Vanessa

Age at interview: 42

Brief Outline: Vanessa manages the charity and is responsible for delivering their vision for transforming mental health research by championing the role of experts by experience. Vanessa has been involving patients and members of the public in her research for about 15 years.

Background: Vanessa is a research director of the McPin Foundation, a mental health charity she founded with her husband. Ethnic background: White British.

More about me...

Vanessa was an academic mental health services researcher before starting a mental health research charity with her husband called the McPin Foundation. Her interest in mental health stems from experiences at University as an under graduate and in her family, inspiring her to undertake a PhD with mental health service users and progress a career in both university research and within the mental health charity sector. Her charity aims to promote and advise on how to effectively involve “patients and the public” in research. They deliver research and evaluation projects, help others to deliver quality research studies and work in partnership to influence the mental health research sector. 

The McPin Foundation involves people who have lived experience of mental health problems either, service users or their carers/family members, in all their work, from thinking of research questions, reviewing study ideas and protocols, collecting and analysing data, and writing up the findings. The service users are often employed as peer researchers and Vanessa explained that it was important that they aren’t treated differently or highlighted as being different from researchers who aren’t service users. It is also important to her that they are paid, so she ensures she keeps up to date with and seeks advice from experts on how to involve people who are on benefits. She also said it is important that anyone who gets involved is informed about the possible implications for their benefits. 

Vanessa believes peer researchers have a big impact on research. She said when they interview people who have a shared experience she has seen what she described as the ‘subtle’ and ‘very, very explicit’ ways in which it makes a difference. She said it was important to try and capture these and in their next large scale programme of research, they are going to keep a record of how project partners feel peer researchers and service users have made a difference. 

Involving service users in research can have emotional consequences. Vanessa explained that it causes her to worry because there might be serious personal consequences for individuals if getting involved contributes to a mental health crisis. She also said that they’re asking people to share their personal experiences in research, which can be difficult and requires careful consideration and support. 

Vanessa said that patient and public involvement is at an important point in its development, and that she feels it has a lot more potential. She would like to see more networks being developed so that everyone can share information and experiences about involvement and she said that the McPin Foundation was keen to work with others in this way.

Vanessa argues that people with experience of mental health problems bring a valuable form of expertise to research.

So for us involvement is about where we're taking people with a particular expertise, which in our case is living with a mental health problem or supporting somebody who lives with a mental health problem. So they have particular expertise through lived experience of that journey. And involvement to us is involving that expertise and the people with that expertise in research. And that involvement can happen on lots of different levels and so in any project we have to look at what's appropriate and what kind of roles we can support involvement within. But the essence of it in every role it's the combination of having lived the life as it were, either in the role of family or in the role as, you know person living with a mental health problem, obviously people call it different things. But it's that expertise that you're bringing into a research team, into a research project. 

Involvement is more than engagement. Vanessa is working to convince sceptics it makes a real difference to research, and isn’t just about human rights.

I feel that public involvement is something a lot closer to actually involvement in the research process. So I think the distinction is there's engagement which is important but at one level isn’t asking that much of the public whereas involvement is asking for an awful lot more – a lot more time commitment and a lot more interface within academic teams and within a programme. So it's not just reading an article or maybe Tweeting and making a response. It's actually coming to meetings; it's commenting on things; it's getting involved, it's just a – they're completely different activities.

And the challenge or the interesting thing here is understanding why we, how they relate to each other, making sure that they do. And obviously for academics and for research teams is working out who is best placed to do all of this because it's been quite a challenge to get us to a point where PPI is really quite substantially embedded now. And people do have to fill in on their form what they're doing and there is still a sense that some of that is quite tokenistic. And there is great scepticism out there and it is difficult. And I know some people find it quite hard to work out is this going to help me or is this just going to cost me time? Is this just a distraction and it's time I don’t have, and it's money that I could spend differently. So the case for PPI is still being made. 

And I suppose organisations like us are trying to assist with that by showing through the evidence base why it's helpful. It's not just being evangelical and saying it's important. It’s not only saying it's important on a human rights basis; you should involve the people because it's their lives that you're trying to change. But we're also trying to show that actually it's because it will help you and it will deliver better quality research – more focused - and we have really seen the benefits and feel that our studies have improved for it. 

For Vanessa, the benefit for individuals who get involved is as important as their impact on research quality.

When you look at a number of people that we're working with lived experience that we're employing that are on our payroll – that, and the journey that they come from and some, particularly where I used to, where I worked before there was one person who when we first started, you know I don’t recognise him now from where he started and he's been on this journey with research and telling his story and building up his skills and building up his confidence and now works full-time. And yeah has come on an amazing journey and it started with somebody saying, "Why don’t you get involved in research?" And skilling people up, skilling him up and building his confidence to speak out and collect interview data and being involved in writing. And that journey is what you hope we can escalate on a much bigger scale. 

So it's not just about the quality of the research that’s changed; it's also about the fact that you are helping recovery journeys for individuals with mental health problems and their families and providing something else in their life and building up their skill base, etc. and their confidence in doing it. So there are two benefits in this – benefits for the individual, benefits for me personally and the team personally because we get an awful lot out of working with this group.

And then obviously our quality of the research as well.

Some users involved in Vanessa’s mental health studies want to be seen as just ‘researchers’ and not ‘service user researchers’.

Obviously we all use our experience in everything we do and you can't completely lose any of your identities but essentially there are some people that wear it on their sleeve and other people that don’t. 

And I think within our organisation we have some posts that explicitly say, "You have to be a mental health service user to have this job. We won't be, we can't appoint you if you don’t." And we have had the discussion with some people, not currently people that are working with us but people that have been advising us and various different people that we engage with and finding out from other teams [coughs]. So we've had conversations, we had a day where we brought people with lived experience together that have got substantial roles in terms of research and asked them about some of the challenges. And one of the things they said is that sometimes it's really uncomfortable to have a service user researcher on your name badge: "I just want to be a researcher. I'm the same as everybody else here. I happen to be that too and I'm quite happy to talk about it and use that experience but why should I be singled out as different to the person next to me, they're a researcher." 

Involving users when reflecting on the data analysis helped give different perspectives.

But in essence why I'm drawing on this example is because it mattered to me as principle investigator that it had slipped and I wanted to get it back on track. I think that we kind of reflected on what we hadn’t managed to do and pressed the reset button. So we recruited six people who wanted to get involved in the study and were interested in what we were doing in terms of understanding people's lives using a wellbeing network perspective.  

They got involved in the study and they advised us on various things and they helped us develop interview schedules and they looked at some of the data that was coming out of some of the work and, you know we had a whole series of programme and meetings, etc. And so they guided the study for eighteen months in various ways. And then at the end I thought, you know, 'This data's really complicated and we're really looking at trying to make our way through this data. I think what we need is a lived experience perspective into this.' So what we did is we recruited an external, very experienced researcher who works using their own experience of psychosis in the research process and we commissioned them to do an independent piece of work with the six people that had been involved with us. 

And what they did was interview all 6 of the PPI team about their experience of the project; she interviewed them about their recovery and then each of them read our four data chapters and they talked, as a group, about what they thought was interesting in the data; what it meant to them thinking about their own experiences of psychosis; what they would expect to see in the data, what was missing, what was there, what they thought it meant. It was, we did it quickly so that wasn’t ideal, it would have been much better to have a much longer process, but it was just so valuable. So they did the, they did an element of synthesis. And then the research team at the same time were doing further analysis too, and we put those together – we had a meeting together to discuss that. Their work is in our final report, the lived experience synthesis and I found it incredibly helpful and would definitely recommend doing it again.

Vanessa used one-to-one discussions with users to gather their views on a topic they might have felt uncomfortable talking about in a group.

So for example we've got another piece of work at the moment where we're working in a new area. We've never worked in this area before and at the heart of it is understanding women's experience of support during birth and labour. And they're vulnerable people, we're working with vulnerable people who are in quite difficult situations and we're looking at the impact of receiving support just before they have the baby, actually at labour, during labour they have a companion at labour and afterwards. And we're doing an evaluation of another charity that delivers this support.

And these women are, the service doesn’t have active involvement of the women that use the service so it's quite a new thing of thinking, 'Right here we are and how are we going to involve PPI in this evaluation study?' where the people they engage with aren't really used to even being involved and trust would need to be built, that getting involved with us is useful, worthwhile and safe for them.

So we've had to do it slightly differently in that study instead of forming an advisory group we sought to work one on one. We went and consulted women one on one rather than bringing people together as a group because they might not feel comfortable in a group. We sought the advice of four experts – women experts. Again we took our patient information leaflet, we took our… we took all our materials, all our publicity materials. We talked to them about what we're trying to do. We took the interview schedule we were planning as well and said, ‘Does it make sense? Do you think people will engage with us? What can we do to help built trust and encourage women to tell their story as part of the evaluation?’

And the service is very much built on trust and really helping the women who are in, you know got complicated life situations. But they really need to know the impact of this service. So we wanted to really find out from the women how they felt we could best interface with other people in similar situations as them. So we did it one to one and that worked quite well. And we're soon to come together as an advisory group bringing those four people we engaged with individually together. And then we'll think about for the last meeting, how we engage with them in terms of feeding back some of the results. So that is a very different way of engaging than we had done in the other projects.

Vanessa describes a study which showed data collected by a mental health user researcher was no different to data collected by other researchers.

So the key in this study is that the moment we get it we wanted to know whether it made any difference being interviewed by a peer researcher or not. So we did a randomised three-arm bit of the study to start with. We had people who were sent a consent form which said you're going to be interviewed by a researcher, people who were sent a consent form said you'd going to be interviewed by a researcher who's got a mental health problem, and people who were sent a consent form that said that they were interviewed by a researcher, it wasn’t said they were a person with mental health problems but when they were interviewed the person disclosed they had mental health problems. 

And we looked at response rates and we looked at impact on the interview etc. and data and we found nothing. We found it didn’t make a difference and one of the reasons it might not have made a difference is it because it was a structured interview and over the phone the rapport that you build. It could have been the methodology. It could also have been that the people that were – the non-peer researchers – had kind of been trained to a degree that there wasn’t enough difference between them so we couldn’t tell whether there was any difference between this or not. So basically we decided we were just going to employ peer researchers.

Researchers and healthcare professionals need training and mentorship in involvement from the earliest stages of their career.

In terms of the resources that you need to do good PPI or to involve people, or the resources that researchers in general need, what do you think they are?

Training. At one level there is, you can read guidance, can't you? There's lots of guidance out there but, you kind of need on the job training. You need to be inspired that it can make a difference. It starts in, I don’t know, it's nurses, OTs, social workers, psychiatrists, social scientists – you name it, whoever it is that’s going out and carrying out research. It feels that from the very basic level of doing Masters, you know actually under-graduate – under-graduate, Masters, PhDs – need to have modules in there that show the value, if you're doing health disciplines, the value of PPI because I think that actually we're missing a trick by not training and skilling people up from the very earliest point. 

And it's easy to say, "Oh you know there's not enough room and I haven’t got, you know in the PhD, you know it's just too complicated; supervisors trying to make sure you reach the goalposts and don’t add any complications in it and do you really need to collect extra data?" So adding in that sort of layer they might be thinking... But if we're really thinking about trying to transform research and do best practice around research, and if it's a funding requirement later down the line, why aren't we training people to do it at the very, very beginning and making it a requirement at the beginning?' 

So in terms of what do people need I think that, you know they. Mentoring, supervision training is really, really important and it's through that that I think people can become inspired and seeing the real potential, and lots of sceptics are converted as it were, when they get involved in projects where they feel it does make a difference. 

It’s important to give user researchers careful supervision and support, but Vanessa feels she has learnt a lot about research from working with them.

And also if we're getting to a point, as we do, where we are asking them to use their lived experience in interview situations and sharing that, and hoping that that then helps to create an environment and interaction where somebody else then shares, there's quite a lot of responsibility going on within that, and that can be very emotionally challenging for both participant and the individual researcher. So having good supervision structures, making sure you're really explicit with people beforehand that this is what we're doing and the research that we're doing is really, really important. So we, we put, we really try and be very careful about how we supervise people, touching base with them really regularly, getting people to write diaries and reflections. People in those roles are using their lived experience in research to go out and collect the interview data. We're getting people to write careful notes – we meet afterwards and we also get people to write careful notes afterwards. But for me I'm responsible for all this so, you know it is draining, it is emotionally draining and I, and I, but I'm very inspired by it and I don’t ever come to work thinking, 'I wish I wasn’t doing this.' I really feel that this is really important work. 

And, you know we had, we have what we called a lived experience advisory panel and we had eighteen people in a group the other week and I just sat in this group and thought, 'These people are so talented and I learn so much from them. They are, they know, not just about lived experience but about research as well; these are really, they, it's just fantastic to have the opportunity to sit and spend two hours speaking to this group and they're helping to try and shape this project.' And it, you know I just feel a great privilege that we are, we can do this.

Vanessa would like to see more national leadership, networking and shared learning. Too often involvement is delegated to junior people with little support or job security.

The other thing is leadership in all this – who's leading PPI in England? There's loads and loads of amazing talented people that work in this area. There's lots of academics that are committed to it; there's lots of people that are lived experience experts; there's PPI experts. I heard recently that the NIHR, through their Breaking Boundaries review, you know are running some events where they're bringing everybody together that does PPI within NIHR – lots of them, lots and lots and lots. There's loads of expertise out there. So how do we harness all that expertise and have some leadership, have real key leadership and networking around it? Because at the moment there aren't natural networks that you can join to share your expertise and talk to other people in the field and say, "Oh we're doing this over here in mental health; what's happening in diabetes?" I don’t know. I mean I run a charity that’s like to supposedly trying to be an expert in this and I don’t know what's happening in lots of other fields and that’s a challenge for me, I need to find out. 

But there aren't natural networks that you join and I think that something could be done because it feels that if we're saying that PPI is really vital to research, it's a specialism and specialisms need leadership and they need training and they need support and they can't grow without that. It's all, it's here, there, it's all bits and bobs and its people doing it in their evenings. 

It's become to a; it's a level now where it's more than that.

…I think people will probably talk to you about, you know there's great concern that the majority of people working in PPI are in quite junior positions, and low pay; maybe on quite flexible contracts, don’t have any job certainty and the people that get involved, the public that start engaging in research projects and take on PPI roles it's, you know it's a meeting here, a meeting there. So you are, it's, you know it's still at this stage of development and it's trying to work out. You don’t want to strangle all of that and it's great that you’ve got all this innovation going on but how do we then take that forward as a whole body of work and as an expertise area and develop it – it needs structure and leadership.

Vanessa wonders whether we can use less jargon and ‘move the academics towards the lay’ as well as helping lay people understand academics.

The other thing is that there was a research paper that came out recently, a little while ago, and it got everybody talking and at an INVOLVE conference there was a big discussion about it I think about this whole, the whole word ‘lay’ and the contribution of lay to research. 

And again I think it is a really, really important discussion to have about when you're asking for people to get involved because they have a lived experience of something in particular. You also want them to come and have, to get involved in your research study. And as soon as they step in the door of a meeting of a research study does the layness sort of start rubbing off them slightly? Do they get closer? Do they start behaving like an academic whatever that is? And how do you keep them pure in their layness but also make sure they're not disempowered in a meeting where people are having their own jargon and talking in this way and - So how do you move the academics towards the lay and the lay towards the academics? 

We have made great strides with involvement but the case is still being made. There is a role for NIHR to bring greater coordination, leadership and sharing of expertise.

And obviously for academics and for research teams is working out who is best placed to do all of this because it's been quite a challenge to get us to a point where PPI is really quite substantially embedded now. And people do have to fill in on their form what they're doing and there is still a sense that some of that is quite tokenistic. And there is great scepticism out there and it is difficult. And I know some people find it quite hard to work out is this going to help me or is this just going to cost me time? Is this just a distraction and it's time I don’t have, and it's money that I could spend differently. So the case for PPI is still being made. 

…The other thing is leadership in all this – who's leading PPI in England? There's loads and loads of amazing talented people that work in this area. There's lots of academics that are committed to it; there's lots of people that are lived experience experts; there's PPI experts. I heard recently that the NIHR, through their Breaking Boundaries review, you know are running some events where they're bringing everybody together that does PPI within NIHR – lots of them, lots and lots and lots. There's loads of expertise out there. So how do we harness all that expertise and have some leadership, have real key leadership and networking around it? Because at the moment there aren't natural networks that you can join to share your expertise and talk to other people in the field and say, "Oh we're doing this over here in mental health; what's happening in diabetes?" I don’t know. I mean I run a charity that’s like to supposedly trying to be an expert in this and I don’t know what's happening in lots of other fields and that’s a challenge for me, I need to find out. 

But there aren't natural networks that you join and I think that something could be done because it feels that if we're saying that PPI is really vital to research, it's a specialism and specialisms need leadership and they need training and they need support and they can't grow without that. It's all, it's here, there, it's all bits and bobs and its people doing it in their evenings. It's become to a; it's a level now where it's more than that.

Vanessa would like clearer feedback from funding reviewers on how far the level of PPI in an application affected the eventual funding decision.

So I think the challenge is how do you pick up all of these little decisions and these little things that you do in a study that build up to actually changing the course of a study and identifying that’s because of PPI; because it could well be that somebody else in the study team could have that same bright idea and change it. It's really, really tricky to unpick it but it feels that we're in that state that we've got to justify it and we need to find ways of showing the difference. And I think the challenge for us, for the whole sector, is doing that across the whole of the research pathway. 

So for example, when I was looking at the impact of PPI on this programme so far we've got reviews that came out. So obviously a funding proposal goes in and you get peer reviews back and in those reviews, if it's an NIHR grant, you'll get, there's a bit on the form which asks them about the quality of the PPI element of it. So you can take that as evidence, as feedback, of what peer reviews think of your programme and obviously, funding decisions to a degree are influenced by these reviews. So would we have got that grant without our PPI programme? We don’t know. So that then comes back to should you be asking funders to give you that feedback? Can there be a way in which they can impact the fact that you have a score card and PPI is part of that score card. I mean I don’t know, maybe they do but it's not transparent put it like that. Because we need more of that to show that actually, ‘You scored ten. And three of those points came from PPI. And you had to score ten to get the funding’. Ooh well PPI made a difference then – things like, little things like that could make, could really help take us forward yeah.