Sarah A

Age at interview: 32

Brief Outline:

In her job, Sarah teaches and conducts health research. She has been involving patients and members of the public for about two and a half years.

Background:

Sarah is an academic research fellow. Ethnic background: White British.

More about me...

Sarah’s background is in psychology. In her current role as a research fellow, she’s been working on trials and interviewing patients. She began involving people in her research when she was applying for her fellowship, explaining that for her at this stage it was a strategic move. A colleague put her in touch with a patient who had an idea for some research. They submitted a funding application together, which was successful. Having done this, Sarah was invited to speak at training events and has since become involved in delivering training about involvement.
 
The reasons Sarah continued to involve people in her research aren’t the same as why she started doing it. She described herself as more interested in and committed to it, and said she had lots of questions about it that should be answered. What is involvement? How does it improve research? How can it be made consistent and standardised?
 
Whilst Sarah said researchers are obliged to do it because research is funded using taxpayers’ money, she recognised there were factors that made this difficult, especially current attitudes to involvement. She suggested that funders don’t adequately resource involvement, so it doesn’t stand the best chance of making a difference to research. Equally, responsibility for it is usually given to the most junior, and least experienced, member of the research team, and Sarah would like to see more senior academic staff engaging with it. She also said that universities need to be better equipped to deal with patients and members of the public, particularly when it comes to the time it usually takes for expenses to be reimbursed.     
 
As Sarah sees the research she conducts as a collaborative effort with patients and members of the public, she thinks all members of the project team should have an equal say in it. Whilst she said she believes in the value of involvement and that it can make a difference, she recognised there are potential problems with it and is frustrated that these are often not reported; only the benefits of involvement tend to be written about, which will not convince sceptical researchers.
 
Sarah believes most researchers are motivated to make a difference for patients and would encourage patients not to collude with those who may be see involvement as a tokenistic exercise. She thinks more research is needed to build up the evidence base for involvement and that researchers shouldn’t be afraid to only report the positive impacts they’ve found. She would like to see more accountability and transparency in the reporting of involvement.  

Involvement is primarily about social democracy and transparency for Sarah A.

But you’ve referred a couple of times to having this obligation to do PPI, we have this obligation. Where does the obligation come from?

So a basic one is we're tax payer funded. So we are a public body doing things on behalf of the public; using public money. And so I think in a, sort of, a social democratic sense, the public should have some access to that, some say in how that’s done. That is probably the primary one for me and I think as well we, I always think, you know, when you're writing your grant applications or something and you do your bit about how incredibly important this topic is to patients and how, if you do this project, patients will benefit and it will make patients’ lives better and patients’ are going to love this so much. And I think well, if you can't, then speak to some patients and explain to them the reason it's important and have them at least agree with that or, you know, offer their opinion, does that mean you're lying in that grant application? I suppose the alternative view is that you know better than those patients do - what they want. And I think possibly some researchers do think that. 

But for me, then it would come back again to kind of transparency and things. I think the obligation is to at least try to communicate these things to patients. They give them the opportunity to become involved. As I say, it's their money, it's their healthcare and if we're going to say that we do research for patient benefit I think a patient should be able to tell you what that benefit is, or agree with you that it's beneficial, I think. So I suppose that’s what I think.

The assumption that researchers are ‘robotic, unfeeling people’ unless they have patient involvement can feel a bit insulting.

And there are people who have negative experiences and I think that can, you know, that goes back to I think the more basic thing of, it can be scary because you think, 'Am I just going to sit here and get told off by this group of patients who think that what I'm doing is rubbish?’ And, you know, ‘I've been, I've been working on this for nine years now and I don’t want to be told that I don’t understand things.' And, you know. And that I think is sometimes dangerous, I think sometimes as a kind of an implicit and sometimes actually explicit kind of storyline in this idea that we need PPI because actually we're all these kind of you know, robotic, unfeeling people who don’t understand what patients go through. And I think, I wonder sometimes if that’s a little bit of the friction as well, there's this kind of so what, you know, I've spoken to hundreds of patients; I spend all my time, you know, exploring this and exploring the impact on them, and you're telling me that I don’t know anything about it. And that, you know, I wonder if that’s, but it's almost a bit of a professional insult and a bit of a personal insult I think as well. So yeah [laughs]. 

Sarah A feels ‘passionate’ about involvement, but thinks some of her colleagues only view it as something fashionable that’s useful for her CV.

I think, I feel like because it's now something that I sort of, I would say I feel passionately about it and yet, not because I think it does automatically lead to better research but, because I think it's this issue of transparency and the issue of where one is meant to be for the public so they should be involved and I do feel the more I've got involved in it I feel like it's not being given a fair crack of the whip actually so, partly I think like well you know, before we debunk it as we claim we will, then we need to at least do it properly.  It's a hard one. As I said I'm lucky in that being on a Fellowship I have some freedom to kind of pursue things and it's still, it's fashionable enough that it's looked at well, OK carry on with it because it looks good on your CV you know – people like to see that; funders like to see that. I don’t think there is though the kind of support to do as much with it as I would like and to do sort of more thorough stuff with it. 

Getting people involved is one thing, but finding ways – and funding - to keep them engaged can be a challenge.

And one of the things I think we're trying to do now is branch out more and get, you know, fresh blood so to speak and particularly try to get people who perhaps think PPI isn’t for them. 

But it is early days in doing that and I think, personally, I think being able to offer the support at the start is important because I think on other projects specific groups where I set up sort of PPI meetings or things, it has been quite successful in sort of reaching.  So in one city we were trying specifically to reach out to black and minority ethnic groups and we, you know, we managed to do that quite successfully. I think we got sort of five members who came in who were from different, specific groups.  But I wonder if then, the fact that we weren’t able to offer them a clear path in and so to say, "OK now if you want to stick with this, which we'd love you to do, you know, this is what we can offer you; this is how to think about whether you want training."  We talk a lot about the idea of like a buddy system – getting people buddied up with current members so they’ve got someone to talk to.  You know, for me, I think that’s where the gaps in, I think we'd get people who are interested and who bring, you know, these different perspectives that we do need. But then we haven’t got a way of holding onto them. 

And I think that is partly a problem with, you know, funding and things because if you're funded for specific projects; so you'll have your money to do your three steering group meetings with this group. There isn’t a pot of money there that says, "And this is for the coffee and the chats later on, to talk to them about whether they want to continue." I mean [involvement group name] itself, one of the big struggles still is funding… 

…For [involvement group name], you know, it's, there isn’t a pot of funding for sustainability for that group, despite its success. You know, it's still essentially having to, on a six monthly basis it seems, find a pot of money from different places and as I say, I think there is an obligation then from funders. I think, you know, if someone like the NIHR is going to say, "We want you to have PPI input at all stages before you get grants after the grants have finished," then there needs to be money there for it. 

A carer inspired Sarah A’s whole project, made recruitment easier, and improved dissemination. But she feels there isn’t enough academic career recognition of good involvement work.

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

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

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

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

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

There isn’t enough evidence for involvement, and mostly its ‘rose-tinted case studies’. We need better reporting of involvement, but also more clarity on what ‘impact’ means.

I don’t think there is sufficient evidence. I think we're still grappling with what evidence we want to look at. You know, so is it that we think that if there's better PPI it should improve your recruitment rates? I think there was an MHRN [mental health research network] paper recently which said that it did. You know, is it that you have a more insightful conclusion? You know, what does ‘insightful’ mean? So I think we're kind of having to grapple with that. I think, I think as long as that line gets trotted out of, you know, ‘PPI makes research better’ and I think until we nail down what better means for both researchers and for patients and members of the public I think it’s, you know, it's a tough situation. I think there's also there's a, there's kind of a catch twenty-two I guess in that there's a thing that no-one really measures or reports PPI as it goes along, it just kind of happens. So if you're not reporting it how can you ever demonstrate the impact it has? So that’s kind of a methodological issue actually I think. I think that’s something that we need to start and I know there's things like the GRIPP checklist and things like that and to try and encourage people to start reporting PPI, and I think once we do that, you know, at least then you'd be able to say, "Well so, you know, this number of studies did this much PPI, did this type of PPI" and then you can choose an outcome and can compare them on. But at the moment we can't even do that because I don’t think PPI gets reported. 

I think most of the stuff about impact that I see is kind of case studies talking about, "Oh we did this," and personally I think they're often very kind of rose-tinted case studies and they're kind of like, "Well it was great because we did PPI, isn’t that nice of us?" kind of thing. And I think, I think we do need to, you know, assess its impact, assess what happened with PPI, how did it impact the research if it did? I think there should be some way for the PPI members involved to say what they think the impact was, and I think it's tough because I think actually then we’d just start getting examples of where it didn’t have an impact or where it had a negative impact either on the researchers or on the people involved. Personally I don’t think that would be a reason not then to do it. What sold me I think, as I said before, is this thing that I think we should do it. For me it's, I think it's about transparency and accountability in some ways and for me the impact is kind of an unanswered question. Yeah I think it's, I think a lot more needs to be done, I think sort of methodologically and in terms of encouraging or enforcing proper reporting about it, and I think until that happens I'm not sure what we'll start to see. But I know someone I'd spoken to the other day who used the term, you know, "Oh well if we start really evaluating this it'll be de-bunked within a few years." The idea that we’ll show that it's not, it's not making better research. But as I say that kind of leads onto this question of it depends what you mean by better yeah, so it's complicated.

We need better evidence, but researchers don’t feel able to voice any negative views or bad experiences of involvement. We need better evidence, but researchers don’t feel able to voice any negative views or bad experiences of involvement.

I suppose I would say I understand why there is scepticism because I don’t believe there is an evidence base for it. However, I don’t think there has been genuine effort to develop an evidence base for it and I would also point out that I think, you know, we do a lot of things as part of academic culture that there isn’t an evidence base for – you know there's not an evidence base for going to journal clubs but we do it because it's part of the research, so in that sense I think well why can't PPI just be part of research as well. But I suppose I would also say I think sometimes people who've had negative experiences where it was too demanding and they felt really put upon or if they’ve had a negative experience with a PPI partner who’s, you know, shouted them down or made them feel bad or something like that and I think they feel like I'm not allowed to say that because the only stuff that gets out there is these rose tinted case studies about how lovely PPI is and how happy it makes everyone. 

And I suppose I'd say to them that I think the reason for us doing work in PPI recognise that is has pros and cons and that it is very complicated and that is something that we want to start to capture and we want to start to evaluate and think about and so I wouldn’t use those experiences as kind of, 'Oh I'm done with PPI because I don’t buy into this; isn’t it all lovely framework?' I'd say, "No you should stick with it but think about well how can that get evaluated and captured; how does this feed into lessons about the kind of support that actually we need to deliver genuine PPI?" Because I think it's kind of stuck at the moment from people who just think it's rubbish and people who outwardly at least think it's the best thing since sliced bread and actually I think the reality is in the middle; I think actually that’s where most PPI research is, is somewhere in the middle and I think that’s where the progress is going to be made actually. Kind of the how you capture that complexity and start pulling it apart and I think there's potential there to do really interesting stuff yeah [laughs].

Sarah A trains other researchers in PPI but never had formal training herself. Training needs to be about managing relationships as well as basic practical advice.

[Laughs] this is where I show myself up because I've never had any training; I now deliver training to people on PPI which is this issue of kind of because I started doing it people then look at you as if you can do it, so you try and catch up really quickly. I think training is an issue. The difficulty there is that I think so skills based training I haven’t come across anything that would do that you know, and that is very rare to see for researchers anyway I think. But then you think, you know, you can go to training to train you into doing interviews and how to react the right ways and how not to take things over and stuff so maybe there should be similar training available on you know helping to chair a PPI group meeting or working one-on-one with PPI members just to make you more sensitive I guess to what needs to be done. In my experience their most training is kind of, it'll be one day or a one afternoon package on the, 'What PPI is and isn’t,' i.e. it's not just qualitative research. Something about how you recruit PPI members; something about thinking about issues of cost – so it would be very kind of pragmatic on, you know, getting people in the door basically. But then beyond that I haven’t come across anything no, no.

PPI is about building partnerships over time, and supporting and training people to get involved. Wanting everyone to be completely ‘naïve’ is unrealistic and devaluing.

Do you think that there needs to be training, support, things like that for patient and public involvement?

I do. But this again, I know this is an issue, this is a potential contentious issue. My, so the kind of debates I've had are people who have this view, for example, that you should have naïve PPI so that the person who is coming is a naïve member of the public who doesn’t have, kind of, that research hat on or those research blinkers or whatever you're kind of assuming research does to people, and who is just giving a, I guess a pure untainted view of what it's like to be the member of the public who suddenly gets the letter about the research trial or who suddenly hears about this research finding and they can give that, just that – that sort of untainted view of just what it's like to experience that. And I understand that and I think that’s valuable. But because I would, I think PPI should be more about a continued involvement and partnership; I think that does need then, training and support. I don’t think you can ask someone to walk off the street and, as I said, comment on an analysis plan and comment on an ethics application. 

So in that case I think we do have an obligation to offer support to them and to teach them, or to offer them opportunities to train if they want them. As I said, it goes back again of course; you know, people would be different I think; people, some people come on and they want to just give their opinion and other people, I think, really want to get more involved. And I personally think that there is a lot of, a lot to gain from having, you know, what get called the ‘expert PPI members’. I don’t like this idea that once you become more expert in PPI suddenly you lose that interest or that passion. So my PPI partner, my collaborator I talked about, her issues, her passion is about carers and things affecting carers, and she's incredibly experienced and knowledgeable about PPI, far more than I am. 

For example, she has huge amounts of experience in doing it and the idea that that taints her, her passion or the sort of, the raw experience of saying, "But this is what it feels like to be that person." I don’t think that’s true at all and I think, I personally think, that kind of devalues the contribution that those people can make who are these amazing people who have this passion, who want to share their experiential knowledge with us, but who also have experience and skills that mean they can do that. I think they're amazing, you know, and it frustrates me sometimes when I see this argument, "well, we'd better not train them because then they’ll, you know, they’ll be too much like us," or something. I don’t know, I find that, I find that strange. But as I said, that’s, I know it's an issue of debate and I'm probably being unfair to people who have the alternate view but it's my interview so I can [laughs].

Sometimes researchers have felt forced into doing PPI, with little belief in its value for their projects and little support to do it well.

If I had to stereotype it I'd say the, sort of the younger people in the department, and PhD students particularly I think, tend to be very positive about it, and I don’t know if that’s just because they're sort of more open to they want to talk to patients, they want to get these different perspectives. I think, I think everyone now has bought into the idea that they have to do it and for a while I think actually they resisted.

I think there were people going, "But you can't do PPI on my quantitative survey," or, "You can't do PPI on a systematic review, well it's physically impossible," and now I think you know they’ve realised actually that'll get their funding application balanced, that will get them a red, you know, cross from the funder and that kind of thing. But in some ways maybe that’s had a negative implication you know, people think well, 'Well I was forced to do it; I never bought into it really, but it's something that you have to do.' I think… I think there's, I think there's scepticism ; you know I think as researchers you know your job is to critique stuff and say, "Well where's the evidence base?" and so when you say something like, "PPI makes better research," they say, "Well where's the evidence base?" So I don’t think the evidence base is there yet. 

So I think it's natural in some ways and I do think there's a kind of a cultural issue. I think it's, I think if, you know, you’ve learned to do research and that involves treating and relating to patients and participants in a specific way and how you communicate with them and what you sort of take from that encounter and what you do with it and your perceptions of what our role is which, you know, to some people it's perhaps, it comes back to this idea, "Well what if you know a lot of patients don’t know what's best for them," and that’s where, you know, research can be very important because it takes data or it takes opinions and it can give up all of you and I think for them they look at it and it, they are not convinced by the idea that getting, you know, some nice lady to come along and say and critique your study; I think they think well what is that going to do . Yeah, and as I say, I think that cultural difference in, so how you then relate to people and that’s really, I think that’s really hard. 

You know I think PPI requires a lot of personal skills and I would say, I don’t know if I have all the personal skills [laughs] that I think are required. And that’s kind of the problem, you just get, you can end up just thrown into it; you're expected to, you know, perhaps talk to people who are very upset about certain treatment or something. And then you’ve got to tell them about your research, and you’ve got to communicate it in a way that is accessible and even handed. And then you’ve got to be able to draw out people's opinions, and then you’ve got to be able to negotiate with them. And then you’ve got to be able to, you know, it's a lot of, it's asking a lot, I think, of researchers as well. So I think there's scepticism and I think there's sort of a reluctance to kind of, you know, get engaged with something which can be very, very difficult sometimes. 

In Sarah A’s view, having sustained organisational investment over time would make the biggest difference to effective involvement.

I would say we have vastly insufficient resources to do PPI. Like I say I mean we've got, so we've got this excellent group, the [involvement group name] group who have contributed I think a lot in terms they consult for lots of projects; they're there to talk to researchers about their projects; to advise more on kind of the strategy of PPI. They don’t advise just on single projects, they advise about how you do PPI in a project you know. And as I say they are, they struggle to be funded, they don’t have sustained funding which I think is criminal. And I think then there's that issue I said you don’t have funding kind of before and after a project to kind of do a lead in to something and then to support people coming out of it or to sustain that engagement. I think a lot of the time, I think it's getting better but I think a lot of the time that even PPI within a project is not adequately funded because it will be kind of the last thing people think about and they’ll do, you know, they’ll do that OK, "Well we'll put in twenty pound an hour for six people for a couple of meetings," and you know what if those people are consulting via email; what if they're doing tele-conferences; what if you're asking them to go and speak to their friends about research or go to groups or something. 

What if they want to go on a training course, you know where does the money for that come from? So I think in my experience PPI is almost always underfunded and yet it will still sometimes be the bit on a grant that hasn’t had the money spent on it, but that’s usually because people have somehow forgotten to do the PPI which happens surprisingly often. And I mean, so to give an example now is – so that the project that’s started this all with my PPI collaborator that we do the project on carers and now we really want to take that forward and get a bigger amount of funding for it. And I'm lucky in that at the moment, I'm fully funded on a Fellowship and I have a degree of freedom to sort of put effort into work to build future projects. But apart from that there isn’t anything there to kind of sustain that and so you could potentially have what I think is a great project that was PPI you know instigated and led and now kind of where is the support to go forward with that? And that’s, you know, that’s talking about specific research if you think about this issue of training, you know where's the funding to deliver training. 

So the training that I deliver in the Centre we just do that, you know, there isn’t any kind of external money to support that. So no, I think that, for me, is the biggest gap between the fact that every, pretty much every funding body, now has a statement somewhere about how important patient involvement is and how seriously they take it and that does not translate financially, I think, at all really. And I think the more, I think people who, the PPI partners themselves who have been in PPI for a lot longer, I think they start to see that and I think that sends a dreadful message about how this is just nice words rather than something that is backed up with genuine resources. It's, you know, money talks at the end of the day I think not adequately resourcing it I think sends a message that we don’t really believe in it and we don’t really want to give it the best chance that it could have really.

Too often involvement is left to junior staff. Sarah A would like to see more senior investigators actually attending PPI meetings and demonstrating visible commitment.

And you do, I wonder sometimes if that’s why they give it to kind of the younger researchers because it's like, "Oh basically you're a nice young girl aren’t you, you're inoffensive and you're very nice to people so you can go and do the PPI," as if that means you can sit here and run, you know, what is essentially a collaboration event that you can deal with what might be strong personalities or conflicting personalities. You know when I do PPI meetings I'm exhausted after I've done them, it's because you really feel on - you're trying to communicate, you know you're trying to bear in mind all the stuff of being respectful of being collaborative; of not leading people a certain way, of trying to respond to people or trying to get people involved who seem sort of reticent to be involved it's. I think it takes a lot, yeah and that’s yeah [laughs].

You said there that you said you're a nice young girl [R laughs over I]. Is there a gender issue about who gets to be the PPI co-ordinator or who does PPI?

[Laughs] I wouldn’t say I've observed that formally. But in my experience that’s how it tends to get done, you know. I think - yeah you're essentially kind of, which is insulting really both to I think, to the nice young girl and to the patients where it's almost like the kind of the PIs saying essentially it's some kind of coffee morning. Like kind of, "Oh well, you know, you're nice and you can go and chat to them about their kids or something can't you?" So I wouldn’t say formally that there’s a gender issue, I think it's perhaps more of this, it shows a, I think it's perhaps, in some ways, hints at the lack of value that is being put on it that it's essentially almost just an exercise in being nice to members of the public for an hour or rather than, "Do you have the skills to sort of properly engage with this?" and also an issue that I often sort of think about is this, you know, if you're telling this group of people that they're going to impact the study or that their voices are going to be heard and yet it's the most junior member of the team who's hearing and she can't go back, or he, can't go back to their PI [principal investigator] and say, "Well you know now we're going to do this because the PPI group said. So…" 

I personally would always like to see people who have a bit more responsibility and authority for studies actually going to these meetings because I think that would demonstrate to the group that it's. I mean, I've been at a PPI meeting and you see the people I could overhear the PPI members going, "They're all very young aren’t they, they're very young." And you do kind of feel like ‘well are they going to trust that I'm taking this back’. So I think there's an issue of making sure that people with, you know, people with authority to take decisions about the project, are the people who actually go and consult and collaborate with the PPI members rather than it just being, you know, left to the most junior member of the team.

Involvement can be burdensome and wasteful both for participants and researchers. Dealing with hostile or ‘single issue patients’ and lack of senior support can make it hard.

I think for the PPI participant, or the PPI partner, I think it can be burdensome for them and I think there is often a lack of support for what they're expected to do. You know, they're kind of flung in and asked to do things without a lot of help really - both in the technical aspects and also in just, you know, being asked to suddenly go into a room and collaborate with a bunch of professors, and PIs, and statisticians that they’ve never met before. You know, I think, I think that can be a struggle for them and potentially off-putting. 

I know finance is always a big issue; a very sensitive issue about not getting adequate, sort of, compensation, I guess, for the time they spend on things, or the speed with which they get that recognition. There are ownership issues, you know, if they come and they say, "Well this was my idea and then you took it, and made it something that wasn’t my idea but you're saying it was PPI inspired," you know. So I think they're kind of the issues for the PPI members. So there's kind of the burden, the cost, and the level of, I think, how much they feel a genuine collaboration is going on. I think, you know, that thing, that issue of saying, "Oh well you're doing this to tick the box," that comes up a lot, and I think they're rightly, they rightly get very angry about that. 

From a researcher’s point of view I think there's a fear that kind of you'll sit there with these PPI partners and they’ll just tell you what you do is rubbish - which no-one wants to hear [laughs]. I know a lot of people talk about this issue of, the single issue patient. That you're going to have just one person who comes on with an axe to grind and that gets set alight, you know, they're just going to, they're not going to be able to think, sort of, more broadly, or be able to compromise about where research should go. There's burden for the researchers as well. In my experience it's typically, sort of, the more junior researchers who basically get told, "Oh you can do the PPI bit on this project," or told, you know, "Here's the two hundred quid we budgeted for it, go and run a focus group or something." And they, you can get very little support to do that, so, and I think that can be, you know, that’s basically adding to the work you’ve got to do and makes it more intimidating that you're kind of floundering to try and run what actually I think can be very complicated sort of projects, complicated work. It involves a lot of diplomacy and a lot of patience and, you know, if you’ve just been thrown into it by your PI who then says, you know, "Can you write the paragraph on this for the trial report?" those two things don’t match up at all. 

And I think a lot of them do have this question that ‘well is it making things better?’ You know, ‘how is this improving my research?’ How is this, you know – I think they worry that it's a, it is a tick box thing and it's kind of a, that basically, you have to do this now because the NHS and the NIHR tell us we have to do it. So we tick the box and actually it's a waste of money, it's a waste of time, and it's not genuinely going to improve things so I think, I think there's. I think people who want to engage with it, I think it's this issue of burden and anxiety over whether they’ve got the skills to do that, and the support to do that. And then I think on the other side there's people who are quite cynical about it or sort of very sceptical about it, and for them I think it's more, they don’t buy into the idea that they should or need to be doing it. So that’s what I think.

Sarah agrees paying people is an important principle, but wants firmer national guidance on what to pay and how to cost this in grant proposals. Slow payment processes can feel disrespectful.

I think I said at the start, it's one of the most, sort of, sensitive issues, it comes up a lot. I mean in terms of what I think of payment, I know there's a, I think the argument is that, if we are asking them to make contributions that require a lot of effort and energy, and input, then there should be some form of payment for that, payment for their time. I know some, I think, I know one of a group on a charity, I think it's an Alzheimer's charity, and the lady I was talking to there, she was saying they actually chose to not get payments at all because they said, you know "We're doing it for the charity." I think it's a thorny issue this point of, which points of being a volunteer moves over into being a paid contributor to a project. But again, personally, I think if, I think if we really want sort of genuine involvement and insight from people then it has to be sustainable and it has to be supported financially. 

I think there's a lack of guidance on what number, you know, what figure you put on it. Probably the question I get asked most often by people in the department is, you know, “what do I pay them?” You know, is it fifty pounds, is it twenty pounds and there seems to be a reluctance, an understandable reluctance I guess, to put a number on that but it does, I think, then leave it essentially at the mercy of what happens locally and at the mercy of, people always go for, you know, the smallest number that they can and if they find out that someone in, you know, the next university only pays ten pounds an hour, then they’ll go with ten pounds an hour. I think it's a really complicated one and I know it's, I think. I think for the PPI members I think, I think that they feel it's disrespectful when they're not given what they would view as appropriate sort of compensation. And an issue we have here is just the speed with which they get, you know, the refunds. 

There's a thing in universities you wait, you know, six months to get your expenses processed or something and I think for, you know, the PPI partners who are saying, "Well I'm waiting six months later, I still haven’t been paid for this." It feels disrespectful I think. But then, you know, that becomes a struggle for us because we don’t have any sway over finance [laughs] to say, "Please pay these people quicker." So I don’t know, I think the finance one is a really, really complicated one.

And I do think it's one where, I think there is a need for kind of leadership from above whether that’s, you know, the NIHR saying, "These are the figures that we recommend; this is the policy we recommend about finance," or, as we're trying to do here, we're trying to get kind of a top-down, like a faculty wide kind of strategy that says, “This is the amount that, kind of, we recommend that people get, this is how we recommend you pay people.” So recommending kind of cash on the day rather than expenses if you can and things like that. But yeah it's a pain in the arse, it really is [laughs] – for us and for them, I think it's a real pain so.

From her experience Sarah does not believe anyone would seriously be motivated to get involved just because of money.

I personally, and this is hard, I feel like well if they say that then I don’t want to. Personally I think the amounts that we offer and the comparison - demands that are placed on people even if it's just sitting through a really boring two hour meeting about a trial. I don’t think people are going to put themselves forward for that just for that money. I don’t see that happening personally. You know I, and particularly if it's, you know, people talking about their health problems and stuff, I feel like, maybe I've been lucky – in my experience people who've come into PPI they’ve had a genuine interest, you know, they’ve been passionate about some aspect either about an illness or about a research study and, you know, whether it's worked out well in other ways, it's felt to me very genuine why they’ve come, so I've never experienced that so that’s kind of news to me I must admit. And what, oh the value for money? Mm I mean I suppose that depends again, it goes back to what do you mean by better research? If we're giving these people this amount per hour to attend the meetings and make the research better what does that mean? I don’t know, do people use that a reason kind of like they're saying, "Oh I don’t think its value for money".

Both patients and members of the public can contribute, depending on the topic. Sarah A is annoyed when people dismiss PPI as ‘just one person’s opinion’, though diversity is important.

You appoint sort of the person with the appropriate skills and knowledge or interests and I think a lot of what we do is with patients, because we're looking at sort of health services and illness experience. And so it tends to be people who've had that illness or who have experienced that treatment who then come along and, you know, want to talk about it. And, you know, sometimes don’t like the treatment they're given so feel like they want to come and have input into what should be done. 

But as, I think the idea of having ‘just’ a member of the public, I think that is really useful because in the broader sense of, as I said, being able to explain what we're spending the public's money on and have members of the public agree with that, then yes they should be. They don’t have to of had specific sort of experiences and illness, and I think that is important to get a sense of, sort of, the diversity of experience patients can have. You know, there's the classic thing they often, you know, there's perhaps just one PPI member who gets involved and it always really frustrates me when people will, you know, they’ll only budget to have one PPI member on a project and then they’ll say, "But the problem is it's just one person's opinion," and you think, 'Well there was a simple way round that wasn’t there at the start?' - Sort of numerically speaking. 

So I think, you know, yeah I do think there's a role for members of the public and I suppose I could think of a lady who attends our group who hasn’t had a specific condition as such, or a treatment, I don’t think she'd define herself as a patient. But she'd just define herself as well, you know, I am, if you're a member of the public in the UK you use the NHS; you are a patient in some sense and so you can still bring, you know, experience and insights into that. So, yeah.

And the other thing you touched on there was the issue of representativeness.

Mm

What do you think about that in a debate?

I do think that’s an important debate. I think, you know, there's the beyond usual suspects…

Hm mm 

…kind of argument and I think that is important. I think you go to PPI group meetings and it is predominantly kind of white, middle class, retired. So I think there is an issue of how we reach out to the easily ignored sections of the population and service users who might not typically get involved in this kind of work. I suppose having said that, part of me always worries again that it's another way of devaluing the contribution that those people make. I think if you're saying, for example, that I want to talk to a group about their experience of depression, then I think if you get people who talk to you about the experience and you go, "Oh but I'm not going to listen to it because you're not actually my target group." 

In a way that’s your fault, you know, you should have gone out there and tried to recruit to that target. But I also did think you shouldn’t devalue the experiences of anyone if it's, you know, if its experiential knowledge as we say, then their experience is as legitimate whoever they are. So that’s my worry, that’s I think, I get, I worry about that argument, as I say, because I think it can be used to, to devalue what people are saying. But I think, you know, everyone who works in PPI needs to kind of acknowledge that we do have a problem with lack of representation and to think about how it is that we get people involved in PPI because there's obviously a lot of people we're missing, or we're not reaching, or we're putting them off somehow. And I think we should be asking ourselves those questions, definitely. But I suppose what I'd say is that, you know, the white, middle class, retired PPI partners that I work with all say that as well. You know, so they acknowledge that this is a problem and they really want to do something about it as well, so.

Sarah A reflects on two possible futures for PPI. It may become a normal part of practice, or it may fall by the wayside if people think it doesn’t work.

The future of PPI? Gosh wow mm. I think I can envision kind of two possible futures so there's the dystopian view and then the - I think my worry is that, you know because PPI, the idea of involving participants in things and having more accountability and transparency in what we do, that’s not new by any, you know, this stuff's been trotted out before and then doesn’t stick and then gets re-labelled as something else and then doesn’t stick. And now it's out and it's labelled as PPI and I think there is a risk that, again, it just won't stick. It will get seen as, 'Oh well that was fashionable to do,' you know, back then and, but then it didn’t work, it didn’t work. And I think, you know, I think that would be a great shame. And I think for the members of the public who've put a lot into it I think that would, you know, that would be awful. 

And that partly I think is why we do need to start measuring things and sharing outputs and stuff and just start making sure it gets seen before it just kind of crumbles away and becomes something you don’t bother doing anymore.

…I suppose what I'm hoping will happen I think if, I think if it can be methodologically developed more in terms of what you measure, how you measure, how you report it, how it contributes to the sort of wider issues in terms of getting stuff implemented and doing work that is of importance and things. Then I think perhaps people will start taking it more seriously as a research activity almost, or as an activity that feeds research and that is important to the research world and to us as researchers and I hope then it would be sustained because it would have sort of legitimacy and maybe then there could be people who, you know, the way you specialise in qualitative research and mental health and PPI and it becomes something that is, you know, part of your repertoire but acknowledging that it is a complicated issue, it's not just something you give to the youngest member of the team, you, there are specialists in it . Yeah I suppose that, that probably sounds really selfish because it really sounds like I'm saying, "I'd quite like it if I can go into a role as PPI specialist." 

But even I think yeah, I think if it got more, if it had that legitimacy of being seen as a serious research endeavour then I think people would throw more money at it; I think PIs would care more about it and I think hopefully that would cycle that by taking it more seriously it's able to show more serious outcomes and it's able to demonstrate influence or value in some way, whether that’s an intrinsic value or in terms of measureable outputs and I would hope then that it would become - At the moment I think it's a self-defeating cycle that people don’t do it properly, they don’t report it and then when you ask people about it they go, "Well it's rubbish isn’t it?" and it's kind of, “Well of course it was rubbish, you set it up to fail essentially” and so it's this thing of giving it a fair crack of the whip I think to do it properly and in a sound way and a transparent way to let it happen and see if it can make an contribution and then, you know, then if it is absolute rubbish then you know. And that’s one take on it but at the moment I think the future of it I hope would just be that people start taking it seriously and so we start looking at it, genuinely looking at it as part of research and what it contributes yeah [laughs]. It's a tough question.

Sarah A feels very responsible for the people who get involved and feels guilty if progress with the research isn’t as good as they hoped. It’s an ‘emotional burden’.

Are there emotional consequences associated with PPI?

Yeah I think so. I think, I was saying just how I like the fact that my PPI partner is on at me to take this forward and to move forward and to do stuff with it. When I'm feeling like my 'To do list' is endless I don’t like that voice you know and it then feels, but it feels different to not be progressing as well with that as to not progress well with other projects – you know there's other projects that I, you know, need time throwing at them but it's kind of almost a strategic thing and it's, "Oh that needs that and that needs that," whereas this feels like, it feels a bit more personal because there is a person attached to it and, you know, I feel quite guilty sometimes if I'm not spending time on it, or feel guilty like, oh have I, you know have I not done the right expectation management, that you know, does she think this definitely is going to get funded when it isn’t and a lot of the time I think that’s inaccurate, I think actually she's very pragmatic about things and but it is a bigger pressure I think, and that I don’t think gets acknowledged at all. 

And that again I'd almost feel a bit daft kind of, you know, if you're sitting there talking about, “OK, so I need to do this for my CV and this for my CV”, and you go, “Well, PPI will look good on my CV”, but also I just feel really bad about it you know, that sounds a bit silly or I don’t think that’s going to sell it to, you know, my supervisors. But that’s why ideally I think I would like for it to be acknowledged that, you know, maybe it's a good thing that I'm trying to continue this relationship with this person; maybe it's a good thing that I'm trying to sustain that involvement and that collaboration and not just say, "Well you know my time on this is done so I'm going to leave you now." And I think you feel, I think I now feel a responsibility as well to people who I've done PPI with that then if they go and do PPI with another group I worry that group isn’t going to you know treat them right almost which sounds really silly but you sort of feel this responsibility but, you know, they're not going to collaborate them in this way or they're not going to make sure they pay their finances on time and stuff like this and so you end up then feeling responsible for them in a way that I wouldn’t feel responsible for a colleague on another project going to another team. 

Like I say I don’t think that’s intrinsically a bad thing. I think there are elements of that that are good. You know ideally I like having that more personal relationship but yes it does have a certain sort of emotional burden to it I guess which I don’t think gets acknowledged or I don’t think they really get time to sort of explore that. But, you know.

Sarah A suggests people who get involved should remember most researchers really do care about patients. But if they come across tokenism they should challenge it.

Mm I suppose I'd say I know we all look young but we probably are. I don’t know I guess I might say ease up on the, 'Aren't you researchers silly' narrative which I do hear and the, you know, this kind of attitude of, "Oh well they're very clever aren’t they but they don’t understand anything meaningful," and I think most people I know in research, almost without exception actually, care a great deal about it and have, you know, gone into it and stuck with it and put up with a lot of [laughs], a lot of difficulties because they think it matters and they really care about it and they want, they want to see things better for patients – they genuinely do, even if they don’t necessarily communicate that very well all the time. So on the one hand, I'd say yeah maybe be a bit more open minded about research in that sense, but then on the other hand I'd say, I'm now going to now flip that and say I've known of a lot of kind of PPI groups or PPI elements or projects that were very tokenistic and were really, I think, insulting to the PPI member and in that sense I would say find, if you can, groups, local groups that are doing PPI – people like [involvement group name], you know there's an awful lot of people in research, there's always people, and sort of get together with them and make the statement that that is unacceptable. 

You know don’t sort of collude with these researchers who are doing a tokenistic job by engaging with it tokenistically and they probably sound at crossed purposes on the one hand saying be nicer to researchers and on the other hand well saying give them hell. But actually I think, I think somewhere in the middle of that I think there is a balance of saying, "I'm here as a partner so that means I appreciate your expertise as a researcher, but also I'm not here to be taken for granted," I think that, I think would be, that’s a good way to approach it I think and I hope, and hope they feel comfortable doing it [laughs] you know.