The other real complication is I’ve thought for a long time about public involvement, looking at it and thinking about it as a change management process. If we wish to see it as being normal practice and Sally Davies, the director of R&D for the NHS, has gone public and had it written down several times that she wants it to be the rule not the exception, and nobody would disagree with that. But, in order to do that you have to change behaviour, so it’s a combination of individual and organisational behavioural change and change doesn’t happen, it has to be made to happen and it’s a balance of drivers and barriers. And public involvement isn’t something that would just naturally happen because it’s great, because it means research takes longer; it’s a bit more complicated; there’s another set of people to be involved; it costs more. There’s lots of barriers to it and when the barriers outweigh the drivers, change doesn’t happen naturally so you need to push change, and it’s been quite frustrating for me to see how little attention has been put on, ‘How do we change people’s minds, how do we change people’s behaviours, what are the different approaches to getting more people to be involved?’ So that’s a complication and it seems to get more complicated the more we, the more people get involved. And a number of people who are really passionate about involvement, particularly researchers who are passionate about involvement, get so passionate about it they think it’s everybody does it and they don’t realise that everybody doesn’t and they’re not very good at encouraging change in their peers, which I find quite odd and quite frustrating at times. But they are probably the most effective change agents because people will look up to other people who do something when they see it’s effective, and they’ll be far more effective than somebody like I can be working for an authoritarian organisation. So, you need a mixture of top down and bottom up, but actually the peer to peer influences; you know if you look at all sorts of things where people have changed behaviour, the reasons, ultimately the reasons they’ve changed behaviour is because their peers have done it.

And clinical audit is quite an interesting example. Because I remember, when I started at the Regional Health Authority in 1992, clinical audit was just coming in at the same time that NHS consumers in research had just started and the concept of involving patients and the public came in. Twenty two years on, patient and public involvement is not normal practice but clinical audit is and was ten years ago. In fact, it probably only took five years to embed and part of the reason for that, despite initial vehement, professional resistance to it, was peer to peer pressure and continuous rounds of audit led to, you know those who were resistant to change being isolated and challenged by their peers who eventually changed their minds and they did it. So there was a top down dictat but ultimately it was the peer to peer pressure and influence that brought about the change. But it had that bottom up, top down mixture which we’ve not had in public involvement.

No, I think whether you’re a person who’s being involved or whether you’re a person who’s doing the involvement, you have to be aware of the fact that somebody’s lived experience may, you know may come back and bite them. You know depends what it is but sometimes it’s, there’s a lot of energy behind someone’s lived experience so it’s a major driver, but sometimes because people’s emotional states change and vary, there are times when actually it really hits back and bites you and suddenly you’re completely useless and you can’t do anything and you have to; you really have to be aware of, in the same way that you should always be aware of that whenever you’re talking to, or interacting, or have any form of relationship with somebody whatever the circumstances, whether they’re professional or personal, that people’s emotional states change and you need to be aware of, as aware as you can be, of circumstances and people get upset for reasons that sometimes are obvious and sometimes are completely not obvious.

So it is, I suppose it’s something that’s different in a set of relationships that if you are involving people in research, or research management, because of their lived experience you have to be aware of the fact that lived experience might become rather raw and might make them upset. It doesn’t happen often but it does happen and you have to be sensitive to that, and that’s time for, you know time out and look after them.

And that’s; I’ve seen that happen with some of the; some of the researchers have co-researchers, where actually the co-researchers are fantastic at that. You know they’re real advocates and they all just take time out and they will spend as long as it takes to help the person get through whatever issue happens to have arisen for them.

And that’s, and that’s an added colour to public involvement.

Well I’ve just talked about relevance and impact being the reasons to do research.

Yeah

But in terms of recording it.

Recording it yeah

Recording impact, I mean it. I suppose an awful lot of people are not very good at tracking or recording what happens when they do something. So I’ve been, this morning, at a meeting for a patient and public involvement advisory group for one of the NIHR biomedical research centres and they’re trying to identify and understand whether they’re making a difference. And the NIHR programme reference group I’m part of and now co-Chair, we’ve also been doing the same thing and you just simply need to record it because unless you say, “Well what did I do; what happened afterwards?” you’ve got no chance of knowing whether what you’re doing is actually making any difference or not, or whether actually it’s just good therapy and you’re all talking together and that’s great, but actually it doesn’t do anything. And because public involvement is what’s called a complex intervention, because we’re all different and we all interact with people differently and we all have different perspectives and views and there’s that other complication of representativeness are you there for you or, are you there representing other people? Sometimes it’s one; sometimes it’s the other, sometimes it’s a mixture of all of them. But, ultimately we need to try to, we need to try to measure things, you know measuring’s important. It might be seen to be dull and anally retentive but, actually it’s, you know if we don’t measure what we do in the same way as, you know that’s why you do research to measure things. You know, you measure outcomes in research studies, it’s what you do; it’s the only way you can make, you can measure if you’ve made a difference. And we have to find ways of recording what we do and seeing whether it makes a difference or not and then changing behaviours accordingly.

And there is quite a significant issue about who you get involved; how you get them involved and how diverse a population of people who get involved. And there’s been a lot of going round and round in circles about people who get involved and stay involved for a long time become professionalised and what does that mean and does make them less lay. And, well if you involve somebody who’s got no experience how are they going to add value because they don’t know what they’re doing, but then everybody had to start somewhere. So, these arguments are slightly self-defeating, a little bit frustrating and I think you need both. You know there are lots of people who’ve been involved for a very long time. I know quite a few people who, you know whose; you know lived experience was ten, maybe twenty years ago, but for whom it’s fresh. You never forget a significant experience either as a patient or a carer; it never goes away. Your perspective on it, and the way you channel what you’ve learnt from that experience may change, but you don’t lose that perspective; you just gain more experience. So, you have more experienced and less experienced people, not professionalised people really and I think it’s important to have both.

Yeah, yeah, yeah it’s quite interesting. So, if I think about the NIHR evaluations and studies, you know NETSCC as it’s called, Patient and Public Involvement Reference Group, I’m there as a lay member. But it’s, it’s working on a; it’s a research programme and I’ve got experience of being on the other side of the table and being a research manager. But, in what we do with the reference group I find it very easy to sort of wear my lay hat. So, whilst, and it’s the way it works. So, everybody uses a mixture of their lived experience, whatever that happens to be, and their professional background whatever that happens to be. So, for some patients and public who get involved in something they have a professional background in finance or building or something like that, which may have some relevance to what they’re doing, and then they have their lived; their health or social care lived experience and the two interact. And then research is something they may or may not know much about but they offer a perspective from their lived experience of understanding what it’s like to be on the receiving end of either treatment or research. That’s how that, the lived experience bit works. So, but actually understanding the process with which you’re working. So, because I understand what NETSCC does and how to manage and fund research and monitor it and evaluate it, it means that I can, you know I understand what they do and I can then see ways in which. It just, it feels to me, as it’s relatively easy to work our way that my lived experience and the way other people’s lived experience can make a contribution to that. So, I don’t look at it and think, ‘Well if I was managing that how would I manage that differently?’ I’d just park that and just say, “Well this is the way they do it and there’s no right or wrong way to do any of these things.” But I look at it, well that’s the way they’ve chosen to do it so, you know back to my three questions you know what, as a lay person, could I do; would I have the skills to do it and would it make a difference? And that’s, I find that relatively straight forward to do and I think probably most people do in a way. I don’t get tempted to tell them how to manage a research project. I occasionally get asked a question, “What would you do?” but only if it’s a direct question. But I wouldn’t, I wouldn’t have the temerity to suggest that they managed their work in a different way; it’s just the way they do it and actually you’re then going to become a nuisance if you start telling people how to do their jobs even if you might have a reasonable background to know how to do that, it’s just unhelpful. Doesn’t mean that people don’t try to do that from time to time but you know I think. I do find the kind of switching hats relatively straight forward.

Both have, I’d say they both need it but they both need the opportunity to be trained.

And that has to be based on individual learning styles and individual learning needs assessments, which is a rather formal term of saying, you know some people choose to learn and want to learn more about it and some people want to learn experientially.

But I think you need to be able to offer training and suggest that people learn in some way which may be formal or informal. But, researchers need to know, need to find out, learn how best to involve people if they’ve never done it before and how to do it better if they have and that’s a continuous learning process. And patients and members of the public who’ve never been involved before need to know what they’re getting themselves into which might mean a bit of training about research; it might mean going as far as The Voice course that I went on at Bart’s Cancer Institute it was quite extreme, you know most people who are going to get involved are not going to need to, or want to know, as much about cancer biology as I now know and the rest of the course attendants know. But, you need to know something about what it is you’re getting involved in whether it, you know public involvement or user involvement in whatever it is, health or anything else, you need to know what you’re getting yourself in for and you need to know how the processes work. So, you know its training but it needn’t necessarily be hugely formal. Or it could be hugely formal and you have to have a range of ways to address people’s learning needs.

Yeah

But it’s the same for both and that’s what I like about the Building Research Partnerships workshops they’re nice. What’s really good about them, what makes them work at that level and probably at that level only, is that it’s a shared learning process and they work at their best when there’s a mixed audience of professionals and lay people, because they learn with each other and they learn. The key thing about public involvement is conversation, is talking to each other and they find that in learning about public involvement they’re actually, they find out half way through the day, the sort of light bulbs go on. They realise, oh yes I’ve been doing some involvement.

Yeah

And they didn’t realise it, which is lovely you know and it’s; you watch people go on a little journey and you know the professionals realise that patients and the public are human beings too and the patients and the public realise that research is complicated but isn’t that complicated, you just need a particular skillset and you can meet them part way.

See it in action essentially. You know it’s the old see one, do one teach one approach actually applies to very many things, and I think that applies to public involvement. So, the best the way to learn about what involving patients and the public can bring and why it’s a good thing and what it might do is to observe it.

You know so, if you have a researcher however senior, who’s never involved anybody before get them to be an observer on a patient group or to just, you know be a buddy or an observer on a research project where patients are being involved and see it happening. Just simply observe and see what they think and that’s the best way; it’s probably the best way for anything really is, you know you need to observe and experience something before you do it yourself. I think it’s an awful lot of, it’s an awfully big ask for anybody to say, “Right you’ve never involved a member of the public, go away and do it on your own piece of research.” Better to do it in a safe environment with somebody else’s research first. So I think all people who are training to do research in health, in health and social care, should be taught about public involvement and should have an opportunity to experience it

It can only be normal practice because people want to do it and it can only become something people want to do because they see it adds value. People do things because they see it works and that’s the ultimate goal. I think you can’t force it to happen, but I think if you can introduce as many people to the concept and bring them along. So everybody’s got to go on that journey ultimately and I think it’s about the best ways of doing that are teaching it early. So, if you want something new, something different to happen then teach it from the earliest possible time. So it goes back to, you know things we want in our population are taught in primary schools. So I’m not saying we should be teaching public involvement in primary schools but, it’s about, you know and anybody who wants a career in health, health and social care, that involving the users of health and social care, whether that’s in service development or research, is just the fundamental part of their basic and post-basic training. You know we teach medical students and non-medical students about lots of things and it should include involving the people they’re, you know they’re treating and researching.

So that’s ultimately the way to do it is to make it part, just you normalise it you know so it’s part of teaching; it’s part of service delivery and it’s part of research and linking together. So, there’s a lot, there’s probably more people involved in service, improving the service delivery, than there is in research but actually the two don’t link together very well. So, part of what is, you know part of what would make public involvement normal in health research, would be by linking it to health care so that you can see the place both the research place has in healthcare and also the place that service involvement, so user involvement has in healthcare and research. So it’s linking those things together.

What is it you think about the people who know about it and aren’t doing who, I mean what do you think their concerns are; why do you think they’re not involving people?

A range of things I guess. I mean I find it hard to understand as well but, I think it’s probably a combination of there’s some pressure to only do things where there’s evidence for it and then the evidence, the hard evidence for public, you know for the benefits of public involvement, is slim on the ground, thin on the ground. So that’s one thing. So, show me the evidence it works well. It’s difficult to do that. Well unless you show me the evidence I won’t do it. So, there’s some quite sort of dyed in the wool type responses like that.

The fact that it is complicated, you know it’s not a straight forward thing; it’s not just find a patient and bingo there it goes, public involvement and its working. It’s managing relationships and there are people who are great and are really facilitative and there are people who are quite awkward and you’ve got people who want to tell their story all the time. So it’s not, it’s not a simple process and it’s very much an inter-personal management thing and some people are better with people than other people, so there’s that kind of diversity of responses. I also think that some people are a little bit, not exactly scared of it, but don’t understand it, don’t understand how you would do it and can’t quite see how it would all work and there’s a resistance to change in most people – it varies in its intensity but, it’s changing practice and some people are more responsive to change than others. Some people like it and embrace it and they’re the early adopters as it were. Others are really quite resistant to change because what they do works and when they get their research grants and they publish their papers and what else could it; what difference could it make. So, I think there’s a, you know that’s the sort of individual and organisational cultural sort of resistance where, if people haven’t seen an example; haven’t been exposed to it and it. Some people maybe even think of it as sort of political correctness and if they keep their heads down long enough it might blow away and then they can forget about it. So I think there’s a bit of that there. And also, I think the last thing really is I can easily see that in some circumstances it could be professionally threatening so, you know I’m a researcher; I’ve trained; I’ve done, you know, done a degree, done a PhD, done a year’s post-doctoral work; I know my subject, I know how to do research and you’re trying to tell me that a patient can tell me how to do what I’m doing? Well actually that’s not what public involvement’s about, but that sometimes the reaction that people get, “Well, you know if it’s so easy to do why did I bother doing the training; I’m the ruddy researcher.” So, it’s a really combination of those things and it’s, they all, essentially it boils down to lack of exposure to something to demonstrate that it works, which comes back to the sort of peer to peer influence, because most people who brave it up and see some public involvement in action, go and talk to some patients about their research. Suddenly sort of, you know the light bulb goes on and they say, “Oh yeah that’s really good isn’t it?” and you. It is really quite extraordinary how many people who are doing health research have never talked to a patient. So you know it’s tricky in that respect.

Yeah there’s, there is some evidence emerging and there was a paper published last year which showed that in mental health studies that did involve patients recruited better; so recruited more quickly and to target better than those that didn’t small difference but a difference nonetheless. And there was another study published a few years before in cancer which showed that a participant information sheet that had been improved by patients actually lead to the patients who were consented to the study, understanding what they were consenting to better than one that had been written by the researchers. So, they did a trial within a trial. So, there are two areas where, in a very practical level, where public involvement can make a difference and there isn’t much evidence because people haven’t made the effort to collect it, but actually there’s enough evidence; there’s enough information there because the system’s around, so around what the researcher ethics committees do and the Health Research Authority’s responsible for.

We could very easily identify projects where there is and isn’t involvement and then identify how long it took for those that are recruiting patients, that is to recruit the first patient, to recruit to target, if they recruited to target, and how long it took to publish the results which is some very simple metrics which might show a difference. So there’s. It wouldn’t be. It’s not, it wouldn’t be rocket science, it wouldn’t be that hard to do but would require a concerted effort, but it needs a driver from somewhere to actually do that. And there’s a. It’s a sort of, you know it’s one of these typical double edged swords there’s a little bit of an issue about whether you do and whether you don’t need evidence for something which is a matter of principle. And I sometimes feel that actually requiring there to be hard evidence that public involvement works seems a bit unfair because nobody would question involving a clinician in a piece of clinical research.

It’s blindingly obvious that they’ve got to be there. And actually in the same if you take the analogy with market research, it’s blindingly obvious that you need the consumers of whatever it is you’re researching there. So, sometimes I think it’s just, you know public involvement’s having to do more than it would have to do if it was something else.

Are there any other skills you think researchers need in order to be able to involve people?

Self-awareness essentially you know and it’s. One of the things that you learn or researchers, that you’ll know yourself, is a degree of self-confidence so you learn research you know you learn what you learn so you learn research methods, you learn about the area in which you research and you learn, and you learn to be opinionated in the right way. So, you learn where to find out information, so you know how to do your own research and your literature research, your background, and to be assertive and to get on and do things. You need to be a doer to do research, but actually you need to be self-aware that you don’t know everything. So, that degree of self-awareness, it’s like doctors, you know there’s been a long history of doctors you know doctor knows best. And my mother-in-law, my first mother-in-law was very much of that generation where doctor knows best, don’t need to know what the doctor’s done so she had quite a lot of operations in her life and actually didn’t really know what parts of her body were still there or not because she didn’t feel she needed to know because that was the doctor’s job which is quite strange, it’s an anathema to me.

Whereas nowadays doctors are now trained to say, “Well actually I don’t know, shall we try and find out together?” So, they need to be, you need to be confident in what you know but self-aware and honest about what you don’t know. So, other than the relationship bit it’s that self-awareness and honesty; sort of openness, transparency kind of thing.

What for me is the sort of killer question as a lay reviewer is, if you have this condition or a member of your family had this condition would you consent to take part in the study that you’re reviewing? And that’s a fantastic question because it goes right to the very heart of research, because there’s no point in designing a study you can’t recruit people to, and public involvement which about making sure that people do recruit to it. So it’s almost the only question, almost the only question you need ask. It’s always the killer question for me because a study might be phenomenally well designed, the statistics may have been terribly impressive and I can vaguely understand them. But actually, if the study isn’t one that would be attractive to be involved in because either it’s, the practicalities mean that it would be easy to take part as part of your care or, that, you know there are sort of other aspects that make it, you know you think it’s safe; you can see the reason for doing it; it’s relevant to your particular condition. If none of those things are true you’re not going to want to take part.

Can you tell me what you consider the difference between involvement and engagement?

Well I’d have said a very high level. Engagement is a more of a one way process of researchers engaged with the public to tell them what they’re doing and tell them what the results of what they were doing is, and there isn’t necessarily a lot coming back. There might be comments coming back or questions but actually it’s a, it’s more of a dissemination and a dissemination process, so a raising awareness type of thing. Whereas involvement is actually where you’re working in partnership with patients and the public, so it’s the doing with, or by, patients and the public. But there is a spectrum in-between it so, there is a sort of continuum of involvement which will start with engagement and actually, engagement can very soon become involvement when you then, the one way process starts to become a two way process and then actually it moves quite steadily on from there. But broadly speaking engagement is a sort of giving of information and involvement is a working with and by.

So, anything which means you’ve got more work to do could act against it, but equally that’s the cost that it might take a bit longer for each thing that you do and it might, yeah so it might take a bit longer; it might cost a bit more but ultimately, the benefit side of it is hopefully you’ll be more successful.

So, ethical approval, if you involve patients and the public, that’s not the reason for doing it but you’ll sail through ethics as long as your study is well designed. But, you know if your study is well designed which it should be if you’ve got patients and public involved because they should ask; they’ll ask elephant in the room questions and it will mean your design will be better, but then it will get through ethics more easily. So, there’s a benefit there; it’s not the reason for doing it but it’s a side benefit. So yes, its swings and roundabouts, it really is.

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.

What is it you think about the people who know about it and aren’t doing who, I mean what do you think their concerns are; why do you think they’re not involving people?

A range of things I guess. I mean I find it hard to understand as well but, I think it’s probably a combination of there’s some pressure to only do things where there’s evidence for it and then the evidence, the hard evidence for public, you know for the benefits of public involvement, is slim on the ground, thin on the ground. So that’s one thing. So, show me the evidence it works well. It’s difficult to do that. Well, unless you show me the evidence I won’t do it. So, there’s some quite sort of dyed-in-the-wool type responses like that.