I don’t know whether, you know, anybody can say anything to people who are so sceptical that will make them change their minds because, you know, if you have a mind-set which is I’m the expert, I know what I’m doing, I don’t want any lay person interfering with my work then you know it’s very hard to break through. I suppose it is around using for a, that people use all the time in which, in which examples of good PPI practice and examples of how things have made a difference, you know had positive outcomes. It can be disseminated and celebrated I suppose that’s not happening enough you know if you have academics who get, who’ll get valued on the basis of their research income, their research publications, possibly, you know, their teaching number of PhD students.

If there is no way in which PPI is valued in any of those then people won’t respond in a positive way or do it or even consider that there might be something in it because they’re not, that work is not acknowledged. People who do PPI tend to be working, you know, in their own time they’re doing things independently creative. PPI is expensive so that’s why often the costs are sort of pushed down to keep the research costs and total down. You know, there are so many barriers and it’s a surprise that people do it anyway because it isn’t valued usually by their institution. There is no way it can be celebrated. You know I haven’t come across any awards that are being given for, for good PPI practice. INVOLVE is working very hard but they can’t do it all. You know they’re doing a fantastic job but their remit is so huge and it can’t be the NIHR who does it all, you know. It needs to be something that’s celebrated much more widely and acknowledged and recognised much more widely than it currently is.

I don’t think you can say anything to one individual to make them change their mind. You know, it’s got to be in the water, it’s got to be in the discourse and that will make people think, Oh hang on I used that about PPI, but you know maybe there’s something in it. And you know, I have spoken to lots of people who have said to me, “Oh I’ve always been a real sceptic and then such and such happened,” or, “I read this, such and such,” or, “I heard you speak about something,” and, and that’s what just starts people thinking, Oh maybe there is something, there is a value here that I hadn’t previously recognised. And people who, and often people have to demonstrate, you know, some PPI involvement, and they will opt for something tokenistic and it’s, if you get the chance at that point to say, “Oh I see you’re doing such and such, I wonder had you considered?” And then if somebody is receptive they might say, “Oh yeah,” or member of their team, you know, you might just, you might just stimulate their thinking and their creativity. But, you know, there is no magic bullet where you can turn a sceptic into somebody who fully embraces PPI in their work.

I don’t know whether, you know, anybody can say anything to people who are so sceptical that will make them change their minds because, you know, if you have a mind-set which is I’m the expert, I know what I’m doing, I don’t want any lay person interfering with my work then you know it’s very hard to break through. I suppose it is around using for a, that people use all the time in which, in which examples of good PPI practice and examples of how things have made a difference, you know had positive outcomes. It can be disseminated and celebrated I suppose that’s not happening enough you know if you have academics who get, who’ll get valued on the basis of their research income, their research publications, possibly, you know, their teaching number of PhD students.

If there is no way in which PPI is valued in any of those then people won’t respond in a positive way or do it or even consider that there might be something in it because they’re not, that work is not acknowledged. People who do PPI tend to be working, you know, in their own time they’re doing things independently creative. PPI is expensive so that’s why often the costs are sort of pushed down to keep the research costs and total down. You know, there are so many barriers and it’s a surprise that people do it anyway because it isn’t valued usually by their institution. There is no way it can be celebrated. You know I haven’t come across any awards that are being given for good PPI practice. INVOLVE is working very hard but they can’t do it all. You know they’re doing a fantastic job but their remit is so huge and it can’t be the NIHR who does it all, you know. It needs to be something that’s celebrated much more widely and acknowledged and recognised much more widely than it currently is.

I don’t think you can say anything to one individual to make them change their mind. You know, it’s got to be in the water, it’s got to be in the discourse and that will make people think, Oh hang on I used that about PPI, but you know maybe there’s something in it. And you know, I have spoken to lots of people who have said to me, “Oh I’ve always been a real sceptic and then such and such happened,” or, “I read this, such and such,” or, “I heard you speak about something,” and that’s what just starts people thinking, Oh maybe there is something, there is a value here that I hadn’t previously recognised. And people who, and often people have to demonstrate, you know, some PPI involvement, and they will opt for something tokenistic and it’s, if you get the chance at that point to say, “Oh I see you’re doing such and such, I wonder had you considered?” And then if somebody is receptive they might say, “Oh yeah,” or member of their team, you know, you might just, you might just stimulate their thinking and their creativity. But, you know, there is no magic bullet where you can turn a sceptic into somebody who fully embraces PPI in their work.

I think it’ll only work if people believe that their, the involvement of patients and the public will have a positive impact on their study and if they are clear about how that involvement will have an impact. If they have woolly ideas about, well you know, if I’ve got a couple of people sitting on the steering group they will represent the patient body or carers in general, or the members of the public in general that’s not going to work because it’s too woolly, it’s too diffuse. And what a terrible burden to place on these two poor people who are sitting in that room, they can only ever represent themselves, they can only ever talk about their own experience or vicariously about the experience of other people. So putting that burden on them I think is really unrealistic and unfair. I think, you know, researchers have to think that through and you know, yeah the issue of representation is a hugely contested thing, you know, because you know the clinicians and the researchers aren’t representative of any population so why should, why should patient representatives be so

So that’s my role at the moment really leading, leading PPI and helping other people to think constructively about PPI to avoid this horrible tokenism cycle, you know, where people don’t believe it’s going to work. But they have to do it so they do something to ostensibly show that, you know, they are, they are involving patients but it is in a very ineffectual, unhelpful way which leads to no impact, no difference and then that whole idea about PPI actually being the Emperor’s new clothes is reinforced. So it’s an attitude of mind needs to be supported by high quality resources and good practical advice. As I say it’s about creativity and thinking about your project and how patients can be heard and there might be a myriad of ways in which that can happen.

And then I think the third strand that’s really important for, regarding my vision or our vision for PPI in CLAHRC is to work with people out there whose responsibility it also is to engage the public in the development of their services. And, and the CCGs who are still – the clinical commissioning groups – who are still, if you like in their infancy, are having to learn very fast about how to do this. And I think it’s really important that as a higher education institution we’re at the forefront of supporting these people and what they’re doing because it’s tough and a lot of them have got quite there are a lot of expectations about what they and their teams can do to involve a local community. So we’ve hooked up with them, we’re collaborating with them and I think we can support them in their thinking about public engagement and how they might go about involving seldom heard communities. And we can tap into their practical know how you know, knowing what practice serves, you know, a high level of say asylum seekers. You know, where does the Somali community go for their health needs? Who do they contact; what practice do they go to? So I think working with people who have, who work in the public sector who have got a responsibility and who are working in the field of public engagement, are our natural allies, and I think we need to work with them.

I think the dichotomy between, you know, public PPI in research and public engagement in public services, service redesign, and an implementation is false. And we need to bring those two worlds together because, I think, just looking at impact of PPI in research, especially in health related research, is not helpful. It’s what happens to that research down the line that’s when you fully realise the benefits of PPI in the knowledge generation part of it. You know it’s like looking at a journey and stopping half way you haven’t got there yet. So why look at impact half way through the journey look at impact right at the end of it and then the people who were involved in helping you design the study, think about your methods, think about all sorts of practical issues around your data collection, your data analysis. The governance and management of your project should be the same people who are involved in making sure that that research is implemented and evaluated, and then any gaps and knowledge identified, and that the whole cycle restarted with, OK we know this, we know that but we don’t know this yet so we need to, we need some more research to do that, And I think, you know, that’s how it should work, not just PPI in research, it’s a too short a timeframe to evaluate impact in.

So that’s my strategy [laughs].

So one of the dangers of the high intensity type PPI is and by that I mean people who are serving on committees in quite formal roles is that they become socialised to the world of the healthcare professional and the academic because they come to the University for their meetings and they take part in meetings that are, you know, research and clinical practice focused. So from a socialisation point of view, you know, they will, it’s a quite natural thing to do, they will adjust to that world rather than bringing their world and experience into that environment. I think it would be less likely to happen if meetings were held in community settings

Where the researchers and clinicians were guests. But, you know, as you said that’s not practised very often and it’s potentially quite intimidating and threatening to researchers and clinicians, which is interesting because that’s exactly what they do, do to patients and members of the public when they ask them to, you know, to come to formal meetings. And so in that environment it’s very easy for people to, what used to be called ‘going native’ in, you know, in the world of anthropology and ethnography; that people adapt to their new environment so well that they start to want to fit in so much that they do not challenge the views of their colleagues in the meeting and they’re less likely to be able to convey the lay perspective. And I think that is increased by training that focuses on research, research methods because it professionalises the lay person even though, you know, they might not have any formal, they won’t have any, any formal qualifications in that. Although, some training programmes are very keen to equip lay people with research skills to enable them to do research, and I think that is fine as an activity that is great you know, I would really support that but they are, they’re not patient and public involvement advisors, they become community researchers or lay researchers. But that’s not PPI, and I think it’s really important to distinguish between that.

If you train people up’, as it’s called, then you know you are turning them into a version of professional researcher because you are equipping them with that skill, with those skills. I don’t think that’s PPI and so I’m very worried about people whose role it is to be PPI representatives or PPI advisors on those formal research steering groups; should bring with them that other perspective, that independent perspective, their outside perspective and I think that is silenced if people become too professionalised. If they become PPI experts, if they become formally trained in research I don’t think that’s helpful. I think it’s a great thing in and of itself to develop individual people and their skills in what they want to do, but it is not PPI. I suppose that’s where I think the dangers are in providing formalised training.

So I’ve used PPI in my own research but currently my role is one of leading patient and public involvement and support, leading it for the CLAHRC and developing a vision and putting that vision into practice – and I can talk some more about that later. But also supporting other researchers who may well not be that aware about the role of patients and the public in research and how they might go about it, while at the same time experiencing the expectation that they do so. And that puts a lot of neophyte researchers or clinicians into a difficult position because they know that they should be doing it because that’s what the discourse is from funding bodies, or the majority of funding bodies, certainly the NIHR the National Institute for Health Research. But there might be messages that they get from colleagues who say, “Ooh you know not sure that that’s a good thing to do and what do patients know anyway; and patients come with an axe to grind and they’ve got an agenda and they might just derail your research project and it’s really difficult to know,” and others will talk about tokenistic involvement.

And a lot of the work that I do for the RDS (Research Design Services) is around getting people to think constructively about the role of patients, carers and members of the public in their research studies, and that might be very different from one study to another. I think it’s a way of thinking about research that is important not sort of valorising particular methods, such as, you must always have, you know, two PPI advisors on your research steering group that might not be appropriate for the sort of work that you do. You might, I think it’s about giving people permission to be much more creative in the way that they involve lay people and patients in their work and I suppose if I’ve achieved anything that would be what I try to do.

And I thought hard about how you can make it happen in meaningful ways that it is meaningful for the research as well as for the individuals involved, and in ways that, that pushes the conversation on, pushes it forward, and gives people intellectual stimulation as well because there’s – There is a perception that the doing of PPI can be devolved to the most junior person on the team and I think that’s potentially a danger because it’s not, it’s not terribly helpful for the most junior person to be lumbered with something that is still quite so poorly understood and theoretically for poorly evolved poorly, you know, evaluated and the impact poorly understood. And yet you ask the most junior person to carry it out – it’s nonsensical I think. It needs to be thought about and integrated into any project or programme at work, of work, at a very senior level because it is intellectually challenging and by ignoring it, you know, you’re really not going to move the field on.

Yeah it, training is, you know, the concept of training researchers to do PPI and training PPI advisors to, to support researchers is really hard. Because you, the danger always is that you end up with a very reductionist cookbook type approach to, because you’ve got to talk about, you’ve got to talk about this, you’ve got to talk about that, you can’t leave out this, you can’t leave out that. And so you end up with something that’s fairly structured. And I do, however, think that letting people use online there’s some fantastic online resources and Healthtalkonline for example, is one of those resources that get researchers, for example, used to hearing people talk about their illness experience or their experience of services or their beliefs about health and illness. I think that’s really important because often it’s about choosing the right words, using the right language to communicate with the other, you know, the other being the patient or the researcher as far as the researcher is concerned, as far as the patient is concerned, or the involvee is concerned.

So again digital technologies have made it possible for people not to be observed and to independently access and use resources to expand their understanding and their awareness. And as I said to you I think right at the beginning, I don’t think involvement practises rely on formalised knowledge that is important but it’s necessary but not sufficient and that some of the awareness and the informal knowledge needs to be harnessed as well, and how you do that is really difficult. But I think, you know, I come back to my point about developing a supportive infrastructure for PPI which involves establishing ongoing continuous collaboration and partnership where, you know, you might have internships; so you might have PhD students or junior researchers work with groups that have been involved in research or are involved in research, so you’re developing capacity. So training becomes less about developing particular skills and expertise it’s more becoming immersed in a community of practice which is centred around patient focused research or, you know, lay person focused research, in which case training is less about intellectual development or skills development.

It’s more becoming immersed in the culture in which this is what you do and this is in the way that research is done, implementation is done. Do you see what I’m saying it’s much more, it’s much more holistic than just looking at people’s training needs. People need to become part of a culture, part of a community where that’s the natural way of operating, there is no other way but involve people and these are the people. And so people will have met people who they can involve so that it doesn’t become a thing, “Oh, you know, who do I contact?” it’s, you already know because you’ve already worked with them and it’s natural to go back because they’ve become your friends or, you know, you’ve done some, you’ve done some activities with them previously. And I suppose that’s where you want to get to in order to develop true partnerships with local communities and patients.

Because there isn’t, there isn’t a framework for thinking about PPI, there isn’t a framework for reporting on it, and because it’s not been taken seriously enough, there is a lack of reporting guidelines for PPI which means that there is stuff out there reported that you didn’t know whether that’s all they did or that was the amount of lines or words they were given to report on PPI which makes it a really difficult. So with colleagues I’ve done a review of the involvement of minority ethnic groups in applied health research and that was in the UK, North America, Canada and the US, and Australia. And we can only go on stuff that’s been reported and, you know, some of the, some of the studies have got very detailed and very clear descriptions of how people were involved, how local communities were involved, whereas others there might just have been a few lines and you don’t know whether those few lines behind that piece, it’s a huge sort of array of practices or whether it was just tokenistic.

So that’s the problem of a wider assessment of the impact of PPI in health research. So colleagues are looking at reporting and standardising reporting so that it becomes more, more manageable because what we ended up doing is, is contacting authors and asking authors to supply more information. But you know, that’s a very laborious, unwieldy way; also not terribly robust because, you know, you can’t always contact the authors. So reporting is one issue. The lack of clear, some intellectual clarity about what we mean by impact is also an issue. You know, is impact that your recruitment was, was good, but compared to what? So you can’t set up an RCT to test the PPI intervention it doesn’t make any sense. But you know, but therefore because you can’t sort of play the game of the hierarchy of evidence you can’t ever produce evidence in PPI that is robust and strong with regard to its impact – even on something relatively simple like recruitment rates. So that’s a real measurement, the lack of measurement is a real issue. So you’re always relying on which in the hierarchy of evidence is relatively low down the line, its qualitative evaluations of impact. So that makes it difficult.

So being able to walk between worlds of the, the world of the researcher, the academic world, the clinical reality world as well as the world of the patient, the carer, the lay person who has had to become part of the service. So I think that’s really, that’s a really important aspect which is why I’m saying, you know, don’t leave it to the most junior member of the team. And then obviously communication and interpersonal skills are really important – being facilitative and, also people are quick to rush to judgements that people are uninformed or people’s, people are forever talking about their experience and it’s not, you know, yeah we don’t want to hear yet again about, you know, what your experience was. Maybe, you know, the patient/public involvement person who’s on your team expects to be telling his or her story all the time because that’s what they’ve been told. Invite them to think differently or to contribute in different ways that might be more, that might move the team forward. And I think that’s quite important not to rush to judgement about, and say, “Oh people aren’t informed or, you know, they don’t know what this is about.”

Give people a chance and think about the contribution they make and not just in which way it is helpful, unhelpful, but in which way it is helpful so not rush into judgements; not rushing to close things down all the time because you’ve got a deadline to meet. I think, you know, that’s important those are sort of human skills I suppose. And I think communicating very complex scientific issues in ways that can be grasped by the non-expert, by the lay person, and that’s a really difficult skill, you know writing lay summaries, communicating complex concepts in ways that people can grasp and work with is hugely important. And sometimes people hide between jargon; hide behind the complexity of their work rather than talking in a facilitative way about it.

What other skills? Creativity you know, I think you need to be creative to design ways of involvement that are meaningful, not just for the project but potentially, you know, allow the person who you are involving to thrive and develop his or her community or social network to think about research because he or she will go back and talk about positive and negative experiences and if they’re positive experiences they’re likely to help others, also volunteer to participate and I think that’s important.

I think it was an MRC funded study, which developed the PiiAF framework – has been very helpful in establishing some of the intellectual work that I was thinking about. You know, being clear about the values that underpin, that underpin your involvement activities, why you want to do it, what your, what your theory of it, your intervention theory is you know I’m doing this because I want to achieve this and in order to do so I need to choose the following tools, the following methods. I think, you know, that’s sort of conceptual clarity is really important and then developing an evaluation plan, but again not from a checklist type of, through a checklist type of approach, but through a very pragmatic and individually focused project focused standpoint, and it takes time and I think we ought to be unapologetic about the time of thinking, planning, development etc. it takes you, you’re not, you don’t expect to put together a research plan in half a day so don’t expect to put together a PPI evaluation plan, you know, in an hour – it takes a lot of thinking, talking through developing to do so. But that has resource implications.

But if it’s always devolved to the most junior member of the team it’s not helpful because if you don’t provide support for that member of staff, you know, research proposals that are not supervised by senior investigators tend not to get funded because they’re not of a terribly high quality, and the same applies to PPI evaluation plans.

And I suppose the most straight forward thing is people who work younger people who are in full-time employment who can’t, you know, find time between two and four of a Thursday afternoon to be part of a steering committee. So it’s not just people who are differently-abled or from different from different ethnic or cultural backgrounds, who are so called ‘hard to reach’ it’s people who are in full-time work or full-time education who will find it very difficult to participate in health research. So I think that’s an important point to bear in mind.

So, so we need to think of methods in which, through which we are able to reach out to a much wider constituency who still has a huge stake in the evidence that we create and produce, and the way that we implement their evidence in practice. So, social media, digital technologies have opened up a really great potential for us to tap into people’s voices. And so, another strand of my strategy involves the development of an online interactive collaborative platform through which we can invite, or get people to buy into membership of a panel, an online panel, that self-selects what area of research and implementation he or she is interested in. So what’s happened in PPI structures, organisations people who have responsibility for PPI, is that you end up with the creation of databases, you know. And, can you let me know who is interested in that? You know, really interested in kidney disease and we need to find somebody who’s got a, who’s got an interest or experience of this particular service or that particular service. And you end up, you know, one person trying to keep a database administered and up to date and all that, which is seems a terribly inefficient way of involving people.

So having an online platform in which people are in charge of their own profile is really helpful because if they’ve got treatment coming up or their care of somebody who is going through a tough time, [telephone feedback] they can just suspend all communication. So they don’t get emails when, you know, things, notification emails, so alerts, when anything is going on that they might be potentially interested in, and so they don’t feel guilty if they ignore emails – they can just turn them off and turn them back on again when life has become a bit more manageable for them. So that was a really important part of moving from the sort of database mentality to one in which people can actually choose and respond to invitations to become involved, rather than a consultant or clinician or some, a researcher saying, “Ooh I know somebody,” and it just opens participation up to a much wider group of people.

You know, I think there’s so many instances that I’ve seen reported or I’ve attended conferences where you have, you have patients and carers being involved in data collection and data analysis and the insight that that is yielded. The richness it’s brought to the project, the, you know, fantastic work creative work that individual researchers have been able to facilitate patients and carers to take part in. I think, you know, that’s fantastic but I don’t think that’s PPI. I think that is something else and I think that’s where the conceptual fuzziness is a problem. I can’t probably articulate it well enough to explain very clearly about where the line is between, you know, patient-led, user-led research and PPI. I know that, you know, it used to be user-led research was part of the spectrum, if you like, of PPI. I don’t think that’s right, I don’t think its PPI. PPI is about involvement and engagement.

I think that, you know, especially with, in, in sensitive research areas or where you’re looking at very specific communities like, say the deaf community why wouldn’t you use deaf researchers to be collecting data and be involved in the analysis? You know, people who are working in the margins of society say sex workers you know, how helpful would it be to work with sex workers, develop their skills and involve them in data collection and data analysis. I think that would bring incredible richness. I’m just not sure that those are involvement activities they are methodological issues around who is best placed. So you might have PPI to help you identify that a particular project would probably benefit from researchers who have particular backgrounds who come with particular experience that is shared with the targets, the target sample if you like, the target group. But it’s a methodological issue, it’s not an issue of public engagement, public involvement.

So I think that needs to be made possible for people to have some sort of voice. But it doesn’t replace face to face contact and by being cheaper and more efficient, what it should do is free up some resources to reach people, reach out to people who aren’t necessarily comfortable or able to participate virtually in our activities that we set up. So there is a place for community based meetings which have a very clear purpose, and, you know, those might be focus groups or there might be groups that are already existing that we, if you like, tap into for a particular purpose. So there’re loads of groups going on out there for mothers and toddlers, mothers and babies so what a brilliant opportunity for a researcher to go and talk to that group, you know, for ten minutes at the end or the beginning of their meetings and say, “That’s what we’ve been doing, this is what we found how does that sound to you? What do you think about it?” It’s not, you could be cynical and say, “Oh it’s you know, it’s like, it’s no more than market research.”

On the other hand I think reflections from people outside academia and outside health services be really helpful in framing messages in such a way that, that they have more impact than in a way that we traditionally present our work. So I think that would be really helpful. And who knows, one or two people might become interested enough to join the platform and become part of more formal participation and involvement groups. It just develops the communities capacity to understand and respond to the importance of health research and health services – you know, maybe value them more, value their health and value preventative measures more. Because that’s, you know, prevention is a really difficult concept for a lot of people, not just minority ethnic groups, where there might be a much more limited history of prevention in health promotion. But, you know, lay understandings of health, you know, lagged behind a little of the scientific knowledge about what can be done to improve health and prevent illness; and promote well-being really. And I think that’s what we’re after, helping people to thrive in their communities and their lives where they’re comfortable.

So there was very little fine grained or nuanced understanding about the relationship between, between food, beliefs about food, beliefs about illness causation, and those sort of things and the actual practices of feeding a family which happens to be in the south Asian community, a mainly female activity. But I was very much aware that the traditional or; well the interview based logic of I ask you a question, you answer me in return. It didn’t necessarily work, wasn’t necessarily culturally sensitive to that particular group and so I was trying to think about a way in which I could collect fine grained and nuanced data about practices around food preparation and beliefs and attitudes towards those in a way that didn’t involve this sort of question/answer type interview scenario which is ubiquitous in qualitative research, as any health related qualitative research.

And so my PPI, if you like, was talking to south Asian women and in what ways they would be comfortable to share that with a white researcher. And I had recently met a local artist who lived in [place name] and whose parents had both died of the complications of Type 2 diabetes who was doing a Masters into the relationship between art and health and how art can be used for health. And we teamed up and developed a method that was based on her and other women’s understanding about, you know, a helpful way of collecting data. And even though I didn’t call it PPI, I called it a community based project, because I didn’t access anybody formally through NHS because that was another way that people felt excluded because they weren’t necessarily comfortable to be recruited into a formal research project. They wanted to do something that was informal, that was relaxed, that was a women only environment in which they could laugh and share with each other their own experiences and in which the interview became a social, social occasion.

As a researcher I relinquished a lot of control and the data I ended up with was terribly rich, but also terribly heterogeneous and difficult to analyse. But that was my problem, that wasn’t their problem.

Yes, yes and we all bring our assumptions to that which also leads to that lack of conceptual clarity about what it is because there are so many things that PPI is to different people which is why it is important to articulate for each project, for each team what is PPI in our project because it could be because people have a right to be involved in their research – end of; in publicly funded research end of, and we don’t need to justify it, we don’t need to demonstrate impact because it is a human right. I pay my taxes, I’m using services, I should be involved. OK that’s a view, you know, and I think that’s perfectly legitimate. How helpful it is I don’t know. But instrumental views would be around you know, you need to involve those who’ll be most affected by the work and who will have experience of using the services in order to improve or ensure that the quality, the relevance, the rigor whatever, of the scientific endeavour is sound. So, you know, that’s a definition, that’s I think, is used by the NIHR and INVOLVE. [Telephone feedback] It’s about quality relevance, utility, best value for money all those sorts of arguments. There’s the democratic argument, the normative argument I’ve already mentioned, and it’s about, you know, the process of the research being overseen, being shaped by the end user if you like or the active citizen in terms of the tax payer.