Carolyn

Age at interview: 69

Brief Outline:

Carolyn started doing patient and public involvement about 10 years ago after being diagnosed with breast cancer. Recent recurrences have kept her in touch with patient concerns and treatment developments. She initially worked to improve service provision before moving into working on health research.

Background:

Carolyn has four children, including two step-children, aged 25, 26, 32 and 35. She worked in careers psychology and has retired from her job as Director of Career Development at a large English university. Ethnic background: White Irish.

More about me...

Carolyn became involved in PPI after she was diagnosed with breast cancer. She described herself as the kind of patient who likes to find out information about her condition. After searching the internet for information, she was struck by how common breast cancer was and wondered why more wasn’t being done to prevent it. She wanted to “make something good out of something bad”, so began to do PPI in improving health services before working on health research. The first research project she was involved in was a pilot study that aimed to evaluate cancer research panels, each of which took a different style when it came to consumer or patient involvement. After this, she started attending a national cancer research group, which is where she learned a lot about what was going on in the research world. The research Carolyn is currently involved in is about quality of life in people who’ve survived cancer. She thinks this is important because more and more people are living with and beyond it, so it’s important to ensure that the issues important to them are thought about.

From the early stages of her involvement Carolyn received training in understanding research and doing PPI. However, she noticed that researchers weren’t being educated in how to involve patients, so she and a colleague offered to organise a masterclass on involvement for them. This proved to be very successful and they received positive feedback. The researchers said it made them feel more confident, enabled them to do more effective PPI and to involve patients at earlier stages in the research cycle.

Carolyn thinks PPI is about improving research outcomes for patients and making sure that research is relevant and important to patients. She said it keeps researchers grounded and informed about what the everyday reality of living with cancer is like. She thinks it is important to understand the impact of PPI because that will ensure there continues to be a place for it in research. But because some of the impact is invisible, like if a patient changes a researcher’s attitude, for example, it is difficult to measure and Carolyn suggested that the best way of capturing it might be to interview people. 

One of the things Carolyn said has kept her involved for so many years is that she feels she’s being taken seriously. She believes that having a respectful attitude towards patients and ensuring there is funding for PPI are important in involving people from different backgrounds. Carolyn also said that patient and public involvement in health research was different from a job because you have to set your own limits and learn to say ‘no’ without feeling guilty and like you’ve let the researchers down. She also said there were a lot of benefits to being involved, especially feeling like she’s got a role and is doing something important. Carolyn thinks it’s important that new people are encouraged to get involved in research. She advises others to think about what they can offer and to discuss this with researchers. She would encourage researchers to think of PPI as a conversation and not a ‘them and us’ situation.

Research is funded using public money and it’s good for researchers to be reminded of this.

Well I think there's a bit about being not a patient, but a member of the public. You're almost. It's public money in one way or another usually that's going into the research either directly because it's say NIHR or charitable money and sometimes I do feel I'm speaking more as a member of the public than somebody who happened to have cancer. And that's something about accountability which is very important is that you are spending public money here. Are you spending it wisely and what difference is it actually going to make in practice? Now it's much easier to see that with certain kinds of research than others, but I think it's a question that, you know, one always has to be able to ask and to think about. And sometimes you're just usefully reminding people that, where the money's come from without, you know, without preaching or finger-wagging. I mean that would, I think that's not the style most of us have but that would be disastrous if you did. You know people who kind of get on the high horse about things is maybe understandable at times if you get very frustrated, but it's just not productive. So something about ways of working that people are comfortable with I think that's important. 

Carolyn describes seeing a trial through from the initial idea to sitting on the trial steering committee. She has helped recruit patients with a podcast.

It's interesting. It varies quite a bit from study to study. In the fatigue one, for instance, I was part of an initial group, a wide group of patients brought together by the university concerned to sit and do what's called, you know, the World Café kind of event where we'd bounce ideas around about what was important to us about our own experiences of treatment and afterwards. The unit as a whole is funded to look at that bit that's after, if you like, so it's not doing clinical research of a very kind of pure scientific medical kind about cancer drugs or genetics, any of that stuff, it's much more looking at the psychosocial side of things. So that was the kind of the unifying theme, but up within that they had some ideas, but we had lots of ideas as a disparate group of patients who didn't know each other beforehand, oh but they'd somehow pulled us together, brought us in a room and we started if you like establishing some priorities of things that we'd found needed to be done. And this is one of a number of studies that grew, that grew out of that. 

Now I'm on the, it’s a funded study, it's recruiting. How do I know it's recruiting? Because I'm on the management, what would be the trial, the steering group I guess, trial management group. And what that involves, I guess, is getting updates from the team, going to the occasional meeting. If, you sometimes you might have a view about how something , how something might be improved and if you're involved at the very early stage, at the thinking, you can say, "Well actually that's not the language, that is, you know, that here, why don't you try this. Here's a way of presenting the whole concept that might make it seem more attractive to people." A couple of us also were, one of my colleagues was videoed and I did an audio, a podcast, as a patient giving my perspective to help in the set up in the recruitment, something that people could click on a website and hear other patient's perspective and why we thought this was an important area to research. So, it varies from something really tangible like, OK I did a little interview in a podcast to, you know, this sitting on a trial management committee – there are lots of those around in this kind of work. 

Carolyn has had great fun being a co-researcher. You don’t have to be ‘terribly altruistic’ to get involved.

And just one other thing I would add is that on one project where I was a co-researcher because it was looking at the impact of being involved. And we did lots of fixed groups and things and listening to the tapes something that struck me was how much laughter there was on the tapes. You know people were, they were describing their experiences and there was a lot of mutual support and enjoyment, and those people were, you know, they were laughing about – sometimes they were laughing about bad things as well as good you know, but mostly, you know, it may sound more than paradoxical, but, you know, this stuff can be fun. And we're not all in here because we're kind of, you know, heroic martyrs to, you know. The notion that you have to be terribly altruistic to do this I think is false and you know we get something out of it and that's perfectly fine. I'd be suspicious of someone who said they didn't, you know. I'd be worried in case someone was on a crusade, you know. So those are the things that I'd say.

Researchers with little training or experience of involvement can be patronising in meetings. Younger researchers and social scientists seem more open to it.

Sometimes, I think I see this less now, but something that used to irritate me was somebody would say something in a meeting, a patient say something in a meeting and somebody would go, "Oh that's fantastic, thank you so much". And it wouldn't be fantastic and if it was like you that said it you think, well that was a perfectly ordinary thing to say or somebody else, no it's not. And it's like they're overdoing it; it's like you've said something so we've got, you know. And actually in the end that can be patronising and I think that's probably some kind of, people never mean to be patronising, do they? But it's like a sort of overreaction to a legitimate patient comment of some kind or suggestion. But it's not necessarily earth shattering; it's a suggestion. I'm not sure if I'm putting this over clearly, but it's like the inverse of this, which might get over more clearly the feeling I'm trying to capture, is when people actually feel in a meeting or just a conversation, actually able to disagree with you or challenge you back on something and say, "I'm not too sure about that," or, you know, "What's your evidence for that?" or, "I have evidence that says something completely other than that," you know. That you're kind of, it's grown up enough to have that kind of discussion. And so if that's the grown-up end of the relationship between us and the researchers then the other one I was attempting to describe is like a more infantile version of, you know, patting you on the head, feeling that you've got to, you know, welcome everything. Well actually you should look at our ideas as critically as we look at yours you know? So that's, but I think I see that, I see that less now. And that possibly is partly down to experience, more experience, more confidence and competence on the part of people doing the involvement. 

Partly that's because more people are trained. Younger generations of researchers coming through seem to feel more open to the benefits, but people who made their careers made their reputations twenty/thirty years ago possibly never had to get involved with us as patients in that kind of relationship when they were building their careers, which is one reason why I feel making some kind of, you know, training and development available to those people can be really helpful. It's not just the younger ones. And people when we did the, an evaluation of the training that I've been talking about, some people pointed that out. Sort of the mid-career or late career people have had to just kind of get on with it without training or support, that they're the ones who are supposed to be ensuring that other younger people and often it's the younger people at earlier stages in their careers who have actually had more training. Or who sometimes get it dumped on them. They've been told, "OK you do the PPI," you know, or, "We'll get the post-doc to do the PPI when we appoint whoever that is." You think, 'Hang on a minute, who's going to lead this and support it and co-ordinate it?' And, you know, maybe needs just more than one novice to, it's a mixed picture out there. I see a lot of quite, I thought that what I would see is quite favourable and good quality responses because the particular field I work most in, which is the psychosocial qualitative kind of studies, those researchers, I think, are often very open to and already involved in PPI and interested in doing more. I think, you know, they want, I think they're converts perhaps a lot more than people on some of the much more kind of hard science end who haven't yet had to have a lot of experience of working in a collaborative way with patients.

You need to be challenging and assertive and stand up for your point of view when you feel dismissed.

Being able to stand up for your own point of view when apparently dismissed or challenged and to recognise that in, you know, in academic or research discussion, you know, debate can be kind of quite vigorous, and that disagreement isn't necessarily the end of the world. I was used to that from kind of family background but also having, you know, worked and had to, you know, to be director of something where I was responsible for representing, you know, my Unit and its values and ways in which I was trying to project it within the university and the to the outside world. 

So being able to confront, it's not about confrontation, but it's about, you know, being able to disagree without being confrontational, but certainly you have to be able to confront people at times if their attitudes or behaviour seem, you know, unacceptable, if they're overlooking a patient point of view. But it's having ways of introducing things that you feel are important or maybe something's been overlooked or been dismissed that you want to kind of get on the agenda, get discussed then you need ways of feeling comfortable about doing that and hanging on in there. And something that I probably haven't got enough of or done enough of, but would be good to do, is in actually getting feedback. "OK so if you remember I said this last time? Well what’s act…you know, what's actually happened as a result?" Have, you know, people will often come back to you and say when they haven't been able to do something. It's just not, you know, it's been a reason for it and you may challenge the reason but if it's real then that's OK. Say, "OK well next time let's get that into the funding earlier," or you know whatever the issue might be. 

For Carolyn, paying people for involvement shows it’s valued. It’s important to fund it properly to get a more diverse group of people involved.

One of the things that keeps people in, and I think this applies to me as well as to other people, is feeling that you are being taken seriously. Not just the people who are responding and saying, "Yeah," in a meeting, but overall this is seen as a, you know, a kind of, well a serious important thing to be doing, that value is given to it and one of the ways in which we measure that value is actually are you giving us good admin support, getting us information in time and in a way we can actually access? Because our needs might be quite different from someone who's sitting in a very highly IT sophisticated environment in a university research lab, for instance. And are you acknowledging our time? Some people pay honoraria or attendance allowances; language varies and some people don't. 

My fear is that some of that might be eroded and if people really want more diversity, which everyone's saying they want you're really going to knock that on the head if you don't continue to put resources into it. You know, it makes it back to being a luxury for the retired professional who looking for something interesting, you know, challenging to do. And that's, we have to be more than that and wider than that. A couple of the groups I'm involved with have done great guns recently in bringing in people who aren't, well people who aren't like me, but we need ever so much more of that. We need younger people as well as people who are from ethnically diverse or less well educated, less starting from a different perspective or understanding of what research is. But that doesn't mean that they're not able to contribute; it means they'll have very different things to contribute and we've really got to work to support that kind of contribution and make sure it can happen.

And that does take money I think pretending that it doesn't is just fanciful. 

Researchers need to put resources in place to support more diverse involvement and think creatively where to find people. Adverts in the Big Issue and using social media might help.

Well if you put an ad in, I don't know, the Big Issue and you make it very clear what kind of qualities that you're looking for and you don't emphasise, I don't know, kind of structures or intimidating words that might not be hugely familiar to people and you give the emphasis to, you know, something about the role and that you want to recruit people to and what kind of person you're after, then I think you might draw a wider range of people than if you , I don't know, put something on a university website or use social media. If you want to get young people involved or you want to get a wider range of kinds of people in terms of age groups, types of condition, ability to get to meetings. You've got to create processes and structures round the, simple, simple if they’re there but not if they're not again, like can you pay a carer's support so that the mother of a couple of kids with ADHD can actually get herself into the room to be in that discussion about where research should be going or about a particular study? Can you cover her, you know, those costs for her because if not how are you going to hear from people? And you're also probably, when you're advertising you need to be making it very clear – you know are you offering money, are you offering to cover costs? So going out there whether it's Twitter or, you know, something on Twitter that you get someone whose got loads of followers to retweet and then it's, you know, the job isn't in the tweet but there's a link in the tweet to or, you know, Facebook or places where people are. They're kind of thinking creatively about how to get people or going to the mosque. You know, finding the people who know how to reach people and perhaps also thinking, does everything have to be done through meetings? Are there other ways than, and if so does the meeting have to be at, you know, in a hospital or in a university research institute? Maybe you should be having it somewhere else. 

And again these things sound banal when you say them, but if they don't happen then you don't reach that wider range of people. 

Carolyn can’t give ‘the patient view’, but describes how she can help researchers.

Involved yeah. Well you do need some listening. You need to be able to encapsulate your own ideas and other people's ideas, other fellow patients, carers, either know or imagine, anticipate what they might be. To be able to represent a diversity of views some of which might really contradict your own and be able to say that you know there's a range of views here. One of the things people don't do so much now but it can still happen is people would say, "Carolyn, what do you think the patient view is on this?" And you say, "Well actually, you know, there are lots of patient views". And that's, you know, you've got to learn to live with that. I can't give you a neat, some patients will think this about it and some will run away and some will think, 'Oh no I couldn't possibly,' or some will think, you know, of course, you know, a lot of things you have to be able to say , "Look I think you get a range of responses here, but the way to maximise your responses could be to do this," or, actually what you may be saying to people is “I don't know” – and you have to have the confidence to say that – “But here's a way that you could find out or that we can jointly find out. Have you thought about?" and then make a suggestion as to a way in which they could really get the kind of input that they want. So there are several things there. 

Researchers may be worried that someone will bang on about a single issue – but Carolyn thinks this is a stereotype and isn’t necessarily accurate.

You know people who kind of get on the high horse about things is maybe understandable at times if you get very frustrated, but it's just not productive. So something about ways of working that people are comfortable with I think that's important. 

And I think sometimes, you know, I was talking about relationships with researchers and relationships with fellow patients involved in these kinds of things is it's important for them as well of course, you know actually, you're OK and overcome their fears or their stereotypes which are often to do with people having hobby horses, having a single issue, being stuck in their own, you know, their own history, some problem that they had, or if they're a carer that and bereaved that there's someone, you know, and there's some difficulty that they haven't resolved. There are lots of, if you like, stereotypes that people, I want to say had because I do think there are fewer of those around now as people have more experience and actually see well most of us are actually, just kind of human and we're not always wanting to bang a drum or have just, you know, one issue that we're talking about.

Carolyn thinks involvement opportunities should be advertised and open to everyone. New people will ensure the taken for granted things are challenged. v

I think being open about recruiting people to the, genuinely open about recruiting people to roles – and I'm guilty myself at times of, of simply having said, "Yeah," when someone says, "Would you like to join us at this?" instead of saying, "Yes I would but maybe you should do an open ad," you know. On the other hand I have been part of open, open ads, you know. I've gone through processes, I've helped set them up for other people. I've recently been part of one for a different organisation, not something I've been it, but I was there as the kind of the outside independent lay person. And that was great to be part of that as a, you know, an advertised process, which was new to that organisation, but they will now continue to do it. So back to cliques, back to cliques – we do often, we get to know, we become friends, we get to know each other. We egg each other on to do new things and take on new things and that's great you know. And at the same time I think, telling other people what's possible and feasible and making sure that we bring in people who maybe are a bit different might be a bit difficult, who say, "Why are you doing it this way?" Or, "Don't talk in that language, you know, this is too technical." 

And I think maybe we've all got to get better – and I include researchers here – at thinking of ways of doing, of getting involvement from people who aren't a hundred percent confident about going through big documents. But there may be other ways. We could be using other media much more creatively, constructively, I think, at times to , you know, go out there and get, and test opinions and get people involved, get them contributing, and get new ideas and new people. So it's, I hope we're not seen as a clique or as an old guard. Someone once described myself and a colleague as the Posh and Becks at a peer review [laughs] and they meant it as a joke, you know, and it was a joke, it was terrifically funny. And I kind of knew what they meant. You know he was a bloke and I was, you know, and we were the people who were at the meetings, but I think, 'OK yeah, but you do need some more, you need some more people coming on,' you know and who, you know, will challenge us. So I did see it as, you know, part of our role as to go out there and be genuinely open to new people, but that also means new types of people actually.

There is still some tokenism around, but many researchers have realised this isn’t just a fad and now take it seriously.

I think there was more tokenism around when I began than there is now. I suspect there still is some there, but people are much more sophisticated about disguising it. But scepticism is kept well under wraps a lot of the time. Well I don't mind people being sceptical as long as they're open to evidence, you know. But if it's just further, more than scepticism, if it's actually, "I've made my mind up that this is just a piece of political correctness, which I'm not going to…". There is, I think there's still some of that around but I think maybe some point during the 90’s, no, perhaps no in the, let's say in the 2000s some people who thought, "Och this is a fashion and it will just go," have realised actually it's not going to go and that maybe they should take it seriously. And increasingly as funders write into the requirement for funding a research project that there has been some PPI in planning as well as in how our project would, our research proposal would actually pan out if once funded that that has helped because people have had to take the whole notion more seriously. And as more and more patients sit on the funding groups that look at those proposals, you can sometimes see something that claims to be ‘this is our PPI strategy, this is how we've involved patients and this is how we're going to’ and some of it looks really hollow. But if you're able to say, "Actually this isn't for real," you know, “They haven't really thought about this; they haven't really involved people; they think asking one or two people is involvement”, then you can maybe send something back for another go at writing a proposal with some constructive suggestions about how they might actually strengthen the patient and public involvement. 

I mean that's quite interesting to sit on a group where you are actually along with a range of other research expertise looking at patient and public involvement and assessing it and saying, you know, what's weak and what's not. That's all helped. Some people have had to begin to take it seriously who wouldn't have wanted to. I think a lot of people have genuinely felt the benefit of being made to think about – being made to think about I think sounds a bit more confrontational than I mean, but, you know – coming to see things in the way that's different to our perspective that's different, and that they've experienced the value of having input from patients and so they're kind of ready to do it again, or they just feel more confident about doing it. 

Carolyn doesn’t really like any of the terms used; ‘getting on with it’ matters more than what you’re called. Sometimes she’d just like to be called Carolyn.

Oh. It's probably just as well you didn't ask me this at the beginning because we'd still be talking about it! [Laughs] Oh I kind of, oh God! [Laughs] There's nothing I particularly like. Somebody once called me activist so that was when they writing me into a funding bid for a particular organisation whose, you know, bells that would have rung. No I never know. I sometimes actually come back to saying patient. Consumer sounds a bit passive – it's used a lot in research particularly in cancer research – but it sounds a bit passive, on the receiving end of to me. Patient obviously has its own problems. Service user sounds very kind of, just sounds like, you know, a bureaucratic term someone's come up with. You know, I'd quite like to get to the point where I’m just Carolyn, you know, but of course you can't do that, you have to describe yourself in some, in some way. I think it's useful to have the P, the second P in PPI or now a lot of people are having say PPE because engagement of all kinds, part of what they've been tasked to do. But you are, in a sense, thinking and feeling as a member of the public as well, and sometimes you need to be able to remind people of that so that's helpful. I'm wildly inconsistent, I will use different titles in the one session partly because there isn't any one particular thing that feels right. People will argue about this endlessly. I just want to get on with you know of doing 'it', whatever 'it' is yeah.

Building networks of people involved across different conditions would be valuable.

The changes in future that will come about should make it more possible for me to be having conversations with people doing this kind of stuff in, say, stroke research. Say well there are probably a lot of things in common. Maybe there could be some joint studies, areas we haven’t gone into yet because we don’t see enough of each other across – I know a lot of the people involved in cancer, but I know hardly any of the other people involved in the other fields and I think it would be really good if we did. Because we probably have this common cause to make about PPI and there may be particular things about particular studies where new ground could be, you know, could be broken. And I think also, you know, the ability to say the skill, if it is a skill, “I was wrong about that,” you know, should be, you know, should be able to do that as well.

Have a clear idea of your role and what’s expected of you. If you’re not sure, ask for feedback. It’s striking how much fun involvement can be.

Yeah kind of be clear and confident about your role and if people aren't being clear with you then think about what you feel you could do, what you'd like to do. Maybe what you've not yet been asked to do but could contribute. Or maybe people aren't aware of what you could contribute. And talk to someone about it. Fill a patient on a group if there is one or the Chair of the group. It's often quite useful to have a talk with a Chair of a group before your first meeting, face-to-face if possible to, you know, clarify what your expectations are. Can sometimes take them a bit aback if you ask for it but when I've done it I've always found it really worthwhile. And actually if they often feel a relief because it begins a bit of personal contact between you and the, and the Chair and they can begin to understand how they might get most out of you as it were and the kinds of ways in which you could contribute. If it's not a formal group of the kind I've been describing then I think some of those things still apply. And I guess I'd add if you're not sure, try it. If you're not sure of what you're doing is having an effect, ask. Say to someone, "Look is the stuff, is this useful? Could I have a wee bit of feedback?" Ask the Chair to give you feedback or maybe someone else on the group who feels like an ally or there maybe someone who's, some groups actually appoint someone to be in that kind of role with you.  

And if they haven't that is perhaps something you could ask for that they may simply not have thought of but if you propose it they can say, "Oh yeah I can see that would be good idea." So you know there's lots of kind of practical things. And just one other thing I would add is that on one project where I was a co-researcher because it was looking at the impact of being involved. And we did lots of fixed groups and things and listening to the tapes something that struck me was how much laughter there was on the tapes. You know people were, they were describing their experiences and there was a lot of mutual support and enjoyment, and those people were, you know, they were laughing about – sometimes they were laughing about bad things as well as good you know, but mostly, you know, it may sound more than paradoxical, but, you know, this stuff can be fun.