So it’s important to you to think you’re making a difference? So if there were just a moral case for we should involve patients and public that wouldn’t be enough for you?

No actually it wouldn’t, it wouldn’t. I don’t, I don’t see it in that way at all. I think there is a logical should’ in that if researchers want public funding then they need to actually make a case for what they are doing with the public. And involving people, is a good way of actually uncovering the value that research gives and that there is that should. But this is a big investment that we are making, and so we ought to be contributing something. It’s not just about having quite a nice time.

So that sense, but actually it’s up for us as patients back to leadership when were there to be bloody minded and say, “Could we just, I want to write this down”. Because when I do that, because again it’s why it’s going to be shared enterprise. If the researcher writes down, ‘This is what I want to achieve with patient involvement; this is what I’ve written into my plan and it’s got approval. If they haven’t checked it with us, it’s what they wanted from it, so I did it as a consultation. I had a focus group but actually if we come in to we say, “Do you know what? We could help you all the way through your trial.” So not only is it a better plan, at the end of it that research, an average researcher say, “I was nearly going to give up with that research.” If it had not been from a patient who said, “Actually worse things happen in a factory, brush yourself down, let’s get on with it,” I would have given up. So impact, were getting better, weve got more examples. I think we could be tighter on it, and I just did some work where I had a whole lot of Trusts giving me examples of what they’re doing. And only one of the twenty three had a measure in there. So we need to, we need, as patients, as well as research, need to get better. We need to tie some things. So what we will be doing is saying to people, “Provide us with a report which categorises the impact, not your input. What difference does this make? And tell us the stories of the difference.”

So when something like one particular research, it was designed by very, very clever people, wonderful clinicians. But because they were all hospital based, they planned their recruitment in secondary care in hospital. All those patients don’t see that. If they’d have been involved, they’d have said, “Well, do you know what? Most of the time I didn’t even go to the GP, I went to the local clinic.” That voice to researchers would change that research. So if we look at referrals, right, to hospital, the sense of where the journey and going to hospital and taking part in research. If it means that’s a forty mile round trip, I don’t want to be going for my research on a different day than I went for my treatment. Now, as patients and members of the public we go, that just makes ordinary sense. Not when you’re a researcher or a clinician. They’re looking at their timetables. If our voice is heard at the table we make that different. And you could apply the same sort of things all the way through. So our experience, that primary skill, that, and it is the expertise of our experience. Never forget it; it is why we sit at the table.

And what do you think the benefits of PPI are for research?

Well to take an example suppose we stick in my little field of stroke research. One meeting I went to, room full of clinicians, about a dozen of them, statisticians, clinicians and the theoretical researcher as well, and two lay people were there. And pretty near the start of the meeting we were looking at getting information from users on priorities for stroke research. And I quite innocently asked the question, ‘What does the Stroke Association think of your priorities?’ And the meeting went silent, and it was clear straight away that they hadn’t even heard of the Stroke Association. This is a stroke research group who’d not heard of the Stroke Association. I wasn’t terribly impressed with that [laughs] lack of knowledge on their part. However, they very quickly remedied that and they have now got, the Stroke Association, a representative on their steering group. So some researchers, I think, need to get out and live in the real world. You know, what are the voluntary groups, what are the carer’s associations which are relevant to this research? It’s no good just going down some wonderfully enthusiastic path as a researcher which may or may not have an impact on the real world. Far better to say, well I would find it more satisfying to be able to say at the end of it, This research had an impact on hospital practise or what GPs do. To me that is such a valuable output from research that it’s well worth taking a little time at the start to get lay input.

I think, you know, we have a part to play in that in every part of the research cycle but just in even framing a research question is it of value to ask that question or does somebody just need to be able to write it up? And even tweaking how a question is asked can make a difference to people wanting to be involved and I think you want people to be involved and be part of the trial or study or whatever it’s looking at so that theres a benefit at the end.

For example one project I’ve come across here is a project that’s about bloodstream infections and it’s a very scientific project, well it’s not one project, it’s a whole bunch of things but, but actually they’ve had. and involvement isn’t their culture but they’ve had some really helpful input about recruitment because most of the people they want to recruit into this trial are in intensive care and how they manage the recruitment process , so actually I think what they’ve decided is that, and their advisors felt it was completely OK, for example, to just put everyone in the study who’s relevant and then they then, you know, later, when the person is slightly more recovered, they go through, you know, they ask people.

Now that was, you know, that’s go through ethics but that process they discussed the ins and outs of that, that was really helpful. So, you know, I think, you know, clearly and obviously there are lots of things that as service users and patients, you know, you, you know, there are scientific and technical issues

but, you know, we don’t know how to do that but if you’re going to be asking people to do things or asking people to lie in scanners for forty five minutes or whatever it is, actually you need to ask somebody is that, can somebody do it for that long, can they stay still for long enough for you to do youryou know so there are all sorts of ways I think.

I think I still see some where they think it is still about checking the patient information and not thinking about acceptability of outcomes. And theres that wonderful example that I’m sure you must have read about, but where some researchers I think it’s something to do with rheumatism and it was a clinical treatment. And they were looking at the outcomes that they should be measuring and they were looking at it very much in terms of functionality. You know, could you use your hands better?’, that sort of thing afterwards. And they took it to a group of patients with that condition, and the patients said, “Theres one question you’re not asking.” And they said, “What’s that?” And they said, “Does it hurt less?” because the pain was the very worst thing for the patients. But, for the researchers, they just wanted to make them better in the sense of functionality, and hadn’t thought about the pain. So I think once you realise about the importance of your research outcomes and making sure that what you’re measuring and what you’re wanting to find out is actually relevant to the patient group. And you have to be doing that very early, don’t you, in the research process? You can’t have that as a, a bolt on extra at the very last minute because it’s always going to be fundamental to your whole design strategy, isn’t it, yeah?

I’ve only limited experience at this stage, but listening to some of the members of the group, they have made an impact. One of the members of the lay group produced a video that was, that has been used to help people understand the lay members participation. Theres been papers written on how the a potential study was pulled because the lay members couldn’t see any benefit to the Stroke Community in conducting this research and felt that it would be a waste of time and money to carry it out and the researcher was honest enough to admit that [2 sec pause] that the research which he thought had got merit, was seen by the Stroke Community not to have had the merit that he had thought, and he has written a paper explaining this.

And I should think that this is really important, that public money is not wasted on research projects which may not have the desired benefit for the person who has experienced a stroke.

But the beauty is, I think now, is that professionals expect us to be there, they know were there, they understand the needs, and wishes of the lay community and I think that their input to research meetings has changed as a result of our presence. Sometimes, even if were just there as a listener, not as an active contributor, but the professionals know that we are there, and they try to think from our perspective as well. And that’s made a massive difference, and you can see that, you can see that there have been big changes to research portfolios across the cancer world as a result of the fact that patients are in there, asking the question and saying, you know, this is what we think should be researched and changes have been made. I think I’ve noticed particularly changes in, in the world of prevention, early detection, raising awareness of cancer issues, and then at the other end of the journey, about end of life care issues, progression, survival and mortality and end of life care problems which need to be solved as well.

I think sometimes one of the biggest is that we can ask the elephant in the room question. We can say, “Well why not? Why can’t you do this? Well why can’t you do it that way?” Were not employed, we don’t have to worry about the hierarchy in our jobs. And we don’t have to, we can challenge from a purely interested point of view, not worrying about, you know, the bosses or the NHS or anything really. We do have to be aware and I think patients are very aware of cost of treatment and cost of things. And I think were not saying that you should have any drug at any price, or any treatment at any price I think we do have to have a system, but I think we should be involved in those decisions and I think we can actually make a very valuable contribution in that sense. I think we can always, the value is maintaining the patient perspective throughout, and finding ways that overcome unnecessary barriers, that we can find ways of making something more acceptable to patients, explaining it better to patients, and things like insisting on feedback of results in some way.

The goals for PPI are to recognise that patients have a valid input into research; they have a valid voice to improve health services, you know that means that patient groups in hospitals, in doctors surgeries with the clinical commissioning groups all of that PPI work which is starting to happen could make changes that are significant if you get the right people involved. It’s the same as any other organisation if you have the right people in an organisation, the right managers, the right workforce you do a good job. If you get the right PPI representatives in place you will see improvements and if they’re treated with respect and with dignity and they’re given correct feedback for their time they will work hard and they will deliver what everybody wants which is improvement.

OK and

Sounds like a script, it’s not.

And you’ve been involved in PPI and research for around eighteen months or so, and how has your sort of, your experience of the first eighteen months been?

It’s certainly been a steep learning curve. It has thrown up a number of points around issues of what constitutes good practice in this area and how some people involve patients very well and other people have not really taken the time to think through what participating could mean for this patient. It needs to be fleshed out a bit more fully than, Well they said they wanted to so let’s get on with it. So certainly everybody tends to find it more satisfactory if people are involved in the conversation from the beginning. I’ve been involved in one or two things where the patient has been brought in quite well down the organisation or route and then where they raise issues, which are acknowledged as valid, but which run contrary to the sort of direction in which things are moving at present. It’s just too difficult in terms of time spent and finances spent and where everybody’s head space is, to turn things around to do it better. So involving people at the beginning is really important and making the effort to foster the communication, the team work, and the attention to detail so that you move forward as a close knit team. Everybody then finds it very exhilarating and my experience is not only do the individuals find this rewarding but I’ve seen researchers get really very excited about how real the whole thing seems as opposed to sort of theoretical and academic. So they can start to see how the research they’re doing is really going to benefit people so it gives a sort of extra sort of brilliance to it. It makes it more exciting and engaging.

I think that’s a very big question because it can’t just be anecdotal: Oh it was really good because we had PPI input. And I think that’s the way forward in PPI is finding a way of, of measuring that as being real. Now in the short time that the forum’s been going, we have done it by asking researchers to feedback in what they felt the impact or the input was. But I know that there needs to be a lot of more in inverted commas research done in how you measure that. I am very convinced of the impact but, but there has to be some tangible way of presenting that and the only thing that we could do in our first year report was simply quote what researchers said. But that’s not probably a very scientific measurement but that is an area that is, are, I’m not sure how you measure the impact. I mean theres all these conversion scales and all of those but there has to be some way because otherwise you are anecdotal and saying, “Oh yeah it makes a difference,” that is, so if you can tell me the answer I’d be very pleased.

Yes I think so, yes and maybe it is, maybe it is a scale but it’s a recognised scale and that, you know, if you’ve had PPI input at some area of your research cycle that they refer, return it back to the PPI lead and say, you know, “Score,” theres that I mean, you know. I mean there are many different toolkits about at, at how to work as a PPI but we need to be a universal way of the scoring as such for the impact that gets beyond the anecdotal.

And I think that’s the next big step in PPI that has to be found, how you, how you show that that was a good an impact for good or not good and then you look and say, “Well why was it not so good in that area? What was the perception that made it like that?” But you can’t keep going round saying, “We know this is good.”

In a research without any evidence yes because we don’t live in that sort of world.

But I’m not sure how you actually track that down.

So what are your thoughts about measuring impact?

I think there are issues around it. I think there is a problem about pulling out an element of a project. If public involvement is embedded within a research project it’s quite difficult then to pull it out and say what difference has this bit made. And, for instance, trying to do that for statistics or for, it doesn’t, that doesn’t quite, sort of, gel very well. And if, for instance, you’re holding workshops where people are talking with each other, including researchers and, and service users, it’s quite difficult to then pull apart whose contribution made which difference. So those things make it quite complicated. So I think simplistic tools for measuring impact can be quite damaging, because they’re not likely to notice it. But that said, I don’t think I’d want to be involved in research if I wasn’t making some kind of difference by doing it. So, yes, I want there to be an impact and it would be good to be able to start to uncover some of the impacts that user involvement makes, but, as I say, not in a very simplistic way. Some of the proposals for tools that I’ve seen have been just far too simplistic and haven’t actually understood what complex relationships there are in research processes, and that’s something that needs to be taken into account in it.

So what kind of tools do you think are better for trying to capture impact? Are we talking about narrative here, case studies?

I think they’ve got to be part of it and I think they can start to uncover what impact is intended and what impact is not intended as well, which is, I think, something that’s quite important in these very complex relationships. So then people can start to think about actually what impact is it they want to have and how perhaps the best ways of moving that forward? Because people are looking for different things in involvement and researchers are looking for different things, and the people who are involved are looking for different things and the idea is to try and start matching some of that up so that it works better and that’s I think, the purpose of trying to measure impact.

Some changes subtle and some more profound I think. I think, I think the profound changes are that now lay people are accepted into that world without question and people the clinicians and the professionals in the cancer world attend meetings and they now expect there to be a patient representative in those meetings.

The more subtle and the more difficult things to tease out of that involvement is to try to work out exactly what the impact of patients and carers has been on that world. And it’s a question were always asked. I spend a lot of time now visiting research conferences and research meetings and, and talking to professionals and they immediately start to ask, you know, what difference have you made, what is your impact there, and that can be, that can be quite difficult to see really. Because were, I guess we are just one now of a group of multi-disciplinary people working on projects and studies, and to actually say which, which change you’ve been responsible for, is not an easy thing to do.

Is there any way of knowing how much of an impact it has?

No not really. I think, I think were just a little cog in, with, it’s just that were moving in the right direction. If theres enough of us moving in the right direction, just putting a word in. You don’t, we never know you might meet somebody who might have been going down the road where they were going to top themselves, you know, commit suicide because they can’t see a way out. And just one little word and saying, “Oh have you thought of joining this group?” You might have saved someones life, but you’ll never know whether you saved someones life by saying that to them. But it’s just helping people and it’s not helping individuals.

Can you tell me a little bit about what you think the impact of PPI is, and whether or not we can measure it, or can we understand it in a greater way?

Mm well actually I’m involved in a, theres a currently a bid out to measure the impact of PPI as [name] at [university name] is putting this bid together. And it’s out for consultation or whatever, at the moment it, it’s. And that is actually that, to find tools that measure the impact of PPI because the only way to get it more embedded is to actually be able to point to something that shows. Because at the moment it’s dismissed as anecdotal evidence and I don’t know why anecdotal evidence doesn’t count, you know. It’s because a lot of the tools that are used in research, clinical trials in particular, are validating measures that other people have done, you know, validating measures and a lot of them don’t make a lot of sense. But they, because they’re validated they’re used, and you get ten different measures or something and when, in fact, a bit of anecdotal evidence would say that, in fact, either you need to draw a new tool or, you know, why not ask people what they think and then take it from there?

And how do you feel about not getting feedback on the comments that you’ve given or the suggestions you’ve made to researchers?

I wouldn’t say that it annoys me massively but, I do recognise it from my own research that that is a very, very important part of the process that isn’t happening. And I think, actually, that may well be one of the major parts of the process that keeps people participating’ essentially. Participating because you understand what’s going on is great, and then being encouraged to participate is great, and then being supported in your participation is great. Enjoying the participation; fantastic. But, you need to understand what it is that you’ve done with your participation, you need to know. It’s not patting somebody on the head but, it’s saying “Thank you for what you’ve done, that was really useful, more of the same would be great, and this is what we have changed in light of all the comments we received.” And even [if] it’s just generalised, even if it’s only something that’s been sent round as ‘We have received lots of comments, no names mentioned, these were the comments we received and this is what has changed. I think that is hugely important, yeah.

Do you get feedback or do you get any indication of whether they have used your feedback and acted on it, and what has changed as a result of it?

Well only in the sense that I get the document, I look at it, I flag up, typically I would say three to four specific points to address. I usually try and give an overview as to whether I think the project is, you know, is valuable or interesting or, all those sort of things. So theres a broad sense in how’s this project been received, so I tend to give that first and then I say these things, I think, could need , usually fleshing out further, you know I may say things like , “It’s not clear to me how the psychologist on your team is to be used, are they going to be used to ensure people are able to give consent or to choose appropriate screening tools for their reaction to something?” or you know, so, so that sort of thing, or issues particularly, as I said, issues around if you’re going to require the patients to go through all these tests, I think you’re going trouble recruiting them. Or, this is going to be, you know, if it’s taking medication and coming weekly for blood tests and, you know, having spinal fluid taken and, you know, these sorts of things. I say, “I think you’re going to have a significant fall out rate because this is very difficult to live with if you’re also dealing with recovery say from a, you know, from an illness.” But the level of feedback I get usually says, you know, this is really useful, were going to incorporate it all or, you know, this is useful and well explain further here or yes I see your concerns but actually I’m restricted to a hundred and fifty words and I’ve already bottled it into a small a space as possible so it’s not possible for me to develop it, or yes so people tend to give me an idea of how they’re going to use my information, which of course is important because that informs how I react to the next set of reviewing that I do.

But I also want some of, so I want qualitative measurements. I want people to be actually I know some of these, I want them to say I know the language changed and I know that’s qualitative but we can say the language changed. We can say, “No actually we now know this research, we think, we may not be able to, but this research are accrued to time and target better than one I did before.” Now we might not be able to say that’s to the PPI, but wouldn’t it be great if we did a trial, weve got it on the books, were about to go and we actually gave two information leaflets. We did the same trial with the same ethics, but when we said to the ethics committee, “Look wed like to give them this patient information leaflet and wed like to test it, because the trial’s the same, the research is fundamentally exactly the same, but wed like to test out this information sheet, this trial protocol with this lay summary and this one that didn’t have the involvement, that actually we could measure whether it accrued to time or target.” We could bring together the researchers and say, “This is the way to explain the trial, you do your way, well do it this way.” So actually we could do some quantitative stuff that could really do.

Oh it’s essential, it is. It’s , it is, nowadays it is and to do good research and don’t get me wrong, theres lots of basic science work going on that actually it’s hard to even, so I think that research is also really important. But when you come to actual research on patients I think it’s really important that you have patients helping you to do that well and I think you’re going to get better recruitment because the research will be better designed; it’ll have better relevance to the patient. And there actually is some evidence; there has been some work done on what value there is in adding PPI to research. So I think, and also we can help disseminate the results of the study so by linking the charities and by making relationships with charities, then the results are just disseminated much better. People are much more research aware and I can’t see anything other than positive benefits of PPI.

I think what they showed is that there needs to be lots more work to be done on actually assessing the value of PPI. But there, what it has shown is that the study design is more relevant to the research and also, I believe, that the information sheets are better written and better understood from a lay perspective if you involve patients with the writing of the lay reviews.

And how do you think we can measure the impact that patient and public involvement has on research?

Ha ha, yes, the ultimate question. Weve struggled with that for twelve years and we still struggle with it [laughs]. I think the only way you’re ever going to be able to do this is subjectively. You’re going to have to ask investigators, particularly chief investigators, principal investigators, the ones who actually put studies together in detail, what their perception of the value is and hopefully they will do more than give the nominally appropriate answer.

Is it more about quality rather than quantity in terms of impact?

Oh absolutely. It has to be because it, you need to measure things because of the old adage that what gets measured gets done. And if you don’t measure things in some way or other then you have no idea whether you’re doing well or doing badly. But you need to be very, very careful what you measure otherwise you start setting metrics which distort the provision of the service, and in an ideal world you want an element of coupling of the career success of the service provider at a personal level to the quality of the service which they provide to the service user. You know if you, I don’t know, suppose you paid five pounds for every patient who had a flu jab, you could be pretty sure that lots of people would get flu jabs because that’s a nice mechanical thing which you can set up and which you can manage. But if you take that the more complicated things, you might want to provide a more expensive treatment on the grounds that it would be a better outcome for the patient and then you wouldn’t see that patient again. So it’s not just a question of through-putting, how many patients can you get through your door. It’s a very, very difficult question, but I think there should be some kind of measurement. If you ask me how, I couldn’t answer that question at the moment.

That’s the other thing the use of the academic language, I think, is also linked to this fact that if you want to make an impact with health research, it needs to be published, preferably in The Lancet. Whereas I tend to take the view that, as a patient, if you want to make an impact with a health research, it actually needs to change clinical practice in our hospitals for the benefit of patients and I really don’t care whether theres four, eight or sixteen pages in The Lancet. I even don’t care whether it’s in academic language or plain English. If you’ve actually found something that promises a better treatment for patients in hospitals, then the place for it to make an impact is for patients in the hospitals, not in the pages of a journal that most of the general public would never touch with a barge pole.