Catherine

Age at interview: 29

Brief Outline: Catherine’s job involves research and teaching. She began involving patients and members of the public in her research approximately one year ago.

Background: Catherine is an academic health researcher. Ethnic background: White British.

More about me...

Catherine predominantly does qualitative research and has been a co-applicant on several funding proposals. She learned about patient and public involvement (PPI) when a researcher leading a recent funding application she was working on asked her to take charge of the PPI strategy. Catherine thought she was chosen to do this because she’s a qualitative researcher with a lot of experience working directly with participants/patients and said it felt like the researcher just wanted to tick the right boxes.

At that time, Catherine began to learn about involvement by reading some articles and consulting the INVOLVE website. Despite being given no guidance or training, she devised a plan to involve 4 – 6 people to assist the research team throughout the entire five-year project, designing the study, reviewing information leaflets, disseminating the research and giving advice where necessary. She incorporated a plan for training and costings to ensure people would be paid for their time and be reimbursed for expenses. The funders gave a mixed review on the proposal – some liked it and some didn’t, so it was difficult for Catherine to evaluate how effective the strategy was. She was surprised when one of the reviewers said she wasn’t qualified to lead the involvement because it could be argued that no researcher is qualified to do it. 

Leading something she feels she doesn’t have expertise in was a bit nerve-wracking for Catherine. She said she seems to have become ‘the PPI person’ at work and colleagues have asked for her advice, but she doesn’t feel she has sufficient expertise to provide this. She also thinks that as PPI isn’t valued as much as publishing academic articles or applying for funding, her career may be hindered if her time is taken up advising others on involvement. If it is to be done right, it needs proper resources and administrative support to arrange meeting dates, book rooms and reimburse travel. 

Catherine felt her colleagues hadn’t quite made up their minds about PPI. Some see it as a box-ticking exercise, but others are supportive. Her institution is discussing setting up a panel of patients and members of the public that the researcher staff could involve as and when they needed to. She questioned whether long-term involvement like this would lead to people losing their patient perspective and become more professionalised or like researchers. However, Catherine thinks involvement will enhance her research and will make it more relevant to patients. She said it’s important to actively involve people who aren’t well-educated middle class people so that research can benefit from a range of views. She questioned the current evidence on the effectiveness and impact of PPI as there is little research demonstrating its benefits. Nonetheless, she is convinced that it is worth doing. She would encourage patients or members of the public not to be shy and to get involved in research.

Catherine thinks her colleagues only see involvement as important if it helps them get funding. She hopes to persuade them to see it a positive opportunity.

So far I've met with people to do PPI to write grant applications, but we haven’t got as far as starting the research - although one of the grants has just started and I've got a PPI group together so I'm going to be meeting them from later this month onwards. But until now the only PPI that’s happened has been to write grant applications. So I think my colleagues haven’t had the chance yet to see how it can actually make a difference. So I think once I've started meeting this PPI group regularly throughout the year, I'm hoping that it will be more of “here’s how it can contribute”. Because I haven’t actually spoken really about PPI and what my colleagues think, their attitudes to what it is, so it's probably more hypothetical. This is me just telling you what I think their attitude is which might be unfair, but I think they see it as a box-ticking thing, and I think they think it's important, but only insofar as it's going to be important to get any funding to do it rather than because they think it can actually make a difference. And in fact for the PPI that I'm about to start, for this grant that’s now started, I've had people saying, "Oh just meet a couple of people". So I've put in the structure that we will have four to eight people who will meet three months, every three months. And I've had people say, "You don’t need to meet them that often," or, "Just invite them along to this, just get one or two". So I think they do see it that now we've got the funding we can, they don’t, I think they think we should do the minimum to get away with meeting the requirements of the funder rather than thinking it's an opportunity to do something.

Catherine worries that formal adverts will attract only a certain type of person. She doesn’t ask volunteers about their occupation but wonders if she should.

I mean I've seen job advertisements for PPI people as, you know, like literally advertised like jobs and I think that’s going to be a certain of person who applies for that job, has an interview and gets it, isn’t it? And I don’t know how, I'm not sure really what the answer is to that. I guess I'll see. I actually don’t know. So I've got four people come in who have signed up for this PPI group and one of them used to be an academic, I don’t know what in actually. The other one I've met and is a middle class, well-educated type person. The other two I've never met, I don’t know, I haven’t really even asked what their occupation is because, to me, the fact that they're – I've made sure that they're willing to put the time commitment in and that they know what's expected of them, but I haven’t asked what their occupation is, which maybe is, maybe I should be more selective. Because I do think as well that you're at risk of getting people who just are in it for the money. So one of the first strategies I used was to put flyers up, saying, 'Are you interested in being involved in research?' And it had some basic information about what would be involved, what would be expected, the time commitment, you'd want them to read and comment and come up with ideas, but it did have the money on it as well – like that they'd be paid twenty pounds an hour. And I had quite a few people ring up, more than I needed, and I'm sure a lot of it was just because they see it as an easy way to make money. So you think there's a risk that you'll get people who maybe aren’t that interested in helping with research but just want to make the money.

Catherine had no formal PPI training and used NIHR INVOLVE’s website to teach herself. It would be useful for more people to be trained, but all researchers should feel able to give it a go.

I don’t think I knew really much about PPI at all and I wasn’t told by the person asking me to do it, “This is what it is” really, other than just really vaguely, "You need to speak to people". So I read up about it myself. So I found some articles on it and read up about it on the INVOLVE website before doing it. But there wasn’t really any guidance within the group that was asking me to do it at all; it was more just up to me to find out. And actually I think they probably would have been happy if I'd just spoke to one or two people without really researching it properly, but I wanted to know what I was doing, so yeah, I think I didn’t really know much. Yeah, there was no kind of training or no information given, it was more “just do it”. And so I've mainly found stuff on the INVOLVE website…

And I think the strangest [grant peer reviewer] comment I had - well one that I was most surprised at - was one reviewer said the person who would be leading the PPI, which would be me, has got no training and nothing on their CV to qualify them to do it, which I found the most surprising kind of comment. But maybe we should have people more trained in it, but at the moment I don’t see that there are people really, many people, who are trained to be able to have a trained PPI person on every grant application put in.

Yeah. And why did it surprise you that comment?

I guess because in the department where I work there's no PPI expertise that I know. There's no-one I can go to get any help on PPI, and in fact people have more have come to me to ask for advice. And I think I've kind of been pigeonholed a little bit into a PPI person, which I find annoying because I think it's something that everyone should know what it is and be able to do it. I don’t think that because I've done it for one application people should be coming and saying, "How do you do PPI? Or can I use your PPI ideas?" you know. I guess I was just surprised because I can't imagine there's many people who are well trained in PPI – I mean, I've been to a couple of courses on it and read up on it, which I think is more than what most people are. 

Catherine would love to see more training in basic good PPI practice, but senior researchers who need it might not attend. Small acts by a good chair can make a big difference.

What about training researchers?

I don’t think they'd go, a lot of them. I think if there's training for people on how to do PPI, I think like I would find that really a useful. I’d love that, and I think a lot of people would, but - maybe this is being unfair - but probably the PIs or the more senior researchers are going to be really important in getting PPI going because if they're on-board it'll happen, and if they're not on-board it'll be more of a struggle. So those are the people really you would want to go and train like that, but I think those are the ones who are maybe less interested – although that might be unfair – but certainly have less time and are just going not go, I would expect. But it would be good if they would go. There are a lot of people who would go, I suspect, but I think we need is some kind of an attitude change in more senior people in particular.

Mind you, whenever we have new people in meetings the Chair does always make sure that we introduce ourselves and say who we are but, so I'm sure that wouldn’t be a problem. But the Chair, I doubt, would have had any PPI training. So basic things like, because I've been to training – well, not training but a couple of seminars on it - and just basic things you might not think about, like perhaps giving everyone a name card to put in the front of their desk so people – because if a couple of PPI people come to a meeting with a lot of people who know each other, they're quickly going to forget who's who. And make sure that they're not sat huddled away from everyone else. And I'm sure there's basic things like that that maybe I could suggest… In fact, maybe I should try and introduce the Chair first just to the PPI people on their own, then they know who it's going to be and have a few minutes to chat first – maybe that would be good.

Catherine worries that some people may become too expert, but equally they need some training to give them confidence and skills to contribute.

I think that’s a whole other issue about how much you want to train them. So that lady from the NIHR, who I told you spoke as a PPI person, is obviously very experienced and has been doing it for years, and I think that then becomes something a bit different to the PPI that I envisaged because that’s more of a patient researcher than a regular member of the public. So I think that’s a whole other issue altogether – how well or how expert you want your PPI people to be in PPI. But I think some basic training for all PPI people would be good, not so they become a PPI expert, but just so they can be able to contribute. Because I worry with this PPI that I'm about to start, as soon as they're wanting more in-depth, or they come to some of our research meetings, I'm not sure how much they're going to be able to contribute, which is why I've come up with some definitions and leaflets, and I'm going to meet them first to try and explain things. But I do think it'll be hard for them to actually do anything meaningful, and maybe a bit of training would give them – I'm not sure what that would involve – but give them a bit of confidence and a bit of skills to be able to actually contribute more. 

I think the novel thing you get from PPI people that you don’t have in your research team already is more of a naïve – I don’t mean that negatively – but more of a non-research based point of view of things. So I think they'll question what you're doing because they don’t have the background in academia, which is what I think one of the main things we want from people is to give you their parent point of view or their public/patient point of view. And I think the more involved people become in research and they’ve taken part in lots of different studies and been involved in different grants and they're going to become more from a researchers’ point of view, which we already have experts in that point of view. So I think you want to make sure that they're still coming at it as a member of the public who's different to an academic because otherwise it's, I think they'll become more like the rest of us are. But it's not necessarily, I think it's good if they do know more the ins and outs of things… I mean it would be good for them to have a base of knowledge to know how things work and the constraints that we work within and how, what's a good study design and not, you know, things like that I think would be useful. But I think there must be a point at which they become too expert that they're more like an academically trained researcher than like a member of the public.

And how do you think you would know if they crossed the line into that more expert role?

Well there wouldn’t be one fine line that they either are or they're aren’t, it's a continuum, isn’t it? So the grant that I’ve told you I’m about to start meeting this PPI group – I wouldn’t envisage then using that group for other grants afterwards so it would be, I think, five years and they may well drop out well before five years so that would be the longest. I would say that at the end of that that's, well at the moment, I think that would be that PPI group finished, although they may want to continue and then I guess ethically if you’ve trained someone and they’ve put the time into it and they’ve enjoyed it, then you do have responsibility to keep them involved if they want to so I guess we'll just have to see when the time comes. It's hard. I don’t know, I don’t know if it's a problem or not, I don’t know what other people think really either but it's just, I'm not too sure. 

Catherine feels isolated and is left to do much of the legwork of involvement herself. She’d like better admin support and more nationally shared resources.

So I do feel a bit isolated in doing the PPI because I don’t think there's that much support in terms of anyone else being involved. I think I'm just doing it on my own really, but I'm hoping that once I've done a bit of PPI and I will get the PPI group to meet a few different researchers at various points, I'm hoping then people will be persuaded that it can actually be useful rather than just something that we have to do, but just wait and see. There's some people do have a better response towards it. Like a couple of my colleagues, two or three colleagues are positive towards it and have said that they think it's going to be good for this grant, but on the whole I think the general attitude is that it's just something you have to do.

And you talked there about not being given any extra time to do this – but what are the sort of resources, I suppose time being one of them, but the sort of resources that you would need to effectively do PPI as part of your job?

Yeah I think time is a big one and I find it irritating that I have to even book rooms and find like just the time to get a group of four or five people together to find out when they can come, make sure they know where they're going, give them directions. And then there's the whole refunding them for travel expenses, any other expenses as well as paying them – like that’s another thing to get all the forms together. And I know it's not much, but when I'm trying to be a good researcher I don’t want to be faffing around trying to find out how to pay them, what form to use, checking that that’s been done. So time, as well as the time of actually preparing materials for them and then meeting them. Like I think the time is well spent meeting with them, but there's a lot of other faffy time around that. 

I think when people come into the first few meetings they're not going to know at all what a lot of basic stuff is, so I've written some background information. I've written an information sheet about what we want out of PPI. And all of those things are quite generic that we could just have department ones or research group ones or even NIHR ones, I don’t know, rather than me having to come up every time with writing – I've now written a kind of an agreement sheet that we'll try, and in the first meeting we'll try and come up with a list of rules that everyone agrees to and I think those kind of things they're pretty basic really. It would have been good to have, maybe if I’d searched better, I would have actually even found them. But within my department I couldn’t, didn’t come across anything like that. 

But other than that, I mean there's money and I felt like we'd budgeted enough money – we've budgeted for travel expenses, payment of a hundred and fifty pounds a day or equivalent for half day or quarter day – and printing and possibly sending things by post if people prefer. And we have budgeted a little bit for training, but I've not actually been able to find out exactly what training would be available for people. So that was another comment I got from one of the reviewers was that you'd budgeted for training but they wanted to know what that training would be. So I've actually been in touch with RDS and asked them, but I haven’t had any response yet. I've been trying – I know of one course in another university that they have members of the public but that’s stopping. So again I'll have to look a little bit better but it would be good to have an idea of specific training that we could give people.

But as well it would be good if there is some kind of admin support in terms of arranging stuff and sending stuff out; booking rooms, finding meeting times, because I don’t think I would want to do that for multiple groups of PPI people, and then distract from the things that I am going to be assessed on, which is like publication output, teaching time – stuff like that. I don’t think at the moment PPI is up there, the equivalent of some of that stuff.

If people being paid for involvement come up with ideas you’d never have thought of, that’s good value for money – even invaluable.

Yeah, well you do want value for money but it depends on what you see as value for money. So probably some people saying that mean they want experts who are going to re-write papers for you, they're going to come up with amazing ideas. But actually one of the values, or the big value of PPI, is hearing the opinion of a group of people who you maybe wouldn’t actually hear. So in that way, having them come along, and tell you what they think, is good value for money. I'm thinking I have been involved in another lot of PPI – there’s a panel of parents that a colleague in another institution has, a panel of parents who she meets every two months or so, about anywhere between two to six parents each time, and she meets them quite regularly and they – I'm trying to think whether people would think that they're value for money, because they do comment on or discuss a lot of ideas. I've been along a couple of times – they do discuss a lot of ideas. But so one of the last things we did was my colleague said, "What other terms would you use to describe a fever?" And they came up with a hundred and one different things that maybe we wouldn’t be able to come with. So I guess that’s maybe not twenty pounds an hour worth in some people's eyes, but it is a kind of invaluable thing that you can get somewhere else yeah.

Catherine worries that some people may become too expert, but equally they need some training to give them confidence and skills to contribute.

I think that’s a whole other issue about how much you want to train them. So that lady from the NIHR, who I told you spoke as a PPI person, is obviously very experienced and has been doing it for years, and I think that then becomes something a bit different to the PPI that I envisaged because that’s more of a patient researcher than a regular member of the public. So I think that’s a whole other issue altogether – how well or how expert you want your PPI people to be in PPI. But I think some basic training for all PPI people would be good, not so they become a PPI expert, but just so they can be able to contribute. Because I worry with this PPI that I'm about to start, as soon as they're wanting more in-depth, or they come to some of our research meetings, I'm not sure how much they're going to be able to contribute, which is why I've come up with some definitions and leaflets, and I'm going to meet them first to try and explain things. But I do think it'll be hard for them to actually do anything meaningful, and maybe a bit of training would give them – I'm not sure what that would involve – but give them a bit of confidence and a bit of skills to be able to actually contribute more. 

I think the novel thing you get from PPI people that you don’t have in your research team already is more of a naïve – I don’t mean that negatively – but more of a non-research based point of view of things. So I think they'll question what you're doing because they don’t have the background in academia, which is what I think one of the main things we want from people is to give you their parent point of view or their public/patient point of view. And I think the more involved people become in research and they’ve taken part in lots of different studies and been involved in different grants and they're going to become more from a researchers’ point of view, which we already have experts in that point of view. So I think you want to make sure that they're still coming at it as a member of the public who's different to an academic because otherwise it's, I think they'll become more like the rest of us are. But it's not necessarily, I think it's good if they do know more the ins and outs of things… I mean it would be good for them to have a base of knowledge to know how things work and the constraints that we work within and how, what's a good study design and not, you know, things like that I think would be useful. But I think there must be a point at which they become too expert that they're more like an academically trained researcher than like a member of the public.

And how do you think you would know if they crossed the line into that more expert role?

Well there wouldn’t be one fine line that they either are or they're aren’t, it's a continuum, isn’t it? So the grant that I’ve told you I’m about to start meeting this PPI group – I wouldn’t envisage then using that group for other grants afterwards so it would be, I think, five years and they may well drop out well before five years so that would be the longest. I would say that at the end of that that's, well at the moment, I think that would be that PPI group finished, although they may want to continue and then I guess ethically if you’ve trained someone and they’ve put the time into it and they’ve enjoyed it, then you do have responsibility to keep them involved if they want to so I guess we'll just have to see when the time comes. It's hard. I don’t know, I don’t know if it's a problem or not, I don’t know what other people think really either but it's just, I'm not too sure. 

Catherine isn’t a ‘representative researcher’ so why expect lay people involved in research to be representative?

I don’t think you'd ever expect them to be representative because I'm not a representative researcher, like the GPs that I told you about we've got – how do we know that they're typical GPs being involved? I don’t think you ever - it's not important, as a person who's managing or collaborating with researchers, to be representative. But maybe you want to try and have a range of people, so as I was saying before, I wouldn’t want all well-educated, middle class people – I'd want to think more to try and get a range of different people. So I think – yeah it's important to think about but I think it's a bit of a . You wouldn’t, you're not, like I said you're not using, they're not participants are they? They're collaborating with you to on leading the research then so they're not participants and even if, so I don’t think their representativeness is a valid kind of – well it is valid to talk about but I don’t think it's an important thing to make sure that they're representative . That’s never going to happen if one or two of three or four people…

Catherine feels some of her colleagues have ‘pigeon-holed’ her as an expert in PPI but she’s often anxious about whether she’s doing it well.

I feel comfortable with the idea of doing it and I think it's an important thing to do and I'm happy to be involved because I think it's useful. So on that side of things I am comfortable doing it, but on the other hand, I don’t, I’m by no means an expert at all on it, and so it does feel a bit like I'm leading something without knowing exactly what is wanted. Although I guess, at the end of the day, I'm free to do it how I want within the funder’s kind of regulations. But it would be nice to – yeah, I guess I am a bit anxious how it's going to work out. I don’t know how much they're going to be able to contribute or how I'm going to negotiate that, the relationship between them and my colleagues and make sure that everyone's happy. So yeah I'm kind of waiting to see. I don’t feel as well that comfortable that since doing it once I've now been pigeonholed a little bit into the PPI person, so I've been asked to do it another one or two more times, and so I don’t want to become the PPI person and end up doing it a lot for all different studies – definitely not.

Are there emotional consequences to you - like is it sort of, has it been stressful so far in your experience? Is it something you’ve been anxious about?

It's a tiny bit nerve-wracking to be leading something that you don’t have expertise in, yeah. So in that way, yeah, I do feel the stress of that, being responsible for something that I don’t feel that expert at all in. But then I don’t think any of my close colleagues are - so someone has to step up and do that and I think I'm confident to, like I'm willing to try and learn about it and do it properly, so in that way I think I'm doing the best I can and people aren’t expecting. Yeah, there's no pressure to do an amazing job on it because people aren’t expecting a lot from it, I don’t think. Maybe I'm being unfair, but I don’t feel pressure to do an amazing job [laughs] at it. So in that way the only thing you can do is surprise people positively, isn’t it? I don’t think I would ever have people say, "Oh you haven’t done this well enough" or - It's quite, I see it more as a challenge to persuade people that it's useful and make sure that it is useful, and the only thing I'm really going to lose is the time I'm putting into it, but hopefully that'll be well used.

Catherine encourages people who get involved not to be shy about saying if they don’t understand or don’t agree. Researchers really do value what they bring.

Are there any messages you would like to give to PPI people? 

Yeah, I mean I want to give a strong positive message that they can make it a difference and that we do value their contribution more than just a box-ticking thing. But then when I say we, I'm trying to think who “we” is [laughs]. I guess the PPI, the pro-PPI people of us. But yeah, I guess to not be shy, and be involved, and say when they don’t understand things. That’s what I'm going to try and make sure, that the people I meet know that they should not feel shy in saying if they don’t understand what's going on or don’t agree with something. Yeah, because we want to know what they think even if it's the opposite, even if it's the opposite of what we are saying.

Catherine worries that NIHR funder reviews of PPI plans can be very inconsistent. One reviewer suggested she was not qualified to lead PPI. There is a lack of time and infrastructure to support her.

Well it's funny because since that one as well I've put in another – I've been involved in another grant for the same NIHR and put in a very similar funding, a very similar PPI strategy for that. And so both of them have been through two rounds of review and the feedback has been totally different. So at first it was really positive feedback –“really welcome the PPI strategy”. I've had that quite a lot where people have said - because obviously each time there's multiple reviewers as well, so there's been a lot of different reviews on it, and so a lot of people have said they think it's really well thought out and good and there's a good amount of money given to it and that it's obviously not a box-ticking thing. Whereas the exact same application from another reviewer, they can say it's not enough money, it's not well thought through, it's not enough attention given to it. So it's really hard to say what the consensus is. I think it's a bit, yeah, totally varied depending on the reviewers: some have loved it and some have thought its bad for just the same thing, so. And I think the strangest comment I had - well one that I was most surprised at - was one reviewer said the person who would be leading the PPI, which would be me, has got no training and nothing on their CV to qualify them to do it, which I found the most surprising kind of comment. But maybe we should have people more trained in it, but at the moment I don’t see that there are people really, many people, who are trained to be able to have a trained PPI person on every grant application put in.

Yeah. And why did it surprise you that comment?

I guess because in the department where I work there's no PPI expertise that I know. There's no-one I can go to get any help on PPI, and in fact people have more, have come to me to ask for advice. And I think I've kind of been pigeonholed a little bit into a PPI person, which I find annoying because I think it's something that everyone should know what it is and be able to do it. I don’t think that because I've done it for one application people should be coming and saying, "How do you do PPI? Or can I use your PPI ideas?" you know. I guess I was just surprised because I can't imagine there's many people who are well trained in PPI – I mean, I've been to a couple of courses on it and read up on it, which I think is more than what most people are. 

So for two of the proposals that I've been involved in where I have been leading the PPI I would be expected to lead the PPI if we got the grant, but I've got a very, very low amount of time, proportion of time, which is always a limitation in any funding grant, isn’t it? Like the amount of time that each person's given is never as much as they would want, but I haven’t got enough time really to even do the studies that I'll be doing without any PPI and then leading PPI on top of that is going to be especially difficult within the time. Because it is another separate thing, but I think although it's contributing to all your research you're doing all the things you would be doing without PPI and then that’s on top, isn’t it? And I think it's adding a whole other layer to things which is going to improve it and, but things are just going to take longer.

But yeah to have it more of an infrastructure I guess is what I'm saying. In fact that’s something that we haven’t talked about is that there's some of my colleagues or senior people in my department have suggested that maybe we'll have a PPI group or a big department-wide PPI set of people that we could dip into and out of. And on the one hand I think that’s good because then there would be some infrastructure there – there'd be someone managing it, there'd be a way to say, “I want to tap into that PPI group”. So I think that, on the one hand, is really good but on the other hand, like I was saying before, are those people going to become experts in PPI and then are they actually going to be doing what you want of them? And then if you want specific patient groups I suppose you'd need to go to specific other places to get them, but I guess it would be recognition then that people are putting their resources into the PPI infrastructure.