I don’t think you’re ever trying to be representative really. I think you’re doing, I think if you can offer the opportunity to as many people in the group that you are targeting as is possible, is humanly possible, which in itself can be challenging because using parents as an example, you tend to get very proactive parents that go to groups that are in places where you might access them. So even providing that opportunity to parents is already going down the selective route. But I don’t think you could ever, we don’t argue whether you even need or need to try to be representative. What you’re trying to do is give people a voice and as many people as voice as you can and if they don’t for many valid – and trying to take away – You can identify lots of barriers for people and if you can provide for those as best you can. So childcare for example is an immediate barrier isn’t it? A lot of people are at work so we have tried to offer evening meetings, you know. But you can only do what you can do and I certainly think, you know, one person’s opinion to throw into the mixing pot of everybody around the table is better than no person’s view. Obviously it would be better if you can have more involvement than that but.

We do go to parent meetings and we do distribute our information around but we probably don’t, you know, we have never, we don’t go, “Right come on we’re going to go and target these really low income families who are all single parents and living in this particular area of [place name] where we know this to be an issue,” yeah we don’t do that, yeah [laughs]. And there probably isn’t really a good reason why not other than it’s convenient. We have a ready-made sample and, you know, the easy argument is we’re not trying to be representative, we’re not trying, but it’s a convenient argument I would say. And you can make all kinds of comments about who does and doesn’t have the capacity to come to meetings or get involved but we don’t actively try.

I would say we, in terms of, so, in terms of socio-economic backgrounds I would say we have a reasonable mix.

We have absolutely no mix in terms of ethnic diversity at all – that’s not true, that’s not true. We have one or two families that come to meetings that are not white British and probably a few more that come to the Family Fun Day, not massive, it’s not massive. Obviously we check the disability box [laughs]. But yeah you can tell, you can tell by the fact that I’m squirming a bit and I think really we should maybe think about this a bit more.

And how does it feel that you might have to let go of the control?

Well personally as a complete and utter control freak yeah it’s difficult. It is difficult but it makes perfect sense and I think you can’t argue with the basic logic behind the idea of its right to let people have a say in research about them. And it’s going to be better research it’s going to be more relevant and people will take part in it, you know. So although we’re kind of maybe not used to thinking along the lines of letting other people design research for us, you know, you can’t argue with the sense of doing it and the rightness of doing it. But I think we do, we don’t just kind of throw it up in the air and it’s a free for all because we do try to be quite clear with the families that we work with and the difficulties of getting research funded and how long it takes to, not only to do research, but to even get money to do research. So we do, from the start, try to, again it’s that expression manage expectations. But, be up front and kind of transparent with people about like the likelihood of their idea being even taken forward because it either doesn’t fit with our skill set here which is, you know, because there are a multitude of issues that are really important to the families and they are really important but we don’t have the skills or the capacity to even start thinking about going down that route. So we try to be really upfront about that and people, you know, there is stuff that is going to be more likely to get funded than others and there are certain ways of twisting the objectives to make them more appealing and it might not be quite what you had in mind but it’s more likely to do something, you know.

So we just try to be really clear on that front and, so it’s not just, I mean obviously everybody in the group we try to make it as equal as possible. So as researchers we still have our input to the ideas and the shape of the research and takes and, I think yeah but that, we try to kind of have guidance around the tangential conversations that go on around the table. But it can be, you know, it can be difficult because obviously you’re, when you’re talking about people’s experiences on why these ideas are so important to them, these are really emotive topics for them and they’re talking about their children and you sometimes have to say, “I know that’s important to you but it’s not going anywhere, or it’s not research, it’s a service issue and we know the services are shit and I know that that’s not.” And that’s one of the difficulties I think is not being able to do everything that people want.

And do you think that PPI is going to become more embedded in academia in the future?

I think yeah. I don’t see how it could not with, you know, as I say, it will take time for it to be done well but the changes that are made already make it impossible for it not to become more embedded in research, the requirements that are in place, if you are someone who views it only as fulfilling requirement, it still has to be grudgingly impacting your work and the way that you go about it. And those requirements will become progressively more embedded, you know, more what is required to show it to demonstrate PPI will become more involved than simply saying, “I asked a couple of parents and that was it – once.”

How would you, what would you say to the people who just do the tick box, or who are reluctant or sceptical reluctant to do PPI or sceptical?

Yeah, yeah. I can understand the sceptical, less understandable than reluctant. I can understand reluctant from a practical point of view its hard work [laughs] and time consuming. Sceptical – I just think, you know, there’s, it’s hard to argue in my mind that it’s not going to have a positive benefit to do some level of Even if you’ve got a consultation as opposed to, you know, team working. I think it’s hard to argue that there won’t be a positive influence on the way you design your research which I would have thought that most researchers somewhere inside must see that as a good thing. It’s the hard and fast evidence for impact, it obviously is something that it’s going to grow the idea of getting everybody on-board with the idea of PPI is step one wasn’t it? Now there’s, oh, oh, we think it’s a good idea we’d better think how we’re going to demonstrate that to the rest of the people, and it’s just an evolving.

I think, I guess people will be happier if they can see what they consider to be valid evidence of impact’ and that is another question that you were leading to earlier, what actually will constitute for people, valid evidence that there has been some impact positive or negative on research. Answers on a postcard. But yeah, I think that’s the problem though, it’s reluctance, is understandable and, as I said, you know, there are potentially some people who will argue that their field of work doesn’t always make sense and in some cases they may have a valid argument. But [laughs] yeah.

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 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.

And you said research partner there is that your sort of preferred or accepted terminology here?

We don’t, oh god, I don’t think we actually have a preferred terminology. I will, research partner to me is a terminology. I refer to parents as colleagues if I’m introducing them at a meeting with an external person. I think it’s, to my mind particularly if I’m introducing people in a, to an external person, I want to make that clear. I don’t know how important it actually is to parents [laughs] when we talk to them because I think it, yeah, to me it’s important that if they’re having a conversation with us, they’re having a conversation with two colleagues, not researcher and parent in some kind of weird way as we presented in our comedy skit about the way that people may perceive that partnership. So I don’t, yeah, we don’t have a sort of fixed terminology that I’m aware of [laughs]. But I don’t mind research partner. You kind of, I mean there was a conversation about it at the PPI conference wasn’t there about what terminology people are comfortable with. I think, I suspect it’s probably just another one of those of which there are hundreds of things that we tie ourselves up in knots about getting right that people really don’t mind too much as long as you’re respectful. But yeah it will do.

What do you think the things are that we tie ourselves up in knots about other than terminology?

We tend to worry a lot about whether we are sending too many emails, whether we, whether we’re asking too much of people, whether we, yeah expect too much of them. And I think there’s a tendency to be a bit almost paternalistic in a way as if we need to protect them, and there are probably pros and cons to that kind of attitude, and I’ve done it myself I noticed the other week that one of the people that I’ve worked quite closely with, I said to her, “I see you’re in again on Thursday, are you taking on too much?” And she actually said, “Yes I think you’re right; I’m glad you said that, I’m going to cancel that meeting.” So, you know, there are pros and cons that these are grown-ups and I wouldn’t necessarily say to somebody else in the research team are you taking on too much? Although I might if I thought they were, do, you know. So it’s kind of, yeah it’s, we do worry quite a lot about, and all these things around words and quite often people, people’s lives are actually way too busy to worry about that and they’ll just ignore our emails or they’ll tell us if we’re asking too much of them. So I think it’s that, it’s one thing to protect I think which is probably not a bad thing but can be a bit overkill sometimes.

I think the expertise one is an interesting one but you can see it from both sides obviously. It’s a really, there are some arguments that are just focusing on people’s complete naïve experiences. I think the way I’ve started to think about it is that actually the expertise that people gain from being part of PPI is part of what we should be giving them. You know, it should be, it’s kind of a one sided relationship, well it’s not, I mean that’s the point that parents, parents make to us that they do get something out of it; it’s not just about contributing to research, they get something out of being part of it and I think that’s an important part of the whole expertise argument that it, if people want to be involved in a systematic review and you give them some training on that then they get something out of that which is useful to them in terms of confidence, skills, you know, all manner of things. So from a, from a personal development point of view I think, well, you know, it’s brilliant, it’s fantastic. If somebody wants to develop their knowledge base and, as a result, can participate more in some of the, some of the less accessible areas of research, then I think that’s fantastic. I, again, do see the point that sometimes I know for a fact some of our parents know a whole lot more about certain elements of conditions and, and not just from experience, from the fact they attend a lot of conferences.

So I think it really depends on what your purpose is, you know, what are you trying to do? I’m trying to involve some parents of disabled children. This person is a parent of a disabled child, he has all of that experience and the fact that she may be, she may have learnt how to, how to do a bit of thematic analysis so that she can be involved more doesn’t take away from that experience any more than, you know, me being a runner takes away from, you know, something else. It just, yeah, so I don’t think we have the right to say to people, “We want you to come and be involved in our research but we don’t you to know anything about it, that’s our domain, no.” So yeah there you go, that’s pretty much it [laughs]. That’s pretty much my views on it.

So in terms of skills she has to do that role; it’s about being, it’s about putting people at ease, it’s about being personable, knowledgeable, communicator really and being able to tell people about what we do and how they might get involved in that if it’s of interest to them. And I mean that’s, those are the skills that I think are probably essentially about being explaining to people what you’re trying to do and how they can get involved in taking that forward. But it’s quite… I guess most people don’t have access to a co-ordinator, a family involvement co-ordinator that does that. But I guess the skills are pretty much the same plain speaking that would be, is a key skill I think and just being. Putting people at ease is a big, is a really big thing because and for a lot of the parents that we meet and I don’t know if it’s the same for other groups but they’ve had a real knock in their confidence and their lives have changed a lot since they’ve had their children. And they may have given up work and there’s all sorts of, you know, confidence issues that are going on with them and I think what’s, it’s really important to be able to have them value their input as much as, you know, they add to the research. But, you know, you quite often get comments like, “But I’m just a parent,” and. So it’s the person’s skills to be able to make people feel valued once they’re here and able to contribute and which we just try to do by being friendly and just letting people say their piece you know and it just, being normal people [laughs] which is not a skill all researchers and academics have I have to say so maybe that’s it – that’s why we need an involvement co-ordinator.

It’s an interesting question because we’ve never had any, to my knowledge. I hope I’m not – [laughs] No I haven’t had any training to do PPI. I suppose you could quite readily put together a course that would be based around communication in meetings and, you know, that kind of, that kind of thing but I think most. I think there is growing kind of work around the methodology but that’s the not the actual doing of it. I think if, maybe some training to help understand people, to help people understand the value of involvement rather than just a kind of tick box exercise. But that’s not, that’s still not the actual doing of it. I think there’s a kind of. It’s, you know, I think training around why it’s important and different ways of going about it could work and it depends whether you’re preaching to the converted or not. You could see well, I would imagine people who would go on those kind of courses are already doing it but I might be wrong [laughs], I might be wrong about that. Certainly I think when we’ve asked our parents; I mean we try and, you know, when we’ve asked them what they get out of it, they like coming because they’re, the fact that they feel valued and they feel like they’re contributing and they feel like they’re making a difference so if you were going to try and train people to do it, it would be around those kind of skills and maybe different, I guess raising awareness of the different ways that people can influence research without scaring academics who might find the whole prospect terrifying I suppose, because it is terrifying [laughs].

And over the years when you’ve sort of been doing PPI, have you been, is it a sort of a trial and error thing that you learned to do it that way?

For me it has been, yeah. I think for an example, like a, an example would be when we’ve experimented with doing, with writing plain language summaries which we produce for our research projects and our papers. And we went through several iterations of trying to have meetings around that and working with different groups of parents to figure out what is the best, what is actually working, you know, and we’d be, the first meeting that we had we kind of. I think everyone was a bit shell-shocked at the end of it because unfortunately we started with quite a tricky one; we started with a systematic review [laughs] that we’d produced and it’s again it goes back to your earlier question about what is PPI? And we had gone in with let’s try and write this from scratch as a collaborative; have a meeting, we’ll talk about it and of course you get into a room and you’ve got a systematic review in front of you and you’ve got a group of people around the table and everybody goes, “Well it’s probably all important really isn’t it?” So yeah, and through, I think, a couple of other project meetings after, so from that what we did achieve was just sort of have a template about.

So we wanted a little box with key messages and people may not read any more than that, you know, we wanted to just have big bold questions what do we do? Who did it? Who said it was OK? You know, like a very much, similar to an information sheet for a study in a way, you know. And then we took that forward to the next time we needed to do a systematic review and realised that actually sometimes it’s OK for the researcher to write a first draft. Somebody’s got to write the first draft and if one of the parents in that room said, “I’ll write the first draft,” then that would be great. And if they don’t that’s OK [laughs], it’s kind of about opportunity to do it than forcing the issue really. Yeah so I think that was one where we, yeah it has been trial and error and particularly involving the systematic reviews I think are quite, and not just in the plain language aspect of it because we’ve… I had a group of parents who were involved in producing that in the whole kind of conduct of that systematic review and that’s not something that’s always done. And again that’s lessons learned from that one we’ve used again in another, another systematic review that has been done on a slightly more, possibly slightly easier topic to do about here. So yeah, I think it is and I think some topics are again more accessible than others for that as well. So it is a learning curve for us isn’t it and I think what’s great about the PPI conference and INVOLVE and everything like that, is that you can all learn from everybody else’s learnings on the job’ so yeah.

But I don’t think that there is only one fixed thing that is good PPI and I think there are perfectly valid situations where any level of asking of consultation or is better than nothing. So what we try to do here for what you might call full PPI is to have the whole research kind of, it’s embedded in the research we do so from the generation of the idea all the way through the design. But, yeah I don’t think there’s any one fixed in my mind, there’s no one fixed thing that constitutes good what is PPI. I think what’s really important is that whatever you’re offering people know what you’re offering and what influence they can have. And you know I would have no qualms about emailing our family faculty and saying, Can you read this, it’s written already, does it make sense? And that’s kind of like a really, a fairly kind of old school, if you want to read this information leaflet and tell me if you can read it kind of approach, and that’s fine because if they know that that’s the only influence they’re going to have, to my mind then that’s OK but it’s about, it’s about the horrible phrase, ‘managing expectations. But about what the people are, you’re asking people to put in and what influence they’re going to have and what they’re going to get out of it I think if you’re kind of clear on that with everyone. That’s what it means.