then receive feedback from the group. The teaching committee is interesting because different members of staff will present on either the existing curriculum or proposed changes and invite discussion of these. 

I’m also a member of the Faculty’s PPIE Forum which plays a vital role in ensuring the prominence, relevance and direction of PPIE within the Faculty.  

Could you tell me about a project you’ve been involved in? 

I have to say this is so hard because there are so many! The most recent one that has really resonated with me, partly because one of my grandchildren has a visual impairment, was for medication safety for the visually impaired.  

Dr Sally Giles initiated this amazing project which has now resulted in the production of a training video for pharmacists. There have also been other significant spin offs, for example, Becci Morris’ planned adaptation of her patient safety guide (which is designed for patients to take with them to hospital and GP appointments, so that they can keep an easily accessible record of their treatment and health), for use by those with a visual impairment.  

Apart from medication safety, this project addresses a very real issue, which is that what you want most for somebody who is visually impaired is for them to have their independence. This is what they want too as they grow up; they want to be able to do all the things that their friends can do and be in charge of their own life.  

What was amazing about this project was that not only did it result in something tangible that will help with safety and make pharmacists aware that they can take precautions and advise people, but that its development involved the people whom it was designed to help. The study itself was very much focused on PPI and involved people who had a visual impairment themselves, and they were so grateful. Grateful is not a strong enough word to describe how they felt at being listened to, for people to ask them what they thought, what their issues were, and what would make life easier for them. It was just amazing!   

Do you feel that PPI has changed since you first started? 

When I first moved into PPI, I think it was already past the baby stage of being a fight against a tick box, it was already established. There’s still a long way to go, but initially, from what I’ve been told by people who were involved before I was, it was sometimes a real battle to get people on board, plus funding wasn’t as readily available. There were so many obstacles to overcome to be able to do anything significant in PPIE.  

I’m inclined to think that the actual PPIE hasn’t changed so much, but rather the perception of PPIE is constantly changing. There has been a shift in how it’s viewed and there is an increase in interest among funders. Now, in most applications, you must include a PPIE section when applying for funding; an awful lot of funders include this as mandatory. Again, this is a work in progress, but I think that’s the main aspect that’s changed. 

So more recently, there’s been a push to include PPIE in research? 

PPIE is becoming more of an accepted part of research. I suppose it’s partly because as time progresses there will be, just through age and people moving on, fewer people who have never heard of PPIE. From what I can gather initially it was a case of… ‘PPI, what’s that? We don’t need to bother with that.’ It was more of a challenge to get people on board, I think, but that was already changing when I started.  

PPIE still has a long way to go, but attitudes within academia are changing or have changed to a degree I would say. It’s expanded and there are more opportunities, there is also more acceptance I think from people to include PPIE. 

Do you find that your current projects differ to your first few projects that you’ve been involved in? 

Every project is different. I think that’s a hard question to answer because there’s no template for a project. I can’t really say that there is a significant difference in the projects I’ve been involved in. However, the more I do, the more varieties I experience. I’ve been involved in all sorts of different projects and different forms of PPIE: workshops, focus groups, normal PPI groups like PRIMER, I’ve even been a dummy patient for medical students to practise examinations on. As the years have gone by, I’ve done more PPIE, but I don’t think the nature of the individual projects has changed vastly. 

Do you have a top tip for somebody new to PPIE? 

I think the best advice I could give anybody who is new to PPIE is not to worry about what you don’t know. That’s hard advice to take because your natural instinct is to feel that ignorance is an issue. Ironically some aspects of PPIE will value a public contributor more for what they don’t know, because they will ask the questions that a researcher may not think to ask because the research environment is so familiar to them already.  

When writing a plain English summary to be read by members of the public or academics who work in a different field the comments of a public contributor can be invaluable. Similarly, when designing research into a specific condition the views of a public contributor who has lived experience of that condition are essential – as in the medication safety study I mentioned already. 

Being a new public contributor can be very confusing. I can remember when I first started, I really didn’t understand why I was there – even though people had tried to explain things to me. It was all so interesting though that I just kept going and over time the purpose of it all became clearer. So maybe the best top tip should be “Just enjoy it”. 

To find out more about PPIE: watch our short film, sign up to the monthly Public Engagement Digest, visit the PPIE blog, follow @FBMH_SR, visit our PPIE Toolkit or contact srbmh@manchester.ac.uk.   

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