Rebecca

Age at interview: 31

Brief Outline: Rebecca is responsible for leading research projects in addition to supervising students and liaising with stakeholders. She is also the PPI Centre lead and has been involving patients and members of the public in her research for two years.

Background: Rebecca is a research Fellow. Ethnic background: White British.

More about me...

Rebecca realised she wanted to involve patients in her research after conducting an evaluation of a global user-led research project. She was inspired by the patients who led it. After her PhD, she was funded to carry out some exploratory research projects in which patients were involved. She held discussions with community groups and used their feedback to shape the research. Rebecca built a good relationship with these groups by holding regular meetings so everyone got to know each other. She made sure everyone was included in discussions and that they knew their input would make a difference. 

Rebecca thinks involvement is about getting patients or members of the public to help develop research in its earliest stages, then guide and shape it throughout the process. She said it was important for researchers to be able to communicate well, manage time and ensure the involvement is costed correctly. She thinks it’s helpful to be trained in involvement before you start. 

Involvement is a priority for Rebecca. She said it takes up quite a lot of time, but it’s worth it as it enriches research, especially research that’s intended to improve patients’ lives. However, the current evidence for involvement is limited because researchers don’t always report if or how they have done it and Rebecca thinks it would be difficult to measure the difference it makes. 

Rebecca can understand why researchers might be sceptical about involvement because ‘we live in an evidence-based world’, but she would encourage them to ‘be part of the discussion’. She wanted to thank the patients and members of the public who get involved and remind them that researchers aren’t perfect, but learn from their mistakes. She would like more people to get involved and to ‘work together to improve health care’.

It’s understandable people are sceptical about PPI when the evidence is so weak. But Rebecca argues it’s only by doing it and reflecting on it we can build the evidence.

I think – I can understand why people are sceptical because we live in an evidence-based society and we don’t have much – well not society, evidence-based world – and we don’t have a lot of evidence about it. But that doesn’t mean that you shouldn’t do it because if you don’t do it you can't feed into the evidence. And if you're sceptical and you find you do it and you don’t like it for whatever reasons, then that’s part of the evidence. Because you have to figure out the reasons. You can't just say I don’t like it because if we did that with everything we just wouldn’t ever do it again. But we've got to figure out well why? What works? What isn’t working? And that, it does take time and I know some people will say, "It's not worth the time." But, if you want your work, you know I want my research to be applied. I want it to be of use. And I think if that’s what you want as a researcher then involving stakeholders makes sense; if you involve a clinician why shouldn’t you involve a member of the public or members of the public. I think it's important it shouldn’t just be one person because the dynamics and the power issues that go in in those sort of meetings seem very straightforward if you're not on the other side. 

But when you're the other side and you're the member, you know the one person and you don’t know what everyone's talking about, it's quite hard to say, "I don’t understand that." But if there's a group of you, you know you can either ask and if you all don’t understand then it's easier. But having people involved in your research and, like I say, if you have a clinician because you want their clinical input to shape the research to make input in clinical decision-making, well the end users of that clinical decision making are the patients that are going to be doing it, so why wouldn’t you have them there? And then feed into it, feed into change; like to change the evidence base so we know what's working and what isn’t, so we don’t just say, "There is no evidence so we shouldn’t do it," because if you said that in medicine a hundred, two hundred, well history of medicine's a long time – but you know if no-one said, "Well I would just keep doing it," we don’t challenge that then we wouldn’t, we wouldn’t have a job [laughs]. But we also, nothing would ever change so things are going to change because nothing's ever perfect. But be part of the discussion, don’t just sit there and be a sceptic for a sceptic's sake, scepticism sake. You know I think get involved.

Involvement might not show an immediate difference but its effect could resurface later. Deciding when to measure is a problem.

I've been in around meetings where people have talked about measuring impact of things like the PPI bursaries. So one kind of very quantitative way of doing it would be how many get funded you know. If you’ve had a bursary, how many projects then get funded. And I sat there and I thought, 'Well I've been involved with projects where you had a PPI bursary. That led into a project, that one didn’t get funded but then it got funded a different way. So there's the main funding I maybe applied it for it didn’t work, but the development work didn’t stop because the funding didn’t happen. 

And it either fed in in terms of thinking about analysis in projects, or it fed in in another project grant and that got funded. So it's not always quick, which, you know most probably good things aren't, but for an impact statement for a two-year project or a twelve-month project that can be quite challenging because you might say, "Well it's had this, these very specific impacts, some of them I'm not going to be able to tease out." But then it might have a longer term impact that we don’t want to miss in our measurement, because it might be in five – it might be that this involvement started you doing something else that has led to something else and it becomes even more rewarding because you're kind of building on each thing.

…And the thing is actually for being realistic about timeframes for measurement, that’s another challenge actually… The timeframes of things is a really big problem, I think, a challenge. But if you're measuring impact and you say, "Well when do you measure impact?" because once a project's finished maybe the researchers have, the PIs are probably still involved, maybe taking that research on, but maybe, if you're lucky you know, and you're a junior researcher you might still be involved or you might yourself been able to develop other projects. But some of that, sometimes some projects, they go so far and the PI might take it on, and who's the one being asked about the impact, you know? The PI should know. But if it's a bursary that someone put in they might not know all the impacts, but all the impacts, like I say, might just be very difficult to measure. 

Rebecca reflects on managing difficult conversations and emotions, and ensuring everyone gets a chance to speak. Junior researchers may lack confidence to manage conflict.

If someone's sort of dominating the conversation that can be quite difficult how to facilitate the conversation, like any meeting, if someone sort of spends twenty minutes talking about whatever their issue, their thing is and you’re thinking, 'Well if you’ve got this whole agenda or we've got where we need to get to,' that can be quite a challenge when you don’t want to offend anyone and stop them talking, because you want to hear what they’ve got to say. But at the same time you might have eight other people and you want to hear what they’ve got to say. And so that’s another difficult conversation to have. And also if it's very emotional which that often links into as well. If it's a very emotional topic that someone's, we're talking about someone's condition or their lives or their communities and obviously it can be upsetting. I mean it can be very rewarding talking about it, but it can be sort of bring up other things, so you’ve got to kind of balance that and manage that…

I think advanced planning helps manage expectations as much as possible. But, like with anything, with anybody, you can give information and, you know we give out information sheets all the time or we send out emails. We receive a lot of emails; how often do we read everything in it and then remember everything that’s in it, given everything else that we do? And that’s exactly the same. So having it down and writing helps because you can refer to it. Setting it out in discussions at the beginning can help. Again, so that way it's not just in writing, you know that whole adage of don’t just write something; you know, give it two or three different ways because everyone learns in different ways and remembers things. So saying at the beginning and setting ground rules can be useful although can be quite difficult because that becomes quite formal and it depends on the tone and relationship you might have with the partners. So if they're people that you don’t know and you're working with them for the first time maybe it's more of a consultation. You just want to get their ideas and – then that can be really useful but at the same time it might sort of change the tone a little bit. So, which is something you get through experience but it can no matter how much experience you can always go wrong. 

And so I think certain ground rules but then also, with the best will in the world something can upset somebody which you completely unintended consequence that you couldn’t foresee, and then it's about how to manage that, how to help resolve the problem which is a skill and it's a skill that’s taught… It's something I'm keen to bring into our training is how to manage difficult conversations, because it might be a difficult conversation about money but it might be a difficult conversation that someone's getting upset about something. And it might become quite challenging – I'm trying to think of another word to ‘difficult’. It's just unintended consequence – someone gets offended and it's how do you resolve that and that sort of constant management. But often you can be a little bit sort of blindsided with that because you don’t expect it…

And so yeah, you need training for that; you need that skill of how to sort of identify the problem, identify how someone feels about it and think of how to resolve it so it doesn’t happen again. That sort of process, which is a management sort of process of handling conflict, is really important to teach to people and people who are often maybe doing PPI, the involvement work in the beginning, often want junior members of the team and they might not have had that training or might not feel they have that confidence to use it. So that can be another challenge. You'd want to make sure everyone's comfortable and happy but that’s sort of difficult.

Rebecca has always found that if you are open and friendly with people they will help you work out the best way to involve them.

And I think meeting regularly - not all the time, because I think that can be a concern is actually it becomes almost like another job, because people have other things going on in their lives. But so meeting often enough that people felt they got to know everyone, but not so often as to be like, "Actually I can't do it next week because I've just been there a couple of weeks ago." And we just asked people. I think some people – having talked to other researchers about public involvement – [researchers] get sort of worried. And so like you just ask, what do they want to do? And everyone I've ever worked with has always been like they’ll tell me, you know. And I think that’s important, it's that communication – it's just being friendly. I know it's a work setting and we're being formal at work, and we want people to be involved and there are places where that should be formal. But there's other times, particularly in building relationships, we're saying, "If you're not happy, or something's not working, just we'll talk about it." And make sure we kind of come back to that and not leave it as once, because that can be an issue I think. Someone's going, "Oh you're welcome to talk to me," and you never say it again and people go, "Oh," and it can build. 

The ‘people skills’ needed for involvement don’t always come naturally. Training young researchers and providing PPI ‘clinics’ where people can seek basic advice can help.

We’re all individuals and I appreciate that researchers should be able to do all these skills, but its skill development that doesn’t come naturally; not always… If you haven’t got a skill sometimes – you might not know it till you're in that situation, which sounds bad. And that’s where training comes in, training people at the beginning, early, I think, getting doctoral students to be involved to know, to actually have PPI involvement into their work. Even Masters students, and it would be great in undergraduate. …it’s getting people early on, getting them at Masters level too, that it becomes normal. But it's something that maybe has, we've come a bit late to. We should be doing it. I think in certain areas people have been doing it, you know, and to them it's just like, well that’s just normal. But actually there's still this sort of learning curve that’s happening and yet we'd all want to be at the end and have, figure it out, but we've got to accept that we're further than we are. That’s not a reason to stop, though. That’s a reason just to go, "We've got to keep going." But we've also got to recognise it's not going to be a panacea and that we've got to know those limits and we've got to understand that. 

…And there's now three of us that have these like PPI clinics to help researchers to ask. I think there can sometimes be, because there's an expectation of people should always have been doing it and should always know, that some of the basic questions – you need someone to ask the basic questions too. So there's sort of three of us that do that, as you would with any part of your job, you’ve got some skills and you develop something – you then can help people who haven’t done that before to learn it, to figure out what might work for them. 

In Rebecca’s department there is a PPI co-ordinator and strong senior support for involvement. But short term research contracts, and lack of funding for early involvement, are still problems.

Within your department, with your colleagues, the support and the sort of social influences to do with involvement - is it positive, are people accepting of it?

Oh yeah absolutely. I think our department, we've had a PPI group for I think just over five years, no, six years. I think in health research that’s quite early to have a group. Obviously we all think we should have had it longer, once you’ve got PPI partners involved with work. And they really help, they really steer what we do as much as we steer. I think we work well together – I hope. From my view we work well together. But because of that there's a very strong culture of involving people from the top down; the head of department sits with the group at their meetings. He's very, he thinks – well. I don’t want to put words into his mouth, but I think that’s very important to show that it is important, and it doesn’t just happen, and it maybe feeds in. He's sat there. The co-ordinator of the group is brilliant; she really helps, you know, helps everybody to be, make sure they get a chance if they want, if they’ve got an idea to present. So we'll get doctoral students coming in and presenting. And there's now three of us that have these like PPI clinics to help researchers to ask. I think there can sometimes be, because there's an expectation of people should always have been doing it and should always know, that some of the basic questions – you need someone to ask the basic questions too. So there's sort of three of us that do that, have got, you know, as you would with any part of your job, you’ve got some skills and you develop something – you then can help people who haven’t done that before to learn it, to figure out what might work for them…

And then it becomes a cycle of: it just seems obvious. And that’s where our culture, to me, is now: it seems obvious. There's still people coming in who go, "Oh I've never involved people, what do I do?" But then that’s a learning point that we can learn. So yeah I think it's a culture socially. It's very much a place that it can be fostered and facilitated and developed and then the relationships that take time to build, you know as short-term contracts that, fixed-term contracts that researchers have can be a challenge because if you're on a fixed-term contract of twelve months or six months it can be quite hard to build a relationship that’s meaningful…

To me the biggest hurdle is getting involvement early and in a meaningful way if you're on a short-term contract. And I'd love to say, "Let's stop short-term contracts," because actually to build relationships takes time. If I had a magic wand, you know. It takes time and that’s, it's very difficult when you’ve got pressure knowing your job ends essentially on whatever date and, you know that’s a problem. But actually things like the RDS (Research Design Services) bursaries I know around the [region] we're pretty lucky in that we do get quite - I've been very successful, I think I've got virtually all the ones I've applied for. No, I think I've had all the ones I've applied for - and that helps. They're only for NIHR funding though… 

But I think that having the money to be able to have early involvement is a big issue. I think that’s really valuable and, like I say, we've had it. I've been very lucky to have had it. I think that’s something that needs to carry on to maintain involvement and early involvement to keep that cycle going.

Rebecca recommends applying for Research Design Service support so you can pay people for involvement in designing a new study

And also knowing then, there were skills, grant writing – that’s a huge one – grant writing not only for the actual grants, but also things like PPI bursaries, like the Research Design Service PPI bursary. It's really great at helping get people involved early because you can actually give some payment for their time which is, which is fundamental but, it's also really difficult if you're on a project which maybe, or you're trying to do something that’s a bit different to your work so you can't find that money in your project budget. So that helps to get people involved early and, before at the very starting points of an idea. 

Rebecca gets upset when she hears people dismiss all researchers as unable to talk to ‘real people’. She points out she’s a ‘real person’ too, even though she knows researchers need to use less jargon.

I did go to one event where someone said, it was PPI partners were saying, "Researchers are this and researchers are that," and I sat there, and they go, "Well they can't talk to anybody, they can't talk to real people." And I got really upset by the end of it. So I went, "I am a real person." I might not; you know I might, my job is a researcher but I'm still a person, you know? And so I hadn’t had it happen that way before, and when it did I was like, "Well you’ve just given me a label as a researcher, that’s my job. And yes, there's quite a lot in that about me, probably, but I am, I hope, I still am a person and I hope that someone doesn’t get put off, you know”. It is difficult and I think some of that, it's hard to untangle some of the history of academia and how research is seen outside. But at the same time, I come home, you know I have my normal life. So when people say, "Oh, researchers can't talk to normal people," and I was thinking, “I come home and talk to my Mum and Dad, I talk to my friends; they have nothing to do with research”, you know. But maybe but we do get stuck in our language as well. We have our acronyms, our shortcuts the same way as when you interview a clinician they might have their shortcuts. 

You interview somebody about their job and they'd, whatever job it is, they have their shortcuts. And we have to be wary to make sure if we're involving people that we try and reduce our acronyms, which there's a lot in health research. But also our terminology can sometimes be quite off-putting and we spent, you know, what - nine years training to become this researcher. So we're used to it; we didn’t start off knowing differences in methodologies or different terms or whatever. And so we have to be conscious that actually if we want to involve people meaningfully, we have to explain those terms and, or maybe not use those terms at all. But they’re a shorthand that sometimes we do use and don’t notice we're using, and I do like to say to people, "If I'm not making sense, stop me," because that is important. But it's very hard to break that cycle when you then go into another meeting and that’s what you're expected to talk, how you're expected to talk. So that, but that’s part of the learning. Its ongoing learning and development as a researcher.

Rebecca feels researchers don’t say thank you often enough. Researchers are not perfect and they make mistakes, but with patients’ help they can make research better.

And have you any messages for the people who do PPI – the partners?

Thank you. I think that’s, I don’t think we say thank you enough, so thank you. They give up so much time, so much effort. We're not perfect. We don’t know everything. We will make, we researchers make mistakes. We'll learn - tell us, we're people. But thank you, I think that’s the thing, that it does make it better, that your involvement does make it better, it does help and you know we're all trying. If you want to improve research, if we want to improve health, healthcare, then actually research can do that, can help feed into that. It's not going to do it on its own and that’s the point, it can't do it on its own. So get involved because then we can all work together to make it, help improve healthcare.

Being on short-term contracts makes it hard for researchers to build long-term involvement. Research Design Service funding support for early involvement has been helpful.

To me the biggest hurdle is getting involvement early and meaningful, in a meaningful way if you're on a short-term contract. And I'd love to say, "Let's stop short-term contracts," because actually to build relationships takes time. If I had a magic wand, you know. It takes time, and it's very difficult when you’ve got pressure knowing your job ends essentially on whatever date and, you know that’s a problem. But actually things like the RDS (Research Design Services) bursaries I know around the [region] we're pretty lucky in that I've been very successful, I think I've got virtually all the ones I've applied for. No, I think I've had all the ones I've applied for - and that helps. They're only for NIHR funding though…

But I think that having the money to be able to have early involvement is a big issue. I think that’s really valuable and, like I say, we've had it. I've been very lucky to have had it. I think that’s something that needs to carry on to maintain involvement and early involvement to keep that cycle going.