As I was saying I have seen people describe themselves as professional patients, you know, professional public involvement and it doesn’t mean that they were useless but that just that you didn’t want only people like that who have become completely involved. And that can both happen on very formal national committee structures because you get people who bring, you know, considerable expertise from the public but also have great expertise and they’re valuable. It can also happen with some patient organisations where people effectively become professional patient organisation people. and they have a role but what you need is a whole range of different sorts of people, so sometimes what you want is you just want a way of talking to someone who has never had any involvement whereas other times you want someone, you know say for instance we’ve done a lot of work on these very rare conditions called Lysosomal Storage Disorders and the patient organisations are fabulous they know more about Lysosomal Storage Disorders than I do, much, much more and they’re being really, really helpful. But that’s not the only kind of public involvement you want. I mean the one thing I would say is that, slightly controversially, perhaps is that sometimes there’s this debate about representativeness and to be honest I think it’s a red herring, you know, because you’re not trying to run a democratic process of representativeness what you’re trying to do is to try and make sense of research questions that may be helpful in clinical decision making. And for me it’s not about trying to run a democracy in which everybody has a vote I’m trying to work out what’s going to be most helpful in making sense of something so you do research that is then useful and you can get a bit a precious about anything yes.

So what I’m saying to the people who are involved is I think we all recognise that this isn’t the centre of your lives and that actually this is a mark of real altruism that you’ve become involved. I hope that you find that if you do get involved that as well as giving something to society you actually may find that you enjoy it as well and there may be some real positive experiences for you. That’s what I hope will happen and that actually if this is a real partnership in which people are involved in the whole process it’s a very good fun thing to do. I really enjoy doing research and I think you guys will as well.

For the Universities it’s a bit more complicated obviously Universities are involved in playing games again they should in my view start with an altruistic view of the world and to some extent they do but again, you know, the environment that Universities operate in this country has changed dramatically in the last few years our current Government have dramatically decreased the real resources available through a sort to Universities have effectively semi privatised them and are making them play what I think are stupid games. In that context obviously if the Universities, if you spend money on involving people you’re not spending it on other things, the only saving grace as is so often the case in society is there are countervailing forces which I think happen without the Government realising it, thank God. And one of the countervailing forces has been the way in which the research excellence framework, the way we have Universities assist has been structured this time round. Which is for reasons I think are slightly accidental, there has been a great discussion of impact and now I think that that was driven from the centre as being all of that economic impact, the ghastly nonsense about why you shouldn’t study classics because it doesn’t make better widgets but none the less the discourse about impact that has evolved outside of the Government’s control has been about real impact. And there has been both, so both of that as I say the kind of research we do that involves people kind of manifestly has more impact in my view. But at the same time one of the metrics that been used is involving people. 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 board 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. I mean I think the same is true of the NHS I mean there is, I mean there are pockets of resistance and we wouldn’t deny that both in universities, but also in the NHS to be involved in the public. And again the environment that the Government has put the NHS into, this mad competitive stuff makes it more difficult but none the less I think there is sufficient there’s sufficient kind of memory of altruism within the organisations that we can still get by I think whether that would last another Tory Government I have no idea.

So the thing about this stuff is that it is very open and very open ended and sometimes the people who become involved are not easy to work with and in not acknowledging that is stupid, it seems to me. And sometimes it’s because they, you know, you may get people who have particular obsessions and their obsessions may be to do with what you see some of those people come with ideas about the causes of things which probably don’t chime with what the rest of us think. And may want to just talk about that all the time yes and that’s really difficult and you have to kind of allow for those really difficult conversations. So that’s kind of the worst end personally because it’s really difficult when somebody is in your mind completely off beat, but that shaves gradually into the most difficult bit where all of us have to learn a lot. Which is that if you’re really going to have people involved you have to understand that you don’t know it, because when you first start doing this stuff, if I’m honest, what basically happens is you go in and you think well I know the result I want how do I make sure I get it okay, that’s what you start off doing. And then you learn it doesn’t work like that, it can work like that but then it’s, you’re wasting your time. So actually you have to learn that you may come up with results which weren’t quite what you thought and sometimes you may end up doing things that you actually wish you didn’t do it that way.

Yeah okay. Well I think there are both reasonable and unreasonable reasons for scepticism, so we’ll deal with the unreasonable ones, it’s about power. You know, I’ve said you know you have to make compromises and it isn’t easy, for those of us who, you know, yeah the Professor and yeah the consultant and all the rest of it, you kind of get used to telling people what to do, which is a terrible thing but it’s true, it’s what happens in your life. And so public involvement that is more than tokenistic involves you kind of giving up that power and that’s the unreasonable objection. You know, and it goes along with what the bloody hell they would know and so on, all that stuff that. The reasonable, but wrong, objections for me are firstly that it’s really difficult and really expensive and that’s right because if you don’t do it properly, which takes time and resources it’s a waste of time. So people say that it’s just adding another layer the difficulty of getting the right kind of involvement, it is difficult and requires a kind of structural investment as well as a kind of direct investment in one project, you’ve got to have the structures around you to make sense of it and the people who can do it right. You need to develop skills, you know, if you’re a person who doesn’t have those kind of skills it’s kind of hard work and you’ve got to develop them or employ somebody else who can help you. And then we talk about the fact that there are problems and you can be, you know, you can run into very, very I mean often we talk about the difficulty of making sure people feel able to be involved, sometimes you can get very powerful individuals involved, personally powerful who can you know, be very damaging if they are getting things deeply wrong. So yeah all these things are real risks and difficulties, me I think if the game is worth the candle so I would try to deal with those things but it doesn’t mean they’re not real. So I think those are the two camps and but to be frank I think quite often the people expressing the reasonable reasons are often driven by the unreasonable so it’s very often that actually they don’t want to do this because they used to know what the bloody hell they want to do and do, and they make excuses.

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.

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.

So in other words it’s no good at getting everything right after getting the clinicians to tell people to do the right thing because a lot of the time they aren’t going to do it and we would say that’s partly because we can’t give them the information they need in a way that makes sense to them to let them make the right decisions. Plus of course quite often the decision the clinicians think they should make aren’t right for them but that’s another story. What I’ll use as an example, we are really interested in children with cerebral palsy, one of the things that’s really makes life very difficult is if you have cerebral palsy affecting your legs it can increase the likelihood that your hips will dislocate and if your hips dislocate it’s very difficult to walk and it’s one of the major problems we have. So there’s been a big movement that if you diagnose cerebral palsy early in kids to try to get them to be, to put them to kind of sleep systems that hold the legs in a position that make it less likely we think that the hips will dislocate, that’s the theory, huge enthusiasm amongst many professionals.

All the research, early research all the early discussion was focused on the question of hip dislocation, well of course the point is who is going to put the kid into the sleep system, it’s their parents. So then if you talk to the families as we’ve done they say yes okay we want to know because of course we care about hip dislocation but, you know, if you’re going to strap a child into something every night what do you actually want to know about. Well the truth is you want to know about pain because you don’t want to hurt your child and you want to know about sleep, does it stop them sleeping.

And unless you do the research in a way that captures those things how on earth can you have a sensible discussion with the families. And so that’s again a long way of saying the simple thing and the simple thing is that we said when we bid for the CLAHRC that we would involve all these three groups in everything we did from the beginning in deciding what the questions were and shaping the way the questions were done and then in helping us decide what the implications were and how we would help people change. So we’ve been committed from the beginning the big crunch for us was that so when we made this bid we set aside about 10% of the grant for public engagement.

I mean the answer is yeah I would say that, it makes you feel good about what you do. I mean I’m, I’ve been one of those fortunate people I come to work with a desire to come to work because it’s fun and I enjoy it but like many people I like to feel that what I do is useful and the more engagement I’ve had with members of the public the more A) the more fun it is but also more useful I feel the stuff we do is. Because I believe that we’re actually doing research that may make a difference one way or another and you know, you can’t feel better than that.

And indeed I have to say that I spoke to you earlier about having had some of the members of our family faculty from, you know, [research unit] spontaneously talking at a, a meeting with trustees from the charity which moved me to tears because of the positive things that they said. And that makes you feel good about your life, yeah.

It’s long been said that one of the reasons there’s such a paucity of good research in childhood disability is that it’s really difficult to do research with these families. And I mean to some extent that’s true and the reason that’s true is because if you’ve got a kid with multiple problems your life is incredibly busy, just count the number of professionals you deal with. So asking people to do more is really asking a hell of a lot of them. So it is difficult but we found to our pleasure that actually if we spend quite a bit of time talking to people before we started just doing the thing we thought we should do they kind of said to you well if you do it that way I wouldn’t have taken part but if you do it that way I might. And that was, was a bit obvious in retrospect but it hadn’t been the thing that we did much of before. So as we started doing that what we saw was we managed to, we found it easier to recruit people into trials, studies we found it easier to keep their interest and involvement and, you know, that’s been a kind of overwhelming message and if I can brag a bit about not my personal research but the people in my group we are currently involved in doing a study, not in childhood disability but in trying to help prevent obesity and other unhelpful behaviours in kids, nine and ten year olds. And the group worked really hard with a bunch of parents, this is a trial run in schools, a bunch of parents a bunch of kids teachers so on and they spent really, I mean so the trial took years in the gestation and a number of pilot phases. Just done the 18 month follow up on this very large cohort of children and I’ve managed to get over 95% follow-up and over 95% of the children to wear accelerometers for a week. Which is just, it just doesn’t happen in most trials and I think that’s entirely because this group have really, really spent the whole time working with people from the design stage and how they do it now and at every stage and it just, it transforms the pragmatics of doing studies. As well as most of all makes you feel good about it.

We were asked by [name] the charity, they said the single commonest question they were asked on their parent helpline was whether cranial osteopathy was an effective intervention for children with cerebral palsy and that’s because large number s of families are paying money to have cranial osteopathy. And there’s lots of anecdotal evidence and they asked us to look at the question so we did a systematic review which essentially revealed no data at all and a confused picture. So we agreed with the charity that we would do a trial and the charity were fantastic because they let us spend six months working with some families to design the trial.

And I will be honest I wanted a placebo control and the families said, No, ain’t going to do it. Do a placebo control and we won’t take part, people won’t want to take part. And so we had a wait list control not a placebo control and I was very sorry about that but they were right in that we were able to recruit more children to the trial than we thought there were eligible children to recruit. And we hardly lost anybody and the trial worked really well and it all went fantastically. But it wasn’t the trial I would have liked to have done and, you know, you have to learn to accept those compromises, yeah. But it’s not easy.

So in that were the people who were involved had an impact on the design.

Yeah.

Is there a danger of effecting the robustness and rigor of research by involving people?

Yes absolutely. But it goes back to you’ve got to say what’s the point, so I probably could have done a placebo controlled trial it would have taken me three times as long, I would have had a sample who were highly unrepresentative of families with kids with cerebral palsy and the applicability of the results would probably have been less. So I would have had the more internal validity in the trial but less meaning. So I’m prepared any day to trade things for meaning I mean there are things I won’t do and so you know, in the end I’m never going to do a study that I don’t think is rigorous. But there are trade-offs to be made and, you know, my trade-off will always be useful for some rigour, yeah, there you go.