I would say we have vastly insufficient resources to do PPI. Like I say I mean we’ve got, so we’ve got this excellent group, the [involvement group name] group who have contributed I think a lot in terms they consult for lots of projects; they’re there to talk to researchers about their projects; to advise more on kind of the strategy of PPI. They don’t advise just on single projects, they advise about how you do PPI in a project you know. And as I say they are, they struggle to be funded, they don’t have sustained funding which I think is criminal. And I think then there’s that issue I said you don’t have funding kind of before and after a project to kind of do a lead in to something and then to support people coming out of it or to sustain that engagement. I think a lot of the time, I think it’s getting better but I think a lot of the time that even PPI within a project is not adequately funded because it will be kind of the last thing people think about and they’ll do, you know, they’ll do that OK, “Well we’ll put in twenty pound an hour for six people for a couple of meetings,” and you know what if those people are consulting via email; what if they’re doing tele-conferences; what if you’re asking them to go and speak to their friends about research or go to groups or something.

What if they want to go on a training course, you know where does the money for that come from? So I think in my experience PPI is almost always underfunded and yet it will still sometimes be the bit on a grant that hasn’t had the money spent on it, but that’s usually because people have somehow forgotten to do the PPI which happens surprisingly often. And I mean, so to give an example now is so that the project that’s started this all with my PPI collaborator that we do the project on carers and now we really want to take that forward and get a bigger amount of funding for it. And I’m lucky in that at the moment, I’m fully funded on a Fellowship and I have a degree of freedom to sort of put effort into work to build future projects. But apart from that there isn’t anything there to kind of sustain that and so you could potentially have what I think is a great project that was PPI you know instigated and led and now kind of where is the support to go forward with that? And that’s, you know, that’s talking about specific research if you think about this issue of training, you know where’s the funding to deliver training.

So the training that I deliver in the Centre we just do that, you know, there isn’t any kind of external money to support that. So no, I think that, for me, is the biggest gap between the fact that every, pretty much every funding body, now has a statement somewhere about how important patient involvement is and how seriously they take it and that does not translate financially, I think, at all really. And I think the more, I think people who, the PPI partners themselves who have been in PPI for a lot longer, I think they start to see that and I think that sends a dreadful message about how this is just nice words rather than something that is backed up with genuine resources. It’s, you know, money talks at the end of the day I think not adequately resourcing it I think sends a message that we don’t really believe in it and we don’t really want to give it the best chance that it could have really.

And you do, I wonder sometimes if that’s why they give it to kind of the younger researchers because it’s like, “Oh basically you’re a nice young girl aren’t you, you’re inoffensive and you’re very nice to people so you can go and do the PPI,” as if that means you can sit here and run, you know, what is essentially a collaboration event that you can deal with what might be strong personalities or conflicting personalities. You know when I do PPI meetings I’m exhausted after I’ve done them, it’s because you really feel on – you’re trying to communicate, you know you’re trying to bear in mind all the stuff of being respectful of being collaborative; of not leading people a certain way, of trying to respond to people or trying to get people involved who seem sort of reticent to be involved it’s. I think it takes a lot, yeah and that’s yeah [laughs].

You said there that you said you’re a nice young girl [R laughs over I]. Is there a gender issue about who gets to be the PPI co-ordinator or who does PPI?

[Laughs] I wouldn’t say I’ve observed that formally. But in my experience that’s how it tends to get done, you know. I think – yeah you’re essentially kind of, which is insulting really both to I think, to the nice young girl and to the patients where it’s almost like the kind of the PIs saying essentially it’s some kind of coffee morning. Like kind of, “Oh well, you know, you’re nice and you can go and chat to them about their kids or something can’t you?” So I wouldn’t say formally that there’s a gender issue, I think it’s perhaps more of this, it shows a, I think it’s perhaps, in some ways, hints at the lack of value that is being put on it that it’s essentially almost just an exercise in being nice to members of the public for an hour or rather than, “Do you have the skills to sort of properly engage with this?” and also an issue that I often sort of think about is this, you know, if you’re telling this group of people that they’re going to impact the study or that their voices are going to be heard and yet it’s the most junior member of the team who’s hearing and she can’t go back, or he, can’t go back to their PI [principal investigator] and say, “Well you know now we’re going to do this because the PPI group said. So”

I personally would always like to see people who have a bit more responsibility and authority for studies actually going to these meetings because I think that would demonstrate to the group that it’s. I mean, I’ve been at a PPI meeting and you see the people I could overhear the PPI members going, “They’re all very young aren’t they, they’re very young.” And you do kind of feel like well are they going to trust that I’m taking this back. So I think there’s an issue of making sure that people with, you know, people with authority to take decisions about the project, are the people who actually go and consult and collaborate with the PPI members rather than it just being, you know, left to the most junior member of the team.

I think my role, because I facilitate work with the young people is very much I use my skills as a youth worker; try and make all the stuff we do quite engaging; try and make sure that I can build up a good rapport and relationship with young people. Try and make sure that it’s not too boring and not too schooly is what the young people say to me. So there’s a whole different set of skills there to actually working with the researchers. And I think some of the skills I’ve had to kind of think about, when working with the researchers, is being able to understand the research and the jargon and being able to support them in how they can involve young people. So I have done some training with the researchers previously and we when I first started we did a question about their barriers and facilitators, to why they can or cannot involve young people or children in their research and that, for me was a really good starting point. It was within my first six months, I had a very clear idea of what the researchers thought could be the issues and what things they thought could be potentially helpful for them to do this.

So I think some of the skills I’ve kind of developed up as well as being kind of, trying to work within the parameters of those two different stakeholders because sometimes what the young people want and what the researchers want are very different. And to also understand that, with the researchers sometimes they are not in a decision making place. So some of my other work in local authorities we would work with the decision makers directly, whereas with researchers, when they’re going for research funding, they’re not actually making a decision on whether that research is going to be funded and whether it’s a good idea and so, they’re kind of also taking on the young people’s views and it took me a while to kind of build-up that knowledge of research, the real world, the reality of research I think.

Some of the other things I suppose behind the scenes is working with the young people things such as dietary requirements and things which I think people kind of overlook. We do a lot with the young people with kind of ; we make sure we know all their dietary requirements and allergies. Any things in regards to if they’re on any medications and just things. So we have someone whose first aid trained but if we have somebody one of my young people has asthma if they have an asthma attack we’re prepared and we know about it. And also I’ve just thought of something else anyway also we, as part of the risk assessment as well we’ve obviously thought about child protection because we’re working with fourteen to twenty one year olds.

There may be issues with child protection and because we have young people who actually come from different local authorities within Wales, each local authority has a different system. So we’ve got a file which in there has all of the different local authorities our young people come from. So if we have a child protection issue we’ve kind of printed off their web page to find the number we contact that local authority. So there’s a lot of things which I suppose some people wouldn’t really think about which we’ve just have to prepare and make sure we’re prepared for. We also have somebody who is a manager, who is an emergency contact. So off site all the young people fill in a consent form. They can fill it in themselves if they’re over sixteen. If they’re under sixteen we have to get it filled in by a parent or guardian. And we ask everybody, even if you are over sixteen, to put an emergency contact on there so if something happened here we would be able to the process is I would phone our off-site emergency contact which would be one of the managers who then has all those details to phone families to say if there’s a been a fire in the building or.

Well because I come from youth work we do sort of introduction to youth work training and a lot of these kinds of aspects are covered in that. So I came here with the knowledge of that. I do think to myself if I’d come from maybe just a research background there’s some of these things I wouldn’t have instantly thought about. And this is where I think that it’s important when we’re doing research, but also public involvement from sort of academia from research institution, centres, universities, it’s always important to have on-board somebody who is familiar with the public or has worked with our public before. So in our case it is young people and we have myself and the youth worker we’ve done that before. There may be a whole other level of guidance and there may be other issues to think about if you’re working with adults who are under a protection of vulnerable adult’s action and I wouldn’t know anything about that but, it’s important to understand the issues for that public. And I think you can only really do in that either having worked with that public before or asking them.

Actually there’s a debate, this is a thing because I’ve had discussions with people who just, we were, people said Patient and Public Involvement should be straight forward and easy and its common sense and everybody should be able to do it. One I totally agree with that and there has been some criticism that in a way what’s emerged is a PPI profession, of which I am one. So we’ve now got this whole, if you want to be critical of it, this new layer of, layer of bureaucracy called, you know, the PPI industry and a whole layer of PPI people that’s emerged.

And you could say that there’s an attempt to make it more complicated I mean, in some ways than perhaps it needs to be, it should be easy, it should be common sense it should be that everybody’s able to do it and what the PPI folk should be doing should be teaching people that they don’t need PPI people to do it. so this may just represent my own self-interest and justify my existence, but the more I’ve come to do it the more Ive come to the conclusion that it actually isn’t that easy [laugh] or straight forward I’ve seen enough examples of it going wrong to think that maybe that’s right and there’s no good reason to think why an academic should be any good at doing it.

So I think actually there’s really interesting research projects about what makes someone that good facilitator, translator what is it about those people what have they got that allows them to do that. I think it would be really interesting, I’m sure there’s stuff in disciplines like, you know, what makes a good teacher that we might learn from, but this is not about teaching obviously. But I do think there’s a particular skill in being able to span those two worlds, the academic research world and the, and the lay world and to act as some kind of translator between the two and I think there is something there that’s a particular skill. and when I’ve seen it done well you can see that somebody A) who is facilitating very well is attentive to what is happening in the room, so they can see that somebody’s looking a bit unhappy or a bit left out and are able to draw them into the discussion in a way that’s helpful and supportive and doesn’t put them on the spot.

And are also able to listen to what patients and members of the public are saying.

Well, time is the biggest one undoubtedly. The, I suppose the people really again, it comes down to the fact that we’re really lucky to have a position who’s dedicated to that, to that role. And that role, that person [laughs] is there whatever role she needs to do on that day; do you know what I mean? So sometimes in meetings, I mean maybe a meeting that [coordinator’s name] leads herself depending if it’s about the children’s faculty. But sometimes in a meeting she will be very much involved in kind of getting the discussion going or running the whatever kind of tasks or whatever it is we happen to be doing, and other times that person is there just to be there if there’s, well you know, just to be the face that people know, that people come into the room and go, “Oh there’s [coordinator’s name] OK phew.” And, or if there’s a new parent coming that doesn’t come to meetings. So that is a, it’s an invaluable resource really because particularly for those key moments. It kind of, it works alongside the researcher to make sure that everybody’s OK and everybody’s getting what they need out of the meeting and so that is a resource that I don’t suppose that many people around the country have really. What other resources? I don’t know, can’t think of any other resources.

You talked a little bit about money earlier on and the fact that you have some money that you can start PPI without having the grant.

Mm yeah I don’t know where people get the money from to do their PPI because I mean, we’ve just been putting a grant, an RfPB grant, and we were just, it was a phenomenal amount of PPI that we’d done beforehand because we’d also been able to do some of it as part of a different project. But yeah, so that section was very, you know, was very complete, was very full and you could really demonstrate the fact that what you were proposing to do had come out of a lot of PPI work. Now I have no idea how people pay for that if they’re not in a unit that has this kind of rolling capacity or finance or whatever, so I don’t know what they do. Presumably they don’t pay people, I don’t know [laughs]. I don’t know how they do it because yeah, because it’s just so expensive to do properly to have sort of half a dozen people in for a meeting to give them recognition of their time and pay their travel and their childcare and their lunch.

And so universities been quite good games players I have clocked that this is a good thing to do at my old University I think has been very good at trying to broaden the involvement of members of the public across loads of research areas and, you know, there’s been a really big push in the

Absolute respect one of the deputy vice chancellors was taking this on as a major part of his brief and has become a real enthusiast, a real advocate. So the Universities can act in very positive and altruistic ways despite the difficult environment the Government has put them in.

So you work in an environment in a context that’s very supportive of involvement?

Yes I think I do now and I think yes I think we would collectively say that that’s been an interactive thing in that it’s been seen as being something that’s gone quite well for us within our broad area of work. And so that’s the University as seeing that as a positive and that’s helped influence them but I take nothing away from their, their real genuine commitment to this thing, really taken it on board and really wanting to do it so I think that’s very positive.

Just thinking back to sort of the doing PPI, when you first started doing it and, you know sort of your journey through to now, has it been easy to integrate as part of your job?

Well it has relatively been for me, with being you know a trialist and running a clinical trial’s unit, not so bad because it’s actually a vital component of it. Time wise no not necessarily. Getting people together and all the right time is very difficult. We also have a policy where you have to have PPI for certain, trials steering committee for instance, and if you don’t have representation there that committee can go ahead. Because you know the patients have, you know got time themselves, they can’t give up reams of time or to come and service your needs. In the main I would say probably yes. Things like the BRC have been very helpful though. When you get a ground swell of support for these things – it’s funny how things get support and things don’t. It could have been something very different [subject] in genetics, coding or something like that. But at the moment PPI’s considered to be very important, correctly in my opinion, but not in everybody’s opinion. And it’s got a lot of backing and support behind it and things like the biomedical research centre unit, of which we are here, puts funds into that and makes sure it stays quite high on the agenda. When that happens in an academic institution like this, and linked to the hospital, then you’ve probably got more likelihood of it being successful, and it not impeding your day to day work as much as it might do.

But we’ve been very lucky our charitable funding enables us to have a family involvement co-ordinator and that wasn’t a role that existed until we’d been up and running for six or nine months. We became aware that it was going to be a crucial part of making the involvement happen. Up until that time it was one and a half researchers trying to do that and some admin support. And then just through a change in circumstances somebody was able to take on that sort of pastoral care for the family a mixture of the sort of pastoral care, advertising the opportunity and that person wasn’t a full-time academic researcher, but they’d worked around the university sufficiently that they were familiar with what we were trying to achieve. But they didn’t have a, their priority wasn’t to get grants and write papers, they just really had the interpersonal skills to form bonds with the parents and be that sort of bridge between the boffins and the families. And so that’s become a crucial resource for our group, that role.

And are there tasks that compete for your time? So I mean some of the researchers I’ve spoken to have said, you know, as a researcher I’m employed to write papers and get funding proposals and I have to do PPI as well.

Hm mm

Is that sort of the case for you too?

I could argue that but it’s not what I believe. It’s partly, you know, it’s your motivation for doing the research and there probably is a corporate mentality in the University for bringing the money in and publishing in high impact journals. But much of our research in childhood disability research is never going to hit the high impact journals and we’ve been reasonably successful in bringing money in I think because of the way we’ve gone about our involvement. So I kind of think, and now whenever we publish a paper we always put in a paragraph describing how families have been involved and we’ve written two short pieces in non-high impact journals but very much in the childhood disability field of well thought of journals about how we’ve involved families in our research. So we’ve developed somewhat of a reputation for doing it and so I think it’s been a real asset to us. And whilst we’ve learned we’re also now sharing what we’ve learned with the academic community to our benefit rather than to our detriment.

And does it compete with other things that you sort of should be doing?

Not here because, I mean it never has, because it’s never, you know, it’s so what we do. I can imagine that if people work in a slightly different kind of set-up then, and they haven’t thought through the time of doing it and if their prof doesn’t have a great belief in the value of it then you would struggle. But it’s how we do stuff here so it’s kind of. So no, it doesn’t compete with stuff, other stuff you should be doing.

There’s seems to be so much pressure on publication which remains so inaccessible to most people that it’s hard to, it’s kind of hard to see that, that shift to a more. I mean obviously we’re encouraged to publish in open access journals but I think it’s all bound up with the whole time and money aspects of stuff isn’t it which, I don’t know. I guess it will, we’ve come a long way, haven’t we? You know, you can’t submit, and this is obviously where you get your tick boxes coming along but you can’t submit an application for an NIHR or many other researches without a good explanation of how you’re going to involve, and that’s amazing, and that’s an amazing change. It’s taken I don’t know how long. But so I guess yes but not soon, not with like the way we currently value what we do in research which is, almost seems to be completely separate from. We do this PPI, it’s all very nice isn’t it but what really counts is what you publish so, yeah.

You go to the system level because that’s what drives organisations, in part of course they’re driven by the individuals and how they want to be but they’re also driven by what the system is. So the NIHR has been fantastic, I mean the NIHR has been one of the great advances in research for me in this country absolutely fabulous great people involved and they’ve done a fabulous job and they have become powerful and committed advocates for this approach.

And they are the big funders, you know, they spend a billion pounds a year on medical research. And provided they carry on the system level saying you will do this, great people will do it. at the same time I think partly through advocacy from people like Sally Davies and Russell Hamilton they’ve been I think very influential in setting the research excellence framework around impact and if that continues and if the Universities and other organisations see this as being a way of scoring brownie points they’ll carry on doing it. So it’s very important that we set up a system so that the organisations can do this but at the same time we also have to convince the individual researchers.

What do I see for the future of PPI? I mean I think that the NIHR are such a strong driver in the research environment, the medical research environment in the UK that, whatever the NIHR is pushing will happen. I think lots of group/applications are still paying lip service to PPI at the moment. I think that will carry on changing and I am, I mean, as with many areas I’m very hopeful about the junior level of researchers, the junior level of clinical staff who will come through a bit like me where this is normality. So I think it will continue to become more and more normality and unless the NIHR changes dramatically or it doesn’t get sufficient funding in the next spending review then I think that will carry on changing. It’ll take a while for the dinosaurs to get out the top end. And a very interesting point about whether something in the REF [Research Excellence Framework] you know, can be, you know obviously there’s more of a, more of a steer in the REF in terms of towards impact. So whether you can link the added value of PPI to an impact I’m not sure.