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Alison’s perspective: What is it like to be involved in research?

This is the second of two blogs which focus on the public’s experiences of getting involved in health and social care research. We interviewed Alison and Anwar, two of the public contributors involved in the development of Agora Digital Centre’s services, about their experiences of getting and being involved in research. In the last blog we heard from Anwar. This week we feature Alison. 

Alison Allam is a lay contributor who lives in York with her partner and has been involved in a variety of patient and public involvement roles such as sitting on funding committees, co-facilitating workshops, and co-authoring papers. 

Why did you get involved in health and social care research?

I think two reasons really. One, I have lived with autoimmune disease since my teenage years, so I’ve had significant involvement with health and social care and still do. So, I’d say my life is very much shaped round having an illness and having a disability. But also, I think I come from the perspective as having learned experience. I always feel I have both, I have lived experience or living experience because it’s ongoing but also learned experience. I have a background in social policy, disability studies. I think that I have both to offer to some degree.

What types of role or roles have you had in research?

A variety of roles, really. My first role was being involved in research funding committees for NIHR (National Institute of Health and Care Research). So, I’ve sat on the Health Services and Delivery Research panel, and I’ve also sat on the Yorkshire Research for Patient Benefit funding panel so that really involves, you know, being part of a committee, making a decision around research funding and whether a proposal is meets the threshold for funding or not. And so, you contribute in terms of reviewing the patient and public involvement plans in conjunction with everybody else in the committee, paying perhaps particular attention to the plain English summary and really making a viewpoint from a public perspective or from a lay perspective, whether that is a good use of public funding, public money. I think then it kind of gathers its own momentum. And I think that’s probably what’s happened with me as then I got asked to facilitate a few workshops with academics and researchers. I’ve also been involved in co-authoring peer review papers and book chapters. I’m also involved with you guys at the moment, you know, starting up this digital patient and public involvement centre, so a variety of roles. I’ve also reviewed quite a lot of papers, you know, they send papers from NIHR and then we get to review them. But beyond NIHR, I’ve also been involved with CRUK (Cancer Research UK), The Health Foundation and several individual universities.

What have you gained from being involved?

Again, experiences in terms of being involved in the research process right from the start, right from the sort of prioritisation of research proposals, what gets through, what doesn’t get through. Right till the very end I’ve been involved in workshops around disseminating findings and the impact of research.

I think I’ve gained confidence as well in all honesty. I think when you live with chronic illness your confidence does take a massive hit because you’re not the same as your friends. You’re not working full time. You’re not doing this. You’re not doing that kind of thing. So for me, at a personal level, it’s given me confidence.

It’s given me to some degree a sense of purpose at times. I feel like it’s doing something that’s socially valuable and socially meaningful. So, which again is important to me. You know, if I’m gonna do something, I wanna feel like it’s contributing to the greater good kind of thing. So yeah and the skill set really. I think you know if somebody said when I started doing patient and public involvement, oh you’ll be co-facilitating workshops and all the rest of it. I would have thought you must be joking, you know, in terms of confidence whereas you do incrementally get more confident, and I think that’s good.

How do you think your involvement has had an affect or impact on research?

Difficult to know, isn’t it? I think the main thing is about having that voice in that room or in that space that is primarily around patient benefit or service user benefit or whoever the end result is for, rather than just sort of being totally focused on the methods which obviously are important. But really thinking about this, is this something that if I had X disease would I really think this is a good use of money or what have you? And sometimes just bringing the real practical aspects of it. There was one research proposal and they were talking about people with the same disease that I’ve got and it was an awful lot they were asking of patients, to come back weekly to have these blood tests and you know to have these interviews and to have these scans and all the rest of it. And I just thought if you’re actually living with this disease and particularly living in a flare up, to me it was too much. I could see the benefit, but I didn’t think they’d get the recruitment.

So I think it’s all about just bringing that patient perspective into it in whatever shape or form you can.  

I think it’s really difficult to measure it. It’s really difficult to measure impact anyway, isn’t it? Really difficult. And it annoys me a little bit because I always think that committees, they never bang on about the impact of the health economist in that room or the impact of the sort of the senior consultant doctor or what have you. That’s taken as read. But the impact of patient and public involvement is always up for debate. I think it’s did it have a positive impact or outcome or what have you and sometimes just having somebody in the room can have that. It doesn’t have to be all quantifiable. I think we’re setting ourselves up to fail if we think that all impact of patient and public involvement is quantifiable, because I just don’t believe it is.

What would you say to others who are thinking about getting involved in research?

I think for me it’s been overall really positive experience. So I think if people are interested in it, well then they should just go for it and then just see how it goes. There’s plenty of support out there. I think that’s something that’s changed maybe in the six, seven, eight years that I’ve been involved. There’s a lot more support now. There’s a lot more resources out there.

There’s an awful lot to be learned, and I think you can get as involved as much or as little as you want to be. Some people are involved in lots of things and that’s OK. And some people really just want to be involved, perhaps in literally a research project, which is around their specific disease or around their specific experiences and they’ve not got an interest in the wider patient and public involvement perhaps that I’ve got. But I think just go for it. I think there’s a lot of support and there’s a lot of value to be gained out of there.

And even if you have a bad experience, which they do happen, that’s not all patient and public involvement. I think it’s not to be totally knocked off by one bad experience. Maybe try somewhere else or try another activity and see how it goes. There are pathways now where you can talk about things if things don’t go right and stuff. And most people who are in research are in it for good reasons, from the professor right down to the lay contributor so to speak. I think most people come with it for it with a, you know, wanting to try and solve problems, not create problems.

Katie (interviewer): Yeah, in in the past couple of years, I’ve rarely come across a researcher who doesn’t wanna get the public or the patients involved. It might just be because of the space I work in, but I haven’t really come across anyone who’s like that. The point is that if it your research is gonna affect people, then you should involve them in the research.

Exactly. And I think that sort of philosophy now is pretty much embedded, isn’t it? And accepted and so I don’t think there’s a lot of push back. To me it’s part of citizenship, isn’t it? To me, it’s about democracy and it’s about citizenship and it’s about equitable use of public funds at the end of the day. And even though you’re not a service user or a patient or a carer today doesn’t mean to say you’re not gonna be one tomorrow. I think that’s the thing people think. And also, what does it mean being a patient? My partner is a patient. He doesn’t go to the GP from one year to the next. There’s nothing wrong with it, or I’m equally a patient, but I’m there, not so much at the GP, but at the hospital a lot.

I think patient and public involvement matters to all, even if you don’t think it does.

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It was great talking to Alison and finding out more about her involvement experiences, what led her to get involved and hear her opinion on the value of patient and public involvement in research. Although we touched on the good and the bad, what is apparent is the value of involving patients and the public in research in both improving the quality of research as well as providing Alison with a sense of purpose and achievement. A massive thank you to Alison for her time. 

Do you want to find out more about patient and public involvement and engagement? 

In our new, upcoming course ‘Nothing about us without us,’ you can learn about what makes good patient and public involvement and engagement in health and social care research. Register your interest for the course via this form or follow us on social media to hear news about the course and its release.