I think it’s really important that people are able to be involved. Sometimes that means that they do need to be paid in order to make that happen. I think the benefit system in this country is so weighted against people doing this sort of involvement and getting any financial benefit from it, that that is a real pity. That I mean for me when I’ve been involved, I mean for a number of years I was self-employed as a trainer and so if I was going off to spend a day in London at a funding panel, I might have to turn down work to do that. If I wasn’t getting paid for being on the funding panel then I couldn’t have done it. So it was important for that reason.

It is a thorny problem, because I am also aware that I’ve been on other things that I’ve been, I’ve not been paid for, that I’ve just done because I was interested in, and I thought they were worthwhile and useful things, and I don’t think they were less worthwhile because the funding wasn’t available to pay me. But that said, I’ve been on other things where the funding hasn’t been asked for, for participation and then participants are invited saying, Oh but we haven’t any money. And that’s not alright, actually. If you’re wanting people to be involved, you need to think about it and plan it. I get quite cross when I see on funding applications that weve got public involvement, but it’s Mrs So-and-So and she doesn’t want to be paid. That’s great. If you’ve got somebody who wants to do it for nothing, but what if she gets ill? Does that mean you can’t ask anybody else if they need to be paid? You can’t ask anyone who’s working.

One of the big holes in involvement is working age people. And how are you going to get people who are working age involved if they have to take time off work and they’re not compensated for that? So, for me, when funding bids go in, they should always have an allocation for paying participants, even if those participants then don’t need it and you send it back to the funder. That’s fine.

I think you need to do more outreach. I think actually if people out in the community don’t know that it’s possible to get involved, then you’re only going to get the very few people who find their way in through the thin end of the funnel. I don’t think that it’s good to have the same people doing the same things over and over again. But I think it’s a real shame if you’ve helped people learn huge amounts about these things to then just say, Okay you’re too stale. Go away. What you need to do, is think about actually how those people can be useful in, in different ways, and people who’ve been involved in projects in one way, might then be help, really helpful in other ways.

And also they might be really helpful in helping you to recruit and find other people: talking about what they’ve done, how they’ve experienced it, what they’ve learnt from it, what they’ve got from it. So, I think creating pools of, of people who are committed to involvement in research is really, really valuable.

Yeah. There is a danger that researchers choose people that they’re comfortable to work with because they quite like them. And I have met a lot of people who’ve been researchers in other fields or who have been statisticians in industry, or who have been used in public involvement roles and they’ve been very good at it, but I think public involvement needs to reach wider than that.

It is, that does mean, that you need to have training for people to do these jobs. As I say, I was lucky that my opportunity to get involved happened after I had learned how to read long documents and get information out of them and present it back. That’s something that I’d been into university and learned. A lot of people in my community haven’t had that sort of education and for them to do that sort of job you need to give them the training of how to do it. So that’s one way of getting more and different people involved.

You also need to do different sorts of involvement. Reviewing research proposals isn’t the only way of inputting into research, and so researchers need to be a little bit more, a little bit more inventive about how they involve people: having events where they talk to people in different ways, or get people to put their views in, in different forms. That seems really important to me as well.

So what are your thoughts about measuring impact?

I think there are issues around it. I think there is a problem about pulling out an element of a project. If public involvement is embedded within a research project it’s quite difficult then to pull it out and say what difference has this bit made. And, for instance, trying to do that for statistics or for, it doesn’t, that doesn’t quite, sort of, gel very well. And if, for instance, you’re holding workshops where people are talking with each other, including researchers and, and service users, it’s quite difficult to then pull apart whose contribution made which difference. So those things make it quite complicated. So I think simplistic tools for measuring impact can be quite damaging, because they’re not likely to notice it. But that said, I don’t think I’d want to be involved in research if I wasn’t making some kind of difference by doing it. So, yes, I want there to be an impact and it would be good to be able to start to uncover some of the impacts that user involvement makes, but, as I say, not in a very simplistic way. Some of the proposals for tools that I’ve seen have been just far too simplistic and haven’t actually understood what complex relationships there are in research processes, and that’s something that needs to be taken into account in it.

So what kind of tools do you think are better for trying to capture impact? Are we talking about narrative here, case studies?

I think they’ve got to be part of it and I think they can start to uncover what impact is intended and what impact is not intended as well, which is, I think, something that’s quite important in these very complex relationships. So then people can start to think about actually what impact is it they want to have and how perhaps the best ways of moving that forward? Because people are looking for different things in involvement and researchers are looking for different things, and the people who are involved are looking for different things and the idea is to try and start matching some of that up so that it works better and that’s I think, the purpose of trying to measure impact.

So it’s important to you to think you’re making a difference? So if there were just a moral case for we should involve patients and public that wouldn’t be enough for you?

No actually it wouldn’t, it wouldn’t. I don’t, I don’t see it in that way at all. I think there is a logical should’ in that if researchers want public funding then they need to actually make a case for what they are doing with the public. And involving people, is a good way of actually uncovering the value that research gives and that there is that should. But this is a big investment that we are making, and so we ought to be contributing something. It’s not just about having quite a nice time.

But I found that even looking at the paperwork when I did the steering group, and I found that because that was about very close to my son’s experience, and I just found that too distressing even doing that, so I stepped away from it completely for about three years until I felt a bit stronger and a bit more, had a bit more perspective on it and then I did the reviewing. But yes, there were things in there that still could push the buttons. You know, things around bereavement of parents particularly still, and things around palliative care, still, still could quite upset me. But as I say that’s something that I had to, I had to decide that I was willing to, willing to do that.

I suppose researchers tend to assume that they need people who’ve got direct experience of that thing, which..?

I think it depends on the roles. If what you’re actually wanting people to do is, is to talk about something that is directly relevant to that condition, then having that condition obviously does help. If you’re wanting somebody to say about how participants with a particular condition might cope in your study, then you might need people with that condition to do that. But I think in other roles, people who have a bit of imagination so they can put themselves in other peoples shoes, and experience in other fields can be very useful in looking at it in different ways. Yeah.

Can that overcome some of the hobby horse problems do you think?

I mean I think that’s, yeah, it can do. But you sometimes, I know of, I know of some professional participants who do have an agenda that they take wherever they can get heard. That can be a problem. But mostly, if people have a very clear idea of what would be really useful for them to do, they will cooperate with that and do it. I think the danger of the hobby horse riding is most apparent where there is not a clear guide to what people, what is wanted from people. And, and what they can usefully contribute, and then they tend to fall back on what they always say.

One of the things that I found talking to people who are involved that a lot of people, it’s really by accident that they’ve got involved, and it’s not just about getting involved. It’s about hearing that it’s a possibility to get involved and it’s something that happens. Most people outside of the community that does this, seem to think when you talk to them about being involved, being involved in research, they think you mean either as a researcher or as somebody who has nasty chemicals tested on them, and that’s really the only sort of participation in research people think about.

I think it’s really important that research reaches out to people and connects with, with real lives and real people. It can end up in a bit of a bubble and nobody really knowing what’s going on inside. And then researchers get a bit anxious because nobody values what they’re doing, but then that’s partly because they don’t know what they’re doing, and so it’s difficult for them to be valued. So I think there is a really important piece of work to be done, going out into the community and explaining how health research works. What actually goes on and how people can be more involved in it.

One of the big things people have been saying to me, is they never realised how difficult and how long health research takes. And so a lot of people do something, they speak to a researcher and then they don’t hear anything for a couple of months, and they think, oh they’re not giving me any feedback, they’re not, they’re not that interested. Whereas the researcher might think that feedback is something that you give people in five years’ time or two years’ time or something like that. And that hasn’t been communicated very well in the past, I think. So peoples expectations of what research is, how quickly something will get into practice and how they can get involved in it. All those things are very unrealistic.

So you do have to be willing to take that risk and researchers need to recognize that that is a risk and be willing to support people emotionally should they become distressed by what they find out through, through the process. I mean if you’re suffering from an illness and you don’t realise that it has potential consequences. Or you’re taking a drug and you don’t realise that it has some very unpleasant potential side effects. You may well find that quite confronting, but you need to be prepared for that happening. And it might not be actually in the process of the research that you find that out. It might be through meeting other participants that you find out that these things might happen.

So people who want to be involved, need to actually be aware that they are putting themselves in that position and that they may need to be prepared for that. And researchers need to realise that they may need to support people who find out things that are distressing to them.

One of the things that I bring to my involvement is the fact that I was very damaged through the experience of, of caring for my son. And so I do come to this with wounds. And some of these research projects have occasionally stuck sharp sticks into those wounds and, and it has been very upsetting sometimes. But that’s fine, that’s part of what I’m doing and I, I need to be able to deal with that.

I think one of the things is about actually, I think we have covered it to some extent we were talking about people having their expectations baffled and, and not getting feedback and what have you. But actually there is a real issue about people who get put off of involvement through having poor experiences and I think there is something about needing to, researchers needing to think about what the needs of their participants are. I mean some of that is like really practical things about access and you don’t invite a dozen diabetics to come to a meeting 50 miles from home, and then not offer them a biscuit when you get there. You know, it’s, it’s those sort of things that, that do make a big difference and do have an impact, and so there is something about actually researchers asking for feedback about what the quality of the involvement was and giving feedback, as we talked about before to the participants immediately.

So there is, there is a learning process. That’s one of the things I’ve really enjoyed about working here, is that I do feel that there is a learning process going on. When mistakes are made they’re not sort of like, Oh we mustn’t ever talk about that again. That’s talked about and discussed and learned how to move on from that. And I think that’s something that, that needs to be done much better.

As I say, one of the things that I think really important, it’s helped me to create a new way of being in the world and it’s been part of that process. For me, it’s been a very valuable part because it has meant that I can take the experiences that I had previously with me I’ve met, some of the most amazing people doing really incredible things and learnt a huge amount about what’s going on in research that I had no idea about how that happened and how that worked before. So it’s just been massive. It has very much transformed my life really.

Initially it was about, well I’d spent 20 years very heavily involved in caring for my son, in and out of paediatric hospitals, spending a lot of time sitting, watching and looking and seeing what was going on. A lot of very difficult and painful and confronting experiences, but a lot of good ones as well. And I did learn an awful lot from that experience. And I didn’t want to just let go of it. After he died I wanted to think of different ways of using that experience positively, rather than that just being a shut door and I don’t have anything to do with that any more. So it was something about… There was something in it about giving back, but that wasn’t all of it. It was also about making sense of my experiences, making meaningful and useful.

And it was also about I had to re-invent myself. My role had been as his carer. That had taken all my time day and night. Hed been having quite heavy drug treatments at home and I was giving intravenous drugs day and night for quite a lot of, of his later time. And that had vanished and so I had to come up with a new way of being in the world. And it seemed that it was sensible to use the experience I had from old way of being to help make that happen.

Yeah. Yeah. Yes, it’s like you’d sort of been doing a job basically, that you could then turn to this use?

Yes. Hm.

The giving back part, I mean you said that was part of it. How important do you think that was?

Yeah, I mean I, it is, it’s good to be, to feel that you are able to contribute something, rather than being a, a consumer of, of health services. It is, it is good to be able to feel that you’re, you’re part of, of improving things. That is quite important. It’s not overwhelmingly important over the other things. I’m not in this just for that. It’s also because it’s fascinating and interesting and exciting, and I get to meet some amazing people that I like to spend time with, and I learn huge amounts from doing it. So theres lots of things involved in there.

There is a danger that researchers choose people that they’re comfortable to work with because they quite like them. And I have met a lot of people who’ve been researchers in other fields or who have been statisticians in industry, or who have been used in public involvement roles and they’ve been very good at it, but I think public involvement needs to reach wider than that.

It is, that does mean, that you need to have training for people to do these jobs. As I say, I was lucky that my opportunity to get involved happened after I had learned how to read long documents and get information out of them and present it back. That’s something that I’d been into university and learned. A lot of people in my community haven’t had that sort of education and for them to do that sort of job you need to give them the training of how to do it. So that’s one way of getting more and different people involved.

You also need to do different sorts of involvement. Reviewing research proposals isn’t the only way of inputting into research, and so researchers need to be a little bit more, a little bit more inventive about how they involve people: having events where they talk to people in different ways, or get people to put their views in, in different forms. That seems really important to me as well.

I think from my perspective I’m most pleased about getting different people involved who have very good stories and very important stories to tell researchers, who may not have otherwise been involved in the ways that they are. So I have supported other people to learn how to do reviewing of research proposals, and introduced them to other ways of being involved that they’ve not come across. And I’ve been helping to design this training that takes actually some of these ideas out into communities, and gives other people the idea of how to get involved. So I think for me that’s my main, the thing that I’m most proud of I think really.

What sort of things do you think are the key bits of preparation and training that people need for different types of getting involved in research?

I think it differs, there were so many different things that people do. Some things people I think don’t necessarily need training for. They maybe need some reassurance about what is going to be involved, what is going to be asked of them, and how that is going to be used and valued. If it’s something like being involved in a workshop or a question generation discussion or something like that, people don’t necessarily need to have training for that. But they do need to have a very clear idea of what’s involved because otherwise they turn up expecting something quite different, and then they’re disappointed. I mean they might be nicely surprised sometimes that happens but it, it is good to have a very clear idea of what’s needed. I think if you’re wanting people to assess documents, then I think it’s good to have a very clear method of doing that, and a very, very clear guidance of what they’re looking for.

I’ve seen some where people have been sent a research proposal to look at and they’ve just been asked, What do you think of this? Is this alright for the participants? Well, do you think this should be funded, yes, or no? And that’s really not enough for people. They do need to actually have it explained what parts of their knowledge will be useful if they put into this. I mean are you are asking them, Can you imagine yourself participating in this? Do you think it would feel all right?’ Are they asking people to do things that are realistic? Are they asking people to do things that, that wouldn’t fit with their lifestyle? That’s the sort of thing. You need to give people those prompts.

Well my background is as a carer of a child with a chronic illness. And the very first involvement in research I had was through the hospice where he died who did some work on bereavement. And following that, one of those researchers asked me to be on the steering committee for another research project they did. That was really only a very minor involvement, just reviewing a few documents and not really very deeply involved in the research, just commenting on drafts and things like that.

I had sort of expected to get more involved. After my son died I went back to university and thought I was going to get involved in health service. But frankly I was just a bit too sore to really feel I could contribute very well to that. It, it was all a bit, a bit too confronting and I thought working with other people who were going through traumas probably wasn’t a good idea at that time.

So I stepped back from that and there was a sort of gap in, in my involvement when I went and worked in community research and community empowerment work. So just stepping away from health, but still about, you know, getting involved in things.

And then I was sent an email that a colleague of mine had got through a disablement charity that she was involved in which was asking for lay reviewers for research proposals for National Institute for Health Research and also for funding panel member for Research for Patient Benefit Programme, and she said, This looks like exactly your cup of tea. And I thought, yeah, that’s looks like something that’s really interesting. It’s looking at the area that I already wanted to work in, and it’s a bit more stepped back. It’s not as sort of personal and face-face as some of the other stuff that I was looking at doing. So I thought that sounds like a good way of, of contributing really, and using the knowledge that I’ve got from being a carer.