As a quick example of that, we developed a thing called the Activity Participation questionnaire the APQ which is a form which goes alongside an established outcome measure, the Oxford Knee Score, and asking patients what they wanted on that form as a set of questionnaires. It [the content] was quite remarkable compared with what we thought might be on there. So, it wasn’t just about pain, it wasn’t just about function, it was about very specific things. Could they pop in and out of a crowd, could they run across the road? It was very important to get that sort of insight.

The message there is that we started off in one place and we have moved an extraordinary distance in terms of PPI and how we think about things. For me as an individual that has been quite a journey as well. I was very sceptical I’ve got to be honest, initially I thought, ‘Oh we’ve got to engage these people,’ and rather reluctantly, whereas now it’s a really rich resource to tap into. And you end up with a better research question and better research.

I’ve just set up another group as a; one of the programmes I deal with is babies who have had complications needing very early surgery. We’ve just had our first meeting a couple of months ago now and, again that was like the first meeting of the maternal programme, incredibly energising and I think I’ve probably still got it on my desk I came away with I think about five big flipchart sheets essentially full of ideas but there were lots of things that I would never had thought about. So I don’t know if you want me to go into specifics or not but we’re talking about babies who’ve got abdominal problems. So basically when they come home from hospital they’ve either got a great big scar, a wound in their abdomen, or essentially it was still healing.

How do you put a baby like that in a car seat where the clip is right in the middle of their tummy? So there are lots of things like that that come up that we would never think of doing research into. Other things that arose Disability Living Allowance I hadn’t thought about Disability Living Allowances but, you know, classification of disabilities was one of the big issues they raised because it affects what allowance the mums can claim. And the vast majority of the mums, in fact I think all of them, hadn’t been able to go back to work. All of these things that, you know, are as researcher, may not have thought about. I guess I would probably have thought about the going back to work but I would never have thought about car seats and I would never have thought about Disability Living Allowance.

And I guess the other, the change that we made on the basis of that was moving things forward. So that particular group we had been looking at following up the babies when they were much older but actually the group were really keen that we started the follow-up from when the babies were small. They were, we’d been a bit concerned that actually maybe the challenges, as a parent of a new baby with problems, had been too much to want to cope with being involved in research at that stage. But they were very clear that they would all be extremely happy. It’s not going to be the same for everybody but we can still ask, you know we had not been going to ask we can clearly ask.

I mean our project’s really interesting because it came from a parent of a child who has behavioural challenges and that father had had trouble getting an x-ray at the dentist for his child and wrote to us on an email and said, you know, “Is there any research about this?” And I know little more about dentists than going to the dentist myself and feeling anxious about that, so it wasn’t an area we knew anything about but we looked in, we followed our procedures for writing what we call our ‘what’s the evidence’ summaries that appear on our website that are based on things that families have asked us about.

So we looked in the usual sources of high level evidence, the Cochrane library and database of systematic reviews about x-rays and dentists and various words to describe disabled children, children with neurological conditions. And there is a literature out there about, you know, there’s a Cochrane review about whether you should use anaesthetics for taking x-rays in children with challenging behaviour. And we also sent an email to our family faculty and said, you know, “Is this something other families have faced or anything else about oral care and dentistry?” And we got an overwhelming response; you know, families have significant challenges managing children’s teeth either because the, you know, the neuro-disability affects, you know, self-care, tooth brushing or the dentist’s surgery wasn’t accessible or they struggled to get someone who would give the time in an appropriate fashion to enable the oral examination to take place. So it seemed like a massive issue and we wrote our ‘what’s the evidence’ summary and put it on our website and ticked the done box. But then we were approached by some dentists in [place name] who came across it and were really interested in it and that’s led to us having a working group where we have some dental researchers, childhood disability researchers and some parents in the room and that was a really successful meeting lots of sharing of ideas and, you know, building potential research questions from the bottom up.

And do you think there’s lots of things like that happen with PPI, that there’re these things you don’t expect to come out of it?

I think you need to be open to that. I think that, you know, going in that open way is really important you know, because if you knew what you were going to do why are you wasting everybody’s time? I think the reason for engaging with people is because you don’t know stuff and it’s surprising how much we don’t know when you really admit to yourself how much do I really know about this? You know, if we design the study in this way would that really be acceptable and might there be other ways and – I’m always amazed that our, that you know, the parents come back at me with different perceptions and viewpoints and I think it’s probably just because I’m a bit dim. But I think anyone could have that openness and uncertainty about what the right thing to do is.

Has that collaboration with your partner in the carers’ project has that made your research better and if so how?

Yeah. See in this, I’d still say it depends what you mean by better and let me think. So I would say, I mean pragmatically speaking, that project would not have existed without her we weren’t going to do that study. So in the sense that there is a potentially neglected area and my experience so far has been that people think it is a really neglected area. People you know are really glad that research is being done under this topic. That’s better because that wouldn’t have been done unless she had been there to instigate that work. I think pragmatically from my point of view it made my, you know, that start of the project thing where you’re desperately trying to get people on-board and you’re contacting loads of organisations and saying, “Please help me recruit participants,” and that kind of thing. When I could say, “This is because my collaborator on the project, she was a carer herself, and she really cares about this issue,” I think that opened doors much more easily so I think that was a practical kind of benefit. I think in terms of the research itself, because in some ways we did; so it was a qualitative study we did interviews, we did analysis of the interviews and in some ways I think that went, as it would have anyway.

What I want to know is if her; I think a lot of projects get to that stage and then there’s kind of that lull and things can get left, and in some ways I think it is her drive and her passion to see this go somewhere that means that I’m still involved in it for example, and that we’re still taking this forward; and maybe that, again it depends what you mean by better so in that sense I think you know I wrote my paper as perhaps I would have wrote the paper otherwise. You know it has stuff about sociological theory; you do some grounded theory stuff, you write it up, put it in a journal whether that’s better because she was on-board I don’t know. But now I think this focus on, she just says, she’s like, “Oh great it’s published, so what does that mean? How is this going to help carers; what can I go and tell these people I’ve spoken to the project about?” and that I think is good and that I think having that voice in your ear to go, “So seriously what are you going to do with this now?” I think that makes it better but it’s weird, I would say I’m glad about that because I think, I think that makes me focus on what’s going to happen more.

I would say at the same time it’s not always easy and it can be a struggle in the sense that, you know, there’s half a dozen things I’m meant to be working on and to then feel like, ‘But I should work on that because I now have an obligation to her because we’ve gone into this together and we started it running and I should stick with that,’ and I feel that very strongly but I don’t think there’s support for that a lot of the time you know because I think it would be, I think so the higher up it becomes like any other project it’s like, well you know, is it going to go on your CV in this way; is it going to definitely lead to this; does it fit with the overarching themes of the faculty that we’re meant to be doing to please the Dean or something and, so for me I feel, I feel like that should be one of the things I’m evaluated on to be honest. I feel it should be something that you say, “Well I got into a partnership with this person and I’m sustaining it and we’re going to carry on with that.”

You know it wasn’t a hit and run of kind of take your idea because it helps me get a grant, I’ve got a paper, see you, bye. I think there should be more encouragement sort of for people to do that because that would then be kind of this thing, genuine involvement and genuine collaboration and I think that’s only fair really to people who, who have, you know put their heart and soul into kind of doing some research with us. Sorry so to come back to whether that makes me then whether I think that made it a better project or. That made it different to other projects I’m on and I think, I think I feel more confident that this is a project that matters and that it’s a valuable thing for us researchers to be throwing our time at. So that feels better for me and whether that’s objectively measureable and better I don’t know so yeah [laughs].

I suppose one of the things which always comes out is people just don’t see the value in it. They don’t understand why you would ask, in our case young people, about your research and about your questionnaire and about your interview schedule. And I find that really difficult coming from a youth work background because I’m the opposite. I’m like well wouldn’t you because you’re not a young person right now; you’re putting together, say for example a questionnaire, but how do know how a young person’s going to read that or how are they going to take that questionnaire and we’ve done projects where we’ve gone out to primary schools as well and we’ve worked with year six pupils on questionnaires and we’ve completely had to change the questions. We had one question which talked about peer pressure and thirty-five out of the thirty-six children which were in our focus groups about the questionnaire, did not know what peer pressure was. And it was only when you stand back and we reflected and thought, ‘Well actually it’s a very adult term isn’t it?’ Eleven year olds are not going to use the word peer pressure so. And when we explained it to them they were telling us, “Well you could just say it like this and.” So I think it’s the value for some people.

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.

So I’ve primarily up until now been thinking of the condition I study as one that effects memory and I’ve been interested in bits of the brain that have to do with memory and how to understand the processes that subserve memory and so forth and I’ve been thinking about them in terms of epileptic discharges in the brain and areas of brain damage and now I’ve encountered people who have accepted that all that is quite interesting and important but are really bothered by the effect that their epilepsy is having on their sense of themselves on their relationships with their family particularly to some extent with their friends. So that has pointed me in a, a much more psychological direction if you like than, than I’d been pointed in up to then, a direction that has to do with, with the social psychological impact to the condition. So that’s, that’s kind of a change of direction, it’s not an area I am terribly knowledgeable about or feel so comfortable even as I do with the, the neurology of the disorder and I think it’s fascinating and I can, I quite understand why the people I’ve talked to would like to understand that aspect of the problem better and see whether there is something that can be done about that, if there are ways in which they can enhance their memory which may make it easier for them to talk to reminisce with the people they’re close to. Of course it’s unpredictable it’s hard for me to say how I’d feel about the, other change of direction which yet again I can’t anticipate. But I think in general it’s, it’s interesting when a new window opens in a room which we’re used to living in.

Another great insight from the project was probably for me, an eye-opener, was that most of the impacts are on people rather than on the actual research. So I think that’s something that’s probably mis, not misunderstood, but not known about or taken in, you know, taken in account of you know; this public involvement is about the people so that’s all the people that, you know, all the stakeholders within a research team and the people that you enrol to collaborate with.

So, you know, and that’s the main thing and that’s also where most of the positive and the negative impacts happen. And then the, almost a secondary part is about the actual impact on the actual research and this is based on our review of the literatures. So I think, you know, when, you know, I would tell to anyone who engages in it it’s more about, you know, it’s going to challenge you as a researcher and it’s going to challenge the members of the public because everyone has different values, expectations and impacts that they’re interested in. But it’s primarily about that interaction and this is where you’re creating impacts and not the actual research. So and that’s, you know, so if, if you take that down into numbers, you know, so sixty, impact on research, sixty different impacts on the various phases of the research and it’s a hundred and twenty impacts reported on the actual people involved. So that’s twice, you know, it’s twice as much, twice, oh you know, more important not more important but you’ll create more impact on the people and on the research.

What would my message be to young people that are thinking about getting involved?

I think I’ve been inspired as a researcher by the young people I’ve worked with over the last couple of years, their enthusiasm and the ideas that they brought to the research and they’ve certainly helped me to develop as a researcher, so I am very grateful for that. And so if other young people can go out there and do the same for some other stick in the mud researchers kind of maybe like I was, then that would be great. I’ve also seen that the young people I’ve worked with have felt inspired and confident and important. That was a word that was used just recently to one of our young people that attended the external advisory board to describe, you know, what the group had been up to over the past year. And she said, I feel really important! And I said, Well you are and your message is very important. So if you get involved then from working with the young people I’ve worked with it seems that there’s some stuff you can get out of it and you can make a difference. And I think that’s the important thing that you, you need to ask how your involvement is going to make a difference because ultimately that’s what you’re there for.

So I think, yeah it’s interesting because sometimes I suppose the researchers will come and they’re at a stage where it is very first ideas.

So they have a lot more flexibility to take on what the young people want. Sometimes if you go in for a sort of, a call and they’ve put a call out, you kind of have to stay within the certain limits and parameters. But, I think it’s about initially letting the young people know what the limitations are and why we have the limitations and then feeding back afterwards and just saying, “This is what we’ve tried to do.” I think some of the things which became quite clearly when we started doing the quality assessments with the young people is that giving quite general feedback is not what they want, so researchers just saying, “Oh yeah it was lovely to meet young people and they’re obviously very knowledgeable and they told us a lot of things.” When the researcher comes back and says, “You said X and we did this about X.” So we’ve got one of our researchers who, he was developing up an intervention about smoking and one of the things the young people had said to him was, “Maybe you should think about, if you’re going to do this around the settings, you want to do it around sixth form or further education settings, is you should think about the access to tobacco because, although you can’t buy tobacco until you’re eighteen, if you sometimes take your tie off and so if then, you can go into the shop and they’ll sell it to you so maybe you should do something with the local shops around communities.”

And he’s actually added a whole element of his intervention around working with local shops to the sixth forms and doing mystery shopper exercises with young people in those shops to check from a research point of view whether it’s made a difference. So I think those specific feedback it’s a lot better for them. But yeah we do have times where the young people and adult agendas don’t quite align. I know we’re trying our hardest to [laughs], to make that, make it all as I don’t know what the right word is make it as understandable to the young people of our restrictions as well I suppose.

I think in some cases it was fairly clear to people what their impact was. For example, when, with a particular systematic review, we had an umbrella kind of idea of what a research question was, but it was too vague we needed to focus down on a few key points. So before the meeting where we were going to make this decision, I wrote down several examples of things that I thought were reasonable to focus on and, as always, had another option if someone had another idea. And in that meeting we discussed them and picked five from the suggestions. They weren’t all as I’d written them down some of them were tweaked to what people thought would be better and in that case, although I didn’t say, “Can you see how, you know, can you see what effect this is having?” I think that was kind of instant feedback that they said what they thought; we said, “OK that’s what we’ll do,” and that was the feedback, that was the extent of it.

But a couple of times, two times that I can remember in the last two years, both occasion with different parents, they said to me, “You know, sometimes I wonder if we actually have any impact on what you do at all or if, you know, we’re actually, if all this is even, you know, you even listen to us.” And actually both times I could genuinely say, “Well I can only tell you about my experience and the projects I work on. But you do, and we do listen to what you say and take on-board your opinions and try to, you know, what you say is valuable to the research, it’s not just something we do, you know, to pass time.” But sometimes I think, you know, if one or two people have that concern other people will be having that concern, so I think we could have done feedback better definitely.

And my job as part of the management group I’m, I’m responsible for the involvement parts of the project and, and my job I think is to make sure that we are keeping to our values that we, you know, we wanted partnership working, we wanted young people to have some capital and some influence now that doesn’t mean that whatever they say goes, equally it doesn’t mean that whatever the managers say goes, it’s a communication, it’s a working out, you know who, who’s making the final decision on this one and how we’re going to get there what are the decision points to make along the way and who’s responsible for which parts of that. I mean I think that’s true partnership working. I think this idea of creating a protected space by somehow inviting lay people in to a room or into your project somehow creates this bubble of perfect sort of you know, a perfect space for people to be able to suddenly be skilled up and make all these decisions and has the power and, and you know, the confidence to, to be part of the research, you know, a piece of research. That’s, that’s not how it works it’s like any working relationship it’s negotiated as you go on the basis that hopefully a very solid vision of how you want that relationship to work. So yes embedded, part of the management structure working in partnership, having some real capital and influence and being supported again I think that’s another big part of my job supporting them to either develop the skills or think through things to be able to deliver effectively on an end product.

So even when they’re given the sort of the task and told to go away and do it, they don’t go off and work on their own with that. I’m always there and my research team within the project is always there to help them achieve what they want to achieve, but they’re telling us what they want to achieve and you know the end product tends to look, you know, very much how they want it to look. But we’ve supported them. So I think those are my key roles is making sure that involvement happens in the way that we think it should be happening and the way we envisaged it. And to support young people to, to play their role and play that role whatever it is effectively.

If you think about anything in the research, the research cycle, from generating research idea through to designing a study; putting a study into action and then implementing it or, assessing studies to give them funding or any of the jobs that are done in research. There’s clearly a skill-set that’s required to do each of those particular tasks and the number of different perspectives that are brought upon that. So, it’s about considering each individual element of the research cycle; each individual task and saying, “Well who does that; are all the relevant perspectives there and, if you’ve built in a public perspective to that, how would that impact on the decision? Would you bring in something to that decision which might make it more relevant or might make it more likely to have an impact?” And you need to ask yourselves those questions. So, is there something a patient or member of the public could do; would they have the skills to do it or could they acquire them fairly quickly? And if they then did that would it actually make a difference. And, it’s not always the case that it would so, a lot of people think well the patients and the public have little or no role in analysis of data and interpretation of results. That might be true for a lot of research but it’s not true for all research. So, the Macmillan Listening Study that I was involved in, setting up and managing, had public co-researchers and the public co-researcher’s role was to both collect and analyse data alongside the professionals, so they didn’t have necessarily the analytical and statistical skill base, but they still had a role in making sure that, and helping the researchers to make sure the right data was collected and that they analysed it in a way that was consistent between the different, in this case, focus groups and that the interpretations made sense. So there is a role there but if you were talking about a piece of laboratory research or, say some having spent a little bit of time recently on a course, going into the laboratory as a patient advocate, which is an unusual thing to do, there would be little role that patients could have in trying to analyse histological data because you need a really trained eye for that. So, there’s not real added value there; that’s a kind of, in that instance, there’s a tumour there or there’s not a tumour there and actually you need a lot of skills to do that. So, that, yeah it’s unlikely your patient and public could help there so you wouldn’t involve patients and the public in that aspect of it.

But you might involve them further down the line in terms of well now we’ve got this information what do you do with it and how do you make; how do you make a difference to people’s lives with it. So it’s, the phrase horses for courses, so it’s important to ask those questions and to be constructively critical at each time. And there isn’t even necessarily a job that a patient and a member of the public could do because they might get in the way. So, you know it’s not a case of there’s always something they can do and you could always train them up.

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.

So but in terms of benefits I think that it; if a researcher goes that way to understand the perspective of the people that are ultimately going to benefit or be affected hopefully by the research, it seriously changes how you think about data and how you, you know consider. I mean I’ve got an MRes student at the moment and she set out to do this work highly informed by psychological educational theories and then she did a pilot interview and she came back and she was just overwhelmed by this person’s, how that person was fighting against the sort of social system, it just wasn’t there for her like, you know it was alienating her and so she then kind of had to rethink her entire. And so it’s related to that obviously speaking to the people that will benefit or not from what you’re doing. Yeah I think also though there’s this balance because if you’re spending a lot of time trying to explain what you’re trying to do and blah blah blah it does take your time off doing the research. So it’s not entirely positive and I think that if people who are involved don’t understand research then they can challenge stuff that, you know, oh for goodness sake, if people had been discussing this for a million years and this is the way it’s done now and you know. So it’s a balance, it really is.

As a quick example of that, we developed a thing called the Activity Participation questionnaire the APQ which is a form which goes alongside an established outcome measure, the Oxford Knee Score, and asking patients what they wanted on that form as a set of questionnaires. It [the content] was quite remarkable compared with what we thought might be on there. So, it wasn’t just about pain, it wasn’t just about function, it was about very specific things. Could they pop in and out of a crowd, could they run across the road? It was very important to get that sort of insight.

The message there is that we started off in one place and we have moved an extraordinary distance in terms of PPI and how we think about things. For me as an individual that has been quite a journey as well. I was very sceptical I’ve got to be honest, initially I thought, ‘Oh we’ve got to engage these people,’ and rather reluctantly, whereas now it’s a really rich resource to tap into. And you end up with a better research question and better research.