Jo

Age at interview: 50

Brief Outline:

Jo’s role is to facilitate involvement and to conduct research. She has been involving patients and members of the public in research for approximately four years.

Background:

Jo is a research fellow in patient and public involvement. Ethnic background: White British.

More about me...

After having a career in a different area of academia, Jo got involved in health research as a service user. She had a lifelong history of mental health problems and it was suggested to her that involvement might help in her recovery. She later became employed as an associate research fellow at a university and in her job supports and facilitates patient and public involvement. Jo brings skills and experience from her academic role, but she said she approaches it as a patient rather than an academic. 

Jo said involvement is about hearing from patients and members of the public who have first-hand experience of living with or caring for someone with an illness, capturing what is important to them and feeding that into research. This may happen in workshops or through working with people one-to-one. Jo felt it was important to get a wide range of people involved, not because this would increase the chances they would be representative of other patients, but to ensure those who are less likely to get involved have a chance to. 

One of her department’s aims is to embed involvement in all research, so there is a budget to pay people for their time and to reimburse their costs. Jo thinks paying people is an important part of showing them that their input is valued.  

In Jo’s experience, people are very disappointed if researchers don’t feedback to them the difference they’ve made to the research. She felt that if patient and public involvement was going to move forward then we need evidence of what works and what doesn’t. But she said that it was often difficult to know what difference it makes and to recognise when it has an impact because it varies so much in different situations and in different research projects. 

Working with patients and members of the public can have what Jo described as ‘huge emotional consequences’. She said, ‘It ceases to be an academic exercise. You’re working with real people… and something seemingly innocuous can trigger something for somebody.’ She would encourage more patients and members of the public to get involved and urged researchers to give it a go. She said they could be surprised at how beneficial it is.

Jo thinks people are only ‘hard to reach’ because we don’t try to reach them. Her Lived Experience group ran a community day to get more people involved.

I think sometimes people are only hard to reach because you don’t go out and try and reach them. So I mean certainly some of the things we did to try and encourage would be to just run workshops that necessarily aren’t about involvement but by just trying to raise people’s awareness of research, health services research and how to look for good information and, you know, in a kind of fun workshop. So we’d work with maybe community housing associations or just run public workshops and that kind of gets people interested and involved and you’re reaching a different type of people. 

I think, I think there’s also as I’ve said I think the people that are already involved are the best people to reach other people so for example going back to this Lived Experience Group I worked with we obtained some funding from university as a lay group to run an open day in the university with the aim of that was to engage the members of the public with the research at the university. But we kind of organised it and ran it and hosted as lay people inviting other lay people to kind of engage with the research. So it was kind of a nice way of doing it and we combined that with a kind of a self-help bit as well so we had lots of experts to come in and talk to people and we had lots of community groups and charities as well, so it was kind of a self-help thing but also finding out about research and involvement in research so that was a nice way of kind of doing that. 

And we also do community events I think if you’ve got members of the public going out to, we’ve talked to other members of the public and just being aware of, of where you can do things I think sometimes and if you need a specific, I don’t know a specific patient group then just being creative about how you go out and reach people and do a bit of leg work. But often, you know, knowing people, knowing people because people know other people and they know other people and actually if you put a bit of effort into that, that’s often the way to reach people.

Jo can see the risk that people become ‘professional lay people’, but at the same time said people’s health experiences remain ‘very raw and very real’.

Yeah I know I don’t think you do. I can see in some circumstances I think there are some, you know, there are some lay roles which people are kind of formally interviewed for and I think that’s kind of a slightly different process and a different type of involvement and I think having those sort of professional lay people does worry me slightly I mean we don’t tend to do that sort of involvement ours is much more open involvement. But the thing, I can only speak from my own personal experience and from other people I know that I’ve worked with who have also been patients or carers and come into research and I think all of us would say that our, our lived experience remains very raw and very real and actually a part of you that, you know, did the fact that I know how to run an RCT or to do academic research is irrelevant really because, you know, I lived through those experiences and I know what it’s like to live with severe mental health conditions day in day out and to struggle to go to work and to be, so I don’t know I really, really don’t.

Jo feels her dual experience as patient and researcher enables her to empathise with both perspectives.

Thinking about you as somebody who kind of came into this from a patient’s point of view. Did you have to re-think your role or think about when you started your job - did you have to think about who you were? Were you the patient service user researcher or were you researcher researcher or what, do you know what I mean?

No I don’t really think about it at all, I think I’d… I think I deliberately left my previous career behind me and that was in a different field although I still carry all that experience with me and, and that’s really, really useful but I think I’d come into this much more with my patient hat on in a way but I think what’s nice is I do kind of span both of those because I kind of understand where researchers are coming from and I understand what they need and want and what the university needs and wants but I also because I’ve got that lived experience and it not necessarily being good experience I’m feeling that I carry a lot of, of other people’s voices with me as well. 

So I kind of came to it more from that side I think and being very happy to kind of come in at the bottom and just work in that environment to help and support other people. So I think I’ve got an awareness of it but I think it’s my lived experience actually carries me through a lot of the time and actually is really, really helpful if I’m in a workshop or something and other people who may be vulnerable and, and struggling and it really, really helps to be able to share their experiences and not to come in as an, an academic and kind of with that hat on if you like. So I think I suppose I approach it from if you like I kind of approach my work from my experiences as a patient more than I do as an academic.

One of the other patients turned researchers or service user etc. how would you, what’s your preferred term, do you have one?

I don’t have one, I don’t, I don’t really think of it like that to be honest because I was a, I was an academic researcher and a patient all at the same time and I suppose I’ve been, I suppose it’s just which one’s kind of got, got more weight at the time.

Jo does not get hung up on issues of representation. It’s good to involve lots of people, but anyone’s experience can be valuable.

I don’t, I don’t think, I don’t get too hung about it, I think you can get yourself really tied up in knots worrying about how representative people are. People come with their own lived experience and I think you should value that wherever it’s come from. some people I come across will say I’m only here to represent myself because that’s the only person I can represent, other people come and say no I’m representing other people as well as myself. and I think there’s always an element when you’ve been around, I think what I’m always struck by actually is if you spend time around people, for example my experience of depression we may come from very different walks of life we’ve had very different experiences you know in a kind of working life and our social lives. 

But actually around our illness there’s an awful lot of commonality of experience. You know, and we’ve experienced the same trials and tribulations and issues with accessing therapy and problems with therapy and they may be slightly different because we’re all individuals and experience depression differently but, but actually there’s a lot of, I’m always struck by how common the experiences are. And I think so it really doesn’t matter who you are or where you come from, and you don’t lose that experience. I mean I was an academic at the same time that I was a patient with quite a severe mental illness and I see the two in me in some ways as quite separate because I wouldn’t want to relive that experience of illness and all the issues with, I mean that’s one of the treasons that I got involved was I didn’t want people to experience what I’d experienced. And I think that experience will always stay with me as, as that lived experience and I’m not really sure that it’s particularly covered by who, who I was in terms of being an academic. 

I don’t get hung up on it too much. I think we should value, if people are coming with genuine experiences and we should just value them whatever and not worry too much. You can’t represent every single person, every single past experiences, the same situation differently and everyone interprets the same situation differently so we can only hope to, I think the more people we can involve the better, you know, the biggest spread of people we can involve the better and I think that’s one of the roles of having Patient Involvements Groups they’re the perfect, the perfect people to go out talk to each other and talk to other people and get them involved. But I don’t think we should ever stop trying to involve more and more people but I don’t think we should ever kind of be dismissive of people’s experiences.

Jo says PPI meetings can trigger unexpected emotional responses. Researchers feel a responsibility to take care of people and that can be ‘a very personal emotional cost’ for them too.

Are there emotional consequences of involvement for researchers? Can there be?

Yeah I think anything that involves working with, with patients and members of the public can have huge emotional consequences you know, it ceases to be an academic exercise you’re working with real people who, who can have incredibly and sometimes you don’t know you can involve people I’ve been in situations before where you just don’t know how something’s are going to pan out and something seemingly innocuous can just trigger something for somebody or, you know, and you, you have responsibility as such to take care of the people you’re working with and I think there is, that’s a very personal emotional cost because these aren’t other researchers, these are patients and members of the public. So yeah I think that can be quite difficult, I think you, on the one hand you feel a responsibility to those people in terms of delivering what you said you’d deliver but there’s also the kind of, the managing and holding of their expectations and their emotional responses to the process and dealing with things when things go wrong, dealing with thing when they go right, you know, all of those things, you know, ultimately you are going to illicit strong emotions in people, so I think it does actually. I think you just need to be aware of that, it’s not all the time and it’s not always negative but I think, you know, it can be a real roller-coaster.

Involvement can be really rewarding. For Jo it helped her ‘learn how to be a person again’.

Also give it a go. I think it can be, personally I found it really, really rewarding to go from complete low point where I’d really, really didn’t think I would ever be able to do anything again and through my involvement it was through actually being involved in various, you know, patient involvement groups that I actually kind of learnt how to work again really just to learn how to kind of be a person again if you like. So I think it can be hugely rewarding.