Experiences of being a public contributor to academic research and processes and the difference it makes to her life.

OK, Uh, good morning. Um, my name is Patricia Jamal. And, uh, I've, uh, been in the UK for the last two years. Now, uh, and I came across, uh, co-production with, uh, through a friend of mine

Uh, I've started since October of last year 2021 since then, I've, uh, accumulated a number of projects that I've been working on, um, one of the major projects that I felt very satisfied, Uh uh, co producing. And, you know, um, it it's still in the running. It's a project that, uh, still, uh, in the beginning stages of it, uh, was the library of Clift experiences and they actually were hiring people who, um, have had health issues, and, uh, which I think most people would would would uh, uh, feel part of that

Um, So I met a lot of other people around. We brainstormed, uh, on, uh, the idea of how we can, um, uh, produce a book that is a lived experience, Uh, through a person who's, uh, sitting, let's say in a library. Uh, the librarian is in charge

Uh, the book is accessible online and in person for people who would actually uh, need it at some stage in their life because, um, uh, there is evidence that it's it's better to, um, contact people who have had the same experience shared experiences as, uh, as a person who's looking into something like this, then, um um, than just like reading a book about a certain topic. So basically, um, it has a lot. There is a lot of evidence that this works better

Um, so we've had around 13 sessions so far where we brainstormed different scenarios and different things, and we really work together very efficiently. And now the researchers have gone back and will take some time to reflect upon the findings of of the group and will get back and start looking into the next stage of the project. Um, and I'm not sure how much involvement there will be for the participants in the next stage, but they said that they will be, uh we will be, um, still part of it

So I'm really looking forward to seeing the outcome of this project. And, um, it seems other parts of the UK and other parts of the world they have done similar things, and it has worked. And, uh, they believe that for mental health issues that that's, um, you know, a good outcome to To to do something like that

Um, So that's one of the projects. The other things, uh, that I've been working on is, uh, uh, I've been hired by three PhD students to work on their, um, PhD projects. And all three topics that I've chosen for these students were all like, things that are interesting for me

Uh, such as, like, multi morbidity, uh, online, Um uh, through, um, online, um, communication through covid. How has covid affected, Uh, health visitors and their mental states. And how will they look forward to, uh, doing? Uh, you know their work without having to go through people's homes

You know, when someone has just given birth, Um, there is a project on, uh, vaping, uh, and e cigarettes during pregnancy. Uh, but we haven't looked into it much at the moment. Uh, the lady is still working on the first stage of stages of her protocol, but with one of the projects that I'm working with with the PhD student, she's actually a GP herself, and she's working on this multi morbidity uh, one that I just spoke about

And, uh, although she's at the initial stages, the beginning stages I've actually been involved quite a lot to the extent that she had to ask for additional funding, because the PhD. Runs for three years, but we've exhausted nearly in the first half of the first year, we've exhausted half of the money that was, uh, granted for for such this, um uh, Endeavour. So, um, some of it is, uh, a little bit challenging, but because I'm actually an academic librarian, and I haven't worked in the libraries for the last two years, I haven't done much of, uh, uh, research, you know, for for the last, uh, you know, a few couple of years

And I feel that I'm actually losing a little bit of my library skills. So that's one of the reasons why I wanted to be involved in something like that. Because I know there will be lots of research and, you know, searching for things and using, uh, logics to to do search strategies and things like that

So, um, and on the other hand, um, being able to help with, uh, health research. So that's benefiting everyone at the end. Um, gives me great pleasure, because it's something that's very valuable

And, uh, you know, it's something positive for the future of humanity and the health. And I myself have problems with my health. So that's, you know, uh, seeing that other people are so adamant to to make things better for us, uh, gives me also a lot of, uh, reassurance somehow, um, so I'm, uh I'm pleased with the outcome

I'm also involved with the subcommittees subgroups, you know, on the communications. Uh, subcommittee, I'm also with my desk, the implementation, uh, team, uh, as part of, uh, uh, being a public advisor with the arc. Um, with the the colleagues

Um, um, what do you call it? Uh, would they call it the assignment? Um, I have been just working with them for the last three months, So we worked on races. Um, one of the projects we worked on was on, uh, doing races. Um, I can't remember exactly now what it stands for, but I know it's like a document

Um, a We have to review a, um a an article, an academic article on health, and, uh, put it in a way where the lay person can actually understand it. So taking, uh, from from that article, like major points the most important points and using like, uh, graphics and the infographics and trying to, um, make it a little bit more visible and then, like, tweeting it everywhere after it's been approved. And so that was something very new to me

Uh, I wasn't sure that I was very helpful, although they said I was. But, you know, I I don't know how helpful I was in that sense. Um, but, uh, throughout my journey so far, there has been lots of positive, um uh, reassurance that it is very valuable what you're doing

We do believe that it's very important what you think about certain things. Um, and I like that. I mean, I I feel really reassured in in that sense, but at the same time, I think it's my own

Um uh, what's the word? Um, lack of confidence somehow that I feel that I do hope that I am as useful as they're saying that I am, you know, because no matter what I do, I feel like I'm not being perfect. So, um That's my journey so far. And I'm hoping that, uh, I will be able to, uh, add add to that

Really? Um, as we go along, so in, in terms of your involvement in in this, um, stuff you Obviously you you it's clear that you feel valued, um, for your contribution to things, even if you you're not confident the contribution is is is valuable. Um, are there Are there other people, um, like yourself that are you're working alongside in this, or is it is it um, yes, yes. In terms of the PhD s, the PhD students have to have at least true, they have to have true, not at least true public advisors working with them

And then these two public advisors have to be added on to the, you know, on the protocol, their names and all that. But, uh, as I said, the GP person who's, uh, doing one of her PhD s. And I'm working with her quite a lot these days

Uh, she's very keen on, uh, co-production and she wants She's very keen on having my name there as a co-author. So that's why she's evolving me with all the stages of her, uh uh, of her research. So, yeah

I mean, um, that's that's important. Um, so yes. With all three other, uh, three of the PhD students, there are two of us

Public Advisor. Now, we don't really, um, go behind the scenes and talk to each other without the researchers being there, because each one of us is actually doing slightly different things. Uh, so one might, you know, they might want not want to be a part of the protocol, or someone wants to do only literature, literature review, or only searching, or only, uh, organising things or checking

Uh uh, you know, for writing and adding anything that they seem to think is, uh is not there. Um, So So, yes, we we don't do a lot of work together, but with my my dad colleagues as a public advisor with the CO, the colleagues, uh, I do work with the other public advisor, and he's got lots of much more experience than I do, actually. So he's been doing lots of, um, uh, work with me behind the scenes

Uh, and I also have as public advisor. I've got a, uh, a mentor who's a public advisor herself, and she's been there for over a year. So she's also, um she gave me lots of pointers at the beginning

Uh, lots of, you know, ideas on how to to do things. Uh, what should I be expecting? Uh, things like that. So that was very helpful for me to to get to know her

Uh, the only daunting thing for me so far has been that, you know, everything has been online, and it would be really nice that, you know, we we see each other so that you know, it's more reality for me in a way, but, um, this is going to happen soon, so we've got a public advisor. Uh uh. Forum

Uh, our next one is on the 11th of July, and, uh, I will be going to the University of Liverpool face to face, to to see the rest of the group. So that's really good. You know, um, the Public Advisor Forum, which is mainly targeting us as public advisor

Um, and there will be, like, lots of, uh, researchers, um, wanting public advisor to trying to, uh, advertise their PhD s to attract public advisor. Um uh, it's been. I think that without the forum, it would have been a bit I would have been more lost, kind of, Uh, but we have a manager who's responsible for all public advisor Co-production making sure that, uh, they recruit additional public advisor

So that has been extremely helpful for me. I think without that, I would have definitely been somehow lost. Um, so and and do you think your involvement in the the research, um, programmes that you're involved with has has made a difference to how that research happens or the the outcome or what? What's the impact? I guess I think it's a little bit too early to say, because all three of them, one of them has been, uh, ill with covid long covid

So she's, you know, like freezing her PhD at the moment. The next, the second one. Um, we've only been working on like, uh, elements such as, uh, forms, uh, interview forms

And so we have. We are still very much at the beginning, but the third one is systematic reviews and searching the literature and scoping. And I'm you know, I'm also working on Ray, which is a, um uh, a software that, uh, all the research is actually there

Uh, so yes. Yes, definitely. She has been extremely supportive in that sense and thinks highly of what I'm doing

Um, yeah. So, so far, I do feel I'm contributing with the third one much more than anything else. Really? Because I'm I'm much more involved with her at the moment, but I think with the other two, uh, it's just a matter of time before we start looking into because I put my name as being involved in all aspects of the PhD research

So this might be a bit of a hard question to answer. So please tell me if I'm not pushing it too far, but, um, in in terms of that third example, then can can you see, um, the potential for you know, the the outcome of of that research being different or being informed more by your perspective, um, than if you hadn't been involved, for example, What I suppose what what value does it add? Um, to the to the research. Honestly, um, as I said, I feel I don't feel so confident in, uh, in my contribution except for tasks that I have to do, but I don't feel, you know, she's got enough knowledge

I don't feel that I'm actually contributing to the outcome. I mean, you know, I might be contributing an idea in the whole project. I might be contributing, like, you know, things

Like something as simple as a spelling mistake or repetition. Or, um, but she is a GP herself. She's going to know much more than I do

Who am I to to come in and say, That's how I feel? Honestly, you know, uh, which might not be the answer that you're looking for. Uh, but, uh, but yeah. I mean, the whole idea is very new to me that the public can have an informed, uh, um, contribution to towards something like that

Now, if it comes to things like, um, my life experiences, uh, in the health services or, um, what I am going through through my health, then. Definitely. I would feel that I've actually contributed to that, but I Yeah, I yeah, I know

I know. It's, uh I'll have a dilemma with this to understand that maybe because I also come from a region in the world where something like this doesn't exist whatsoever. So when I first heard about it, I thought, how could that be? How could a lay person be more informed or, you know, how could they contribute to something like this? But as I'm going along, I can see more of the benefits of this contribution

But I do struggle with it myself. So I do hope that at the end that, um my contribution is not only, uh, uh, time saving for her, because there is a lot of tedious work and what she's doing, and I'm helping her with that. So in that sense, I feel I'm contributing a lot, but contributing to the outcome of the research itself

I'm not sure about that. Sorry. I have to be honest

So no, thank you for that, Patricia. Because this is the stuff that we really, you know, want to understand more of. You know what? What people's understanding or perceptions of of coproduction are beyond just the tasks and then the practical things that that need to be done

Do you think, um, do you think that the way that you've described it, um, having more, uh, involvement in terms of your lived experience? is something that you would want to bring to that If if there was an opportunity to Definitely. Yeah. And I think that is the reason why

Uh, the most project that gave me the most satisfaction was the, uh, library of lived experiences. So, uh, and then seeing other people where they're coming from, uh, what their experiences have been like, Why they're thinking the way they're thinking, what they are adding. I mean, definitely that was I was actually every single time

It was a three hour session every time and every time I was really looking forward to coming to the session. So I was, like, excited and thinking, What are we going to learn this today? What are we going to contribute? What are we going to add to this? Um, so, yeah, that has been my ultimate Uh um, you know, out of all the work that I've been doing that is giving me the most satisfaction. And I do feel, uh, that we are very much contributing

We the lay people are very much contributing to to the research, uh, for the lived experiences, like additional opportunities for something like that. Do you think there's scope to, um, use the that library of lived experience approach in relation to other research. Um, yes, I think it works, actually, Um, I mean, there are some challenges, especially if it's in any public place

Uh, and there are, uh, lots of people coming in, and, you know, it's not 1 to 1, but there are challenges and barriers, but I personally think that that's that is the way That's definitely a, uh, a very useful way of, uh uh, of contributing And then of helping the person who actually needs to to hear the book. It's that mutual thing. The reciprocity is the key word we use

Yeah, I've never heard of this word, but but yeah, I mean, a few years ago, when I was, uh, here in the UK. And I gave birth to my son, I was I was, um, having post natal and prenatal depression. And at the time, if I knew that, there would there would be, um, talking books or you, you know, like, uh, uh, living books, as we say, Uh, I would have been very happy because I actually felt very isolated and all of that, Although I did use the the NHS services to help me

But, uh, just by knowing that other people out there have had the same experience, uh, as a at least for me, I, you know, was would have been extremely beneficial. So because you do feel alone, you do feel that, you know, no one understands and all of that when you're in it. Um, but yeah, knowing what I know now, it's Yeah, it's It's very valuable to have this, um, and and it And it doesn't sound like it's something that's too difficult to to don't no, it's There is a lot of brainstorming, and, uh, it's nice because you go to groups, you know, And then you start looking at different things, thinking about different things and the idea of, uh, listening to other people, uh, saying things is like an eye opener, because I might not have thought that way, you know? And then, with that new idea coming through, you feel that it's opening doors to other ideas and other, uh, similar type of scenarios, you know? Uh, yeah, it's really, really nice

I I very much like that, and I can see the excitement with and other people's faces. It's not just me. This there's something I mean you You're so much more animated when you're talking about that

It's it's lovely to see and but it just it strikes me that the the simplicity of of what you're describing But the power of that human connection, those relationships, Yeah, yeah, and And that and that maybe didn't come across. Although you felt that your contribution to the research in terms of those PhD students is is valuable, that sense of connection or, you know, that the human level of it maybe didn't come across quite as strongly. No, that's exactly you

You pinpointed it all correct. Yeah, that's exactly how I feel. Although I'm enjoying, you know, doing the work that the PhD students are working on and all the other work that is part of the subcommittees and things

But yeah, I think that that is the ultimate, You know, if I have to put them in the pyramids, you know, that's, uh yeah, that's really nice, you know? And then at the end of each session, they brief they brief us on what has been discussed. Uh, what has been So you know you have time to reflect on what happened. And sometimes I was thinking, Oh, you know, I should have contributed more

I should have said this. How come I didn't think of this idea, you know, so yeah. Yeah, and I've met a lot of people along the way

So that's good. Yeah. Gosh, that's, uh it's so good to hear you talk about that library of, um, things library of lived experience, because I've I know of it, but I've not heard it described, um, in in the way that you have today

So, yeah, that's been really interesting for for me. Is is there anything else you want to add? Um, from your experiences. I love the idea that, uh, the public advisors are from all over

So you've got people who have just arrived to the country. Uh, there is a lot of diversity in the public advisor, and I, you know, that makes me feel really good and happy, and, you know, it's very inclusive, and, uh, that's very important. Um, because although some you know, you know, we're coming from different parts of the world and maybe these things do not, uh, exist in our health systems

But coming over here and bringing what we know or what we lack over there is actually, um, I think it's it's important. And then you get to know other people and other people's backgrounds, and that's is very enriching, I think. Hm? I I did have one other quick question, which is to do with, um because you mentioned that that the, um, one of the students that you were working with had spent all the budget that she had does

Does that mean that you get paid for your time as a public contributor or as a CEO? Of course you are. Yeah. Yeah

So exhausted, like nearly half of it. And we we haven't even started. I mean, we started

It's just the beginning, but, uh, because she's adamant on, uh, co-production, she, uh, she's looking for ways and the value avenues of something, you know. So she's saying like, you want? You want us to co produce And you are, you know, encouraging us to do that. Well, give us the money, then

Good. Good for her. Good for her

She She's very adamant, actually. Yeah, that makes me feel happy because she she insists on telling me that it is valuable what you're doing. So so that's good

Yeah. And the the evidence of that is in the fact that they they want to value your time. You know, in monetary terms as well as Yes, definitely

Yeah, yeah, all of them. All of them. Even the library of experiences

I was quite astonished. Like, how could I be paid for something like this When? And it was quite a bit of money, actually. And, uh, not that I'm complaining about, but, um, yeah, I thought, you know, this is something that's, uh I was really enjoying doing so much that it doesn't feel right to take money for it, but, um and it would be it would be interesting in the longer term to, um, explore what the impact of that library of things approach is in terms of the benefits

You know what you described in terms of? Had it been there at a point when you needed it, the difference it might have made to you and and the potential to kind of, I guess, divert people from needing more intensive or expensive, um, support in terms of understanding their own lives or health conditions, or that's true. That's very true. Yeah, No, I I think in January we get back and see the outcome of the first stage, and then we start looking at the second stage

So? So it's a long term project, actually. Yeah, again, Which is interesting in a co-production sense, because you can't just magic things out of thin air. And it does take time to yes

And that Yes. Yeah. Um, so that has been my experience

Really? So far, uh, in the short period of time that I've started with the arc, Um, and I'm really enjoying it because it gives me a lot of flexibility. I've never I've I've always worked full time, uh, from the office. So this is something new to me

So I at least it's giving me some balance in my life. So I'm able to, uh, be there for my teenage kids and my husband and, you know, the house and everything, Uh, and at the same time, being able to do work that's meaningful. Um, and, you know, although not it, it's not on a full time basis

Uh, but at least it keeps my skills intact somehow. So yeah. No, that's That's great

Anything else before I stop? Um, no, it's I I just feel extremely grateful for a for giving me the opportunity to and opening doors for me like that. Actually, that's, uh that's I'm very grateful for that. Really? OK


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