SE2EP15 Peer Research across the pond: a fascinating UK study exposes barriers and bias bolstered by the pandemic
3:09PM Mar 28, 2022
Today you will hear the views and ideas of our Pozcast guests who are eager to showcase their expertise and provide a platform for their views. But they may not always reflect or align with the views of the Positive Effect, or the Map Center for Urban Health Solutions. Welcome to Pozcast, we are created by and for people living with HIV. On each episode, we explore what it means to be Poz. We challenge the status quo, and we share stories that matter to us. I'm James Watson, and I'm HIV positive. If you're living with HIV, listen up.
In the UK, peer research tends to fall under what we call patient and public involvement. And within the UK, there are standards for practices for good involvement, and that includes co-production, which is what peer research would fall under. However, based on the kind of literature that I've read, I think it's quite advanced in certain health research areas like mental health research, research with young people and also aging research, but there doesn't seem to be that much in the HIV field.
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Today, we take Pozcast international to chat with two fantastic guests about peer research, and an exciting qualitative study out of London, England, focused on the COVID experiences of people living with HIV. Anyone who listens to this show knows I have a bit of a passion for peer research. So I'm excited to speak with our guests about their approach, as well as a peer researcher training resource that was developed and is available free online to anyone who wants to use it, especially academics and public involvement practitioners who want to train people with lived experience to become co-researchers or peer researchers in qualitative and interview based research studies. Vas Papageorgiou is a PhD student in the Patient Experience Research Center in the School of Public Health at the Imperial College London. Her research explores the impact of social determinants on the health and well being of people living with HIV in the United Kingdom. This is also a valid first time working with peer researchers. So I'm excited to hear about her experiences and to get some insight into the state of HIV peer research in the United Kingdom. I'm also going to be speaking with Husseina Hamza, the co-founder and director of a volunteer-led community organization for people living with HIV and affected by HIV called Red Ribbon Living Well. She's been a community advocate for 15 years working across many areas, including sexual and reproductive health, mental health, female genital mutilation, and domestic abuse. And in addition to all this difficult and important work, Husseina is now working with Vas' research team as a peer or co-researcher of the qualitative COVID Project. Vas and Husseina Welcome to podcast. Welcome to Canada.
Thank you very much for having us.
You're very welcome. So Vas, can you, you know, we've been chatting for a little while now about peer research and the work that you're doing. I think it's been, I don't know, maybe a year or so. Could you give us a quick overview of the study and why you decided to focus your studies on the health and well being of people living with HIV.
Yes, so my PhD is really driven by how social determinants, so things like employment or housing, how they can influence people's health and well being, as you said, I decided to focus on this area because as we know, the UK has very good HIV outcomes. So in 2021, the UK reached all of the UN AIDS 95-95-95 targets. However, there are still very high numbers of people who are diagnosed late in the UK, and people who are not virally suppressed, and the issues relating to mental health still remain a concern. And these concerns have only grown during the pandemic, which is why I was interested in looking at people's experiences during the pandemic in the UK. And it's how I met Husseina.
Oh, fantastic. And so why was working with people living with HIV as co-researchers, you call them co-researchers, right? Peer researchers here. Why was that so important to you?
So it's probably based on my background. So before I started my PhD, I worked in public involvement for a cancer charity and working with people affected by cancer and helping to shape the charity strategy and various projects that were going on. I also teach on a participatory approaches to public health module for master's students. And as part of that I began reading quite a lot around peer research. It was quite a new area for me and falls towards the higher end of Arnstein's ladder. I don't know if you're familiar tith a ladder of participation. So, Arnstein's ladder of participation really starts, so at the bottom of the ladder would be sort of coercion or involving people in not necessarily, in more of a tokenistic way, in research. Whereas at the top end of the ladder is what we're all aspiring for is having people with lived experience really leading a research project. And all the kind of public involvement I'd done previously had been more around consultation or advice. And I wanted to move towards the higher end of the ladder, where I could give the power of driving a research project to people with lived experience, which is why I decided to implement this into my PhD.
Oh, fantastic. Now Husseina, you, I mean, you have a an impressive amount going on in your life. You're an advocate, you run a volunteer-led community organization, you're a mother. A mother of how many again?
Five. And six grandchildren.
My goodness. And you're an immigrant to the United Kingdom, you've accomplished a lot. So could you give us a quick overview of your background and and why you decided to take on this role as peer researcher. What intrigued you about the role?
Thank you so much, James. Starting off with the background as myself, living experience, and through that journey, actually have been coming along, from my experience, and from the people who I support. And we look at is we are individual, but something that we share in common. And through that journey, actually, every individual have their own challenges and difficulties. And looking at my background, how I came in, being in a country, immigrant, culture, religion, all of those kinds of things were very, very difficult. So looking at the way of integrating in the community and feel part of being in the community is to engage with other people around the community to understand. First is to understand how can I fit in this community for me actually to have that confidence, and empowerment and skill to be in the society? That is number one, as I say, I came, I was not speaking English. But one thing is to learn English.
That is that, yeah. Through that, taking on voluntary work. And that volunteer work is what took me to where I am today.
And so that in that engagement, did that draw you to the role of peer researcher of co- researcher, engaging with your community like that?
Yes, engage with the community, because when I saw that, the researcher is for people living with HIV, I am living experience. And I want to know about this, during this COVID, the people I support as I work most of the people, I work are immigrant, and through that, some have status, some don't have status, and how difficult when I saw this research, and I look at it, it cover everything about the treatment, the hospital, the financial, you know, the integrating the community, all this actually, and I have experienced, and when I look at this research I say, I can share my experience, but not only me, I can bring even from the people who I support to this research. It was an opportunity that I grabbed it to be part of it. I have been actually, people come in to interview me, but this was an opportunity for me to take that train and interview people.
Right, right. Oh, fantastic. Okay, so Vas. So I'm always very intrigued by models of peer research in Canada and other countries. I'm no doubt biased, but I, you know, I feel like we've got it going on here in Canada, that peer research is fairly advanced here. And I'm just wondering, would you say the same in the UK? Can you just maybe give our audience some context around peer research or patient oriented research in England?
Um, yeah, so I would say in the UK, peer research tends to fall under what we call patient and public involvement. And within the UK, there are standards for practices for good involvement, and that includes co-production, which is what peer research would fall under. However, based on the kind of literature that I've read, I think it's quite advanced in certain health research areas like mental health research, research with young people, and also aging research, but, there doesn't seem to be that much in the HIV field, although there are some projects, they tend to be more based outside of academic institutions. So within community organizations, for example, which is why I came across your work, James, and the fantastic work that's going on in Canada and thought, well, this is a model that we should really be aspiring for. But obviously, that does come with its challenges, because it's not so advanced in the academic setting.
Yes, for sure. I mean, it's interesting, because we, I mean, we ground all of our work in the GIPA/MEPA , the greater involvement of people living with HIV, and then meaningful engagement, like the UN principle, which is international. And it's interesting that, that hasn't really, isn't really happening in the UK. Is that really is that talked about, is it utilized?
I think it is talked about, but I think people from other health research areas are probably more familiar with the National Institute for Health Research who have their own guiding principles for public and patient involvement more broadly.
Oh, I see.
There is specific guidance around co-production, and I think that shares some of the principles that come out of GIPA/MEPA. So things around sharing power, reciprocity, things like that. But, I wouldn't say it's necessarily as commonly used as the NIHR principles.
Right. I know you, your PhD research is broader than just this one research study, right? Do you plan on utilizing peer researchers or co-researchers in your other work as well?
I would like to, I'm quite limited at the moment, because I am now in my final year. But I am hoping, because I am writing that at the moment, um we're thinking more about how we share the kind of knowledge of working together and what's come out of our research findings. So I'm hoping to involve my co-researchers in the elements of writing at the PhD, although obviously, it's not in the most accessible form. So this is why we're starting to think about more creative ways of sharing research outside of the academic world as well.
Right, right. And Husseina, have you worked as a co-researcher before?
No, actually, I just want to pick it up from Vas is she say she's a PhD, and she's doing this work. So through my experience, actually we have been people like Vas just come to us, they have already put everything the question and everything and come to us, oh, we are doing this research, I'm doing PhD, and I want to come and interview you. But for us, it was actually different because before she go further with this research, she look who can I work with, and she find people like us who are living experience, and put us together and ask the question, how are we going to, what question you think is gonna be the right question to ask people who are living with HIV, you know, so we help we work together with Vas and I'm sure maybe hopefully, there will be someone like actually kind of look and explain what Vas had done and take it that way to do research and work with people with living experience.
Yeah, that's, that's so important. It's so exciting. Do you think that there's room for that kind of growth Vas, with peer research?
I think so. I do feel there are definitely some challenges, as there always as when you're involving members of the public in research, particularly based when you're going through the ethics process. I think if your ethics committee, isn't that familiar with participating approaches, it can feel quite frustrating to have to, obviously, we know that peer research can be quite iterative, we might want to change how we do things, we want to be as open and transparent as possible with our co-researchers. So it's having to almost negotiate that as a researcher. It's, it's an interesting challenge, I think, especially if you're quite early on in your career. It's definitely taught me quite a lot.
Right, yes, I mean, at one point, the University of Toronto here had a separate REB, that would review HIV protocols, which was very helpful. What changes do you think need to be made around peer research?
I think there needs to be, I think maybe people are quite nervous about approaching pair research that maybe it needs to be a bit demystified as to what it is and what it involves. And I'm hoping our training kind of provides people with the opportunity to see that actually, it is possible to do this work, but it definitely requires quite a lot of resource and I would say also experience. I was quite fortunate. I worked with a team, where so, the Patient Experience Research Center, our whole ethos is really around encouraging participatory approaches in research. So I already had the buy in from my supervisors from people that I worked with, with lots of experience. And maybe someone who's coming from it quite new, would need a bit more support. So that's what, our center kind of helps other researchers to do different approaches. So I think it's definitely around resource. And also, again, it always comes up funding, we applied for some additional funding through the university. They had a specific fund for COVID related research. And now they've actually set up a separate fund for participatory research, which is amazing to see, but I don't think it's necessarily available for all researchers based outside of our institution.
Right, right. I guess one of the biggest obstacles for peer researchers here is job security and equitable, you know, financial considerations. Because some people, it's a career for peer research, and some people have government supports, and they use peer research to supplement their income. So I'm wondering what, what the pay structure is like for peer researchers in the UK? Like, are they paid by the survey, by the hour? What's the wage like?
So again, we use the National Institute for Health Research have payment guidance that they offer for all types of patient and public involvement. And that tends to be based on the level of involvement. So it could be by the hour, but it also considers whether people are reviewing the number of pages, people are reviewing whether they're taking a half a day out of work.
Right. So taking a half a day out of work, are they considering this, this isn't work?
Well, for some people, some of our co-researchers have a full time job. And we're doing this in the, so we always would meet in the evenings. But others they might be volunteering and also doing peer research, it's quite difficult because depending on what which university you're at, so ours were set up through an MPF form, I can't remember what it stands for. But it was a slightly different way around paying people. And that also raises the issues, like you mentioned around people receiving benefits from the government. And Husseina can probably talk a bit more about this, but it's something that people can put people off to getting involved in peer research because they are worried about how it might affect their benefit payments,
Right. Yes. Husseina would you like to add to that?
Yes, it's true what Vas has said. So some people can be yeah, because they are receiving the benefit. And if they take a research, for example, to myself, I was just getting them because when I got this into this, I was just made redundant. And this came up and I look at it, okay, as a volunteer and maybe there's an opportunity for a job. And I did some work with Vas and after University of Manchester until now I haven't claimed that money because I'm fear if they see this, this amount of money coming in, they stop your benefit and you fear, how I'm going to survive, you know, I have to pay rent, I have to pay I don't have any money coming out. And as far as say add to the money, which they are trying to get to do this research is not enough money to pay someone actually like a salary, you know, it's about the time you're doing and they are trying their best actually to pull that even that money maybe we could not be receiving it. They will say yeah, you are doing research with these people. That is their research. Okay, there are people they just sharing our experience, but they don't know our to the effective of us in that reason a bit people to find out no, I don't want to participate. If I caught doing this, my benefit is being cut. So it's very very difficult.
Yeah. Oh, yeah. I mean, these challenges are international, it seems because it's important work. And here, they would just clawback really all the money you're making. You're allowed to work, but they'll, they'll take it off. So you know, you're really no further ahead. But it working under that kind of worries is a real challenge.
And therefore that if we are doing this we're giving a skill and knowledge for these people to know what is going on for themselves up to feel that I done something. Yes, I can't work maybe I have this all this comorbidity, I can't work but I did something to participate through my organization or my my health. You know, this is my health. And this research is me. So I'm telling you, what is going on. Today it's me, you're gonna meet another person you already know, okay, this person is going through that. But we have clear information here.
Yup, your lived experience is expertise, right. That's very necessary. To make these these studies happen in a good way. Yeah, it's challenging isn't Vas to to work within these constraints. But it's good work. Right?
Yeah, and it's important. So you find there are there is some advice out there about involving people who are receiving benefits payments through again through the NIHR. That kind of body. So I would if anyone listening is thinking of doing this and is based in the UK, I would recommend going through the resources that are available, because it's definitely something to consider. If you want to involve if you want to make sure that your peer researches as are as diverse as possible, which is what we're all aiming for, then you need to be aware of this potential issue that might come up.
Great. That's great advice. So before we sort of get into the actual study and the data and things like that, I just wanted to quickly ask you Husseina and Vas, what you've learned about yourself doing this work? Maybe I'll start with you Husseina.
Okay, for me, what I have learned at, first of all is I say, I didn't have any knowledge or skill of doing this. And one of the beneficiary is I was involved from the beginning. I got skill. It helped me for other work. I'm on the board of my Housing Association. I am a voluntary actually at THT. I was selected to interview actually, there was a background at THT to interview the candidate, and I was on the panel.
Oh, that's fantastic. When the training can translate into something broader. That's great. So Vas, what would what would you say? I guess I'm trying to get personal. But what would you say have you learned about yourself doing this type of work?
I think it's that I am quite a perfectionist. So I tried to when I was planning, or designing the project, I was trying to think of every potential possibility of something that might happen and tried to plan for anything. But I obviously quickly realized that unfortunately, some things can be completely out of our control. So it's definitely helped me kind of adapt my way of working. I think also probably because it was happening during the pandemic, it meant that I had to, you know, adapt my approach quite quickly think a bit more iteratively about how I'm doing things. Also, just like building connections online, like I've never met any of my co-researchers in person, which is crazy. But we I think we built a really great friendship together as a group. And hopefully now things have eased in the UK, we will be able to meet in person. And also just to say like the project, the the way in which the project was set up and how we work together, it really taught me that, for me, personally, to remain motivated as a researcher, I need to work with people. I'm not the kind of person that can completely work in a silo and, you know, do my research and publish it out into like an academic journal. I love working with people. So yeah, just reinforced that for me.
Right, that's great. Yeah.
And you learn something from us from each individual.
Exactly. Wow. So let's talk about the study itself. So what is the purpose of the study?
So it's in order to, for us to capture the experiences of people living with HIV during the pandemic, we looked at lots of different things. So that included people's experiences of accessing HIV services, but also the impact on their personal life, their working life that they were working, and some of the social determinants that we mentioned earlier. So things like housing and, and income, for example.
That's so, so relevant. I mean, there's, there's a lot going on right now. And there are three stages to this work, right. Could you just briefly give us the three stages?
Yeah, so we started the work quite early on. So we started it in June 2020. And that's where we ran a community involvement event with Positively UK, who are our collaborators on this project. So Positively UK are a peer-led support charity, who we worked with, to run a Zoom call in June, where we wanted to gather quite quick insights as to what the challenges and opportunities COVID posed for HIV care specifically. And at this call, we had people living with HIV, we had allied health professionals, clinicians, charity workers, and we developed an insight report from that, which was used to then inform the topics that would come up in the qualitative based study. Positively UK as I mentioned, one of my colleagues, Jane is a trustee for the charity so we alreadly had a connection with them. And they facilitated breakout rooms during this Zoom call. So that was the first stage. And then the second stage was where we interviewed healthcare workers and community based organizations. So we kind of testing out the topic guide that we developed from the Zoom call. And then from that we applied for funding to do the peer research work, which is what Husseina's been involved in, where we looked at specifically experiences of people living with HIV, although some of the people we spoke to in the first and second step, were also living with HIV as well.
Okay, so the key findings, I mean, let's go there. What kind of findings are you getting? Was there any surprises?
it was kind of what we expected in that we knew that the services had adapted quite quickly during the pandemic, and that for most people living with HIV, it was quite acceptable to have consultations for example, online, or for delaying some of their monitoring appointments until it was safer to come in person to, for example, take their bloods. Some of the maybe other things that we expect to see in that people were quite the kind of government guidelines and restrictions around socialising, for example, had had a negative impact on people's mental health. And people who were already quite isolated and lonely, only experienced this more during the pandemic, but something that we found, which was quite positive was that how community organizations had really kind of came up with innovative, innovative solutions, and to overcome some of those challenges. So some organizations were aware of digital poverty and digital exclusion being an issue, so would provide their service members with laptops and tablets, they would deliver food parcels or supermarket vouchers so that people were still able to, so people weren't experiencing any sort of food insecurity. And also, again, I think the timing of the interview, so for the study that Husseina was involved in, we did the interviews in the summer of 2021. So this is obviously about a year after the pandemic had happened, people were quite obviously adapted to the fact that we'd gone in and out of restrictions. And at that point, when the interviews were happening, restrictions were actually starting to be eased. And there was a thing called Freedom Day in the UK, where they were kind of removing all restrictions on the 19th of July. And we heard from people about how uneasy that had left them feeling. And some people have decided to shield throughout the pandemic, even though they've never actually been told to by their clinician, and they were really worried about how the easing of restrictions what that would then mean for their daily life. I don't know if you had similar the shielding list in Canada or not?
I don't know, I was gonna ask about the shielding, do you, I'm not sure what the shielding means.
Um so there was an algorithm that NHS digital, so the National Health Service had set up through general practitioner records, to identify people that they thought were clinically extremely vulnerable and should therefore limit all social contacts, particularly at the kind of peaks of the pandemic. And at the start of the pandemic, people living with HIV were mistakenly put under that list. So some people received letters to shield even though they had an undetectable status.
Like you have to stay in your home kind of thing?
Pretty much you're advised, strongly advised to not see anyone to, you know, have all your food shopping delivered.
Oh my God.
Yeah. So we're really lucky in the UK that we have the British HIV Association, who really advocate for people living with HIV. And them alongside some of the charity organizations actually wrote to government to say, people living with HIV do not need to be on this list. If they're virally suppressed, they're taking their medication, then there isn't, they're at no greater risk than anyone else. People living with HIV then was kind of taken off the shielding list. But you know, some people were obviously on there for other reasons, they might have had other comorbidities which had made made them at slightly higher risk of having a poor outcome if they got COVID. But that definitely caused a lot of confusion and also worry at the start of the pandemic for people living with HIV here.
Yeah, I bet I bet. I see you nodding Husseina about the some of these impacts and some of these results. What was it like to interview the participants? And what kind of feedback were you getting face to face or I guess, online face to face?
Yeah. Like, Vas has said that how people were confused about shield. Some of them actually took it serious that okay, I can't go out, I have to stay. And then some of them will say no. Why do I need to shield? You know, the way it was confused for for many, many people.
So, so what other findings would you think would be in the top three, Vas.
I would say also around mental health, you know, the issues around isolation and loneliness that people were experiencing. Some people were accessing support groups, others had decided that they didn't want to, I think COVID although we think we do see technology as potentially being a barrier, it does also provide an opportunity for people who were living in remote locations of the UK who might not necessarily have been able to travel to visit a support group because they lived too far away, they were now able to access this online so that was definitely an opportunity that came through. And what also Husseina touched on just now around issues around confidentiality and privacy, people being unable to or feeling unable to take calls at home, because people they're living with don't necessarily know that they're living with HIV, or feeling uncomfortable within the work setting, because they don't want to share their status with their employer. But they're asking why they, you know, they why they need to shield for example. And also, I think, what a lot of people often ask me about this research is do people make comparisons between COVID and the early days of HIV? And that did come up in our interviews, we did have an actual we had a specific question around whether people had experienced anything like this before. And of those that were diagnosed quite early on in the 80s and 90s, they did reflect on, you know, some of the experiences that they had then and how they related to COVID as well.
That'd be interesting to hear about those experiences. Yeah there are some controversies around that comparison, right?
I think, yeah, those the question were coming through the conversation that if HIV was the same thing like COVID, maybe by now we could have a cure for HIV, it was just put as individual people who they want to live their life, and it was only for gay people, or Black, African, you know what I mean. So some of the top government wherever they didn't take it serious to look at this until after the activist came up and say, enough is enough. We need to be recognized, something had to be done. And that is actually it was taken actually now serious. And the other thing we just came up through that this COVID is about appointment in the hospital. Because some of the people they were kind of finding difficult to access appointment, especially a GP, you know, and some of them actually were kind of fear of going to the hospital to access their treatment. Because if they go the fear of going to the hospital, that was the other problem. And the people actually who are living with HIV every six months, they have to go and collect their medication or do the blood test. Some of them they are kind of no, I don't want to go to the hospital if I go there, I'll catch COVID. So it was very, very difficult.
Yeah. Okay, so let's change gears a little bit to wrap up. I wanna talk about the peer training resource. What spurred you to do this Vas and why?
Yeah, so at the start of our project, we wanted to identify what skills and knowledge our co-researchers already had, and also the kind of skills we thought that they would need in order to undertake this work. And we initially planned to actually run two a two day training course. And then we quickly uncovered that that would be incredibly draining for everyone. Because I think we were also at the point in the pandemic where everyone was experiencing Zoom fatigue. So we sat with the group, and we said, okay, let's split this up into four training sessions. And we're going to cover all of the key areas that you'll need in order to take part in the study, and also the areas that you want to develop skills in. We kind of spent quite a lot of time putting it all together. And we spoke with people with a lot of experience. So we obviously spoke with you, James, we spoke with Bekita, who's another peer researcher who's done some work, people living with HIV and gave us really good advice around what the training should look like what it should cover. And we designed it in a way so that could be delivered online, but we were also conscious of making it as interactive as possible. So splitting up the session into, you know, some interactive quizzes, some icebreakers at the start to get to know each other um and also discussion points throughout. So it wasn't just you know, looking at loads of slides the whole time, we were also having a conversation face to face. After we put it all together, we realized it was probably a quite helpful thing that other researchers or other public involvement practitioners might want to use. And there wasn't really anything like it, per se. There were kind of you know, there were other kind of guides on specific areas, but there was nothing kind of bringing it all together into one place. Um so we then sat down and as as a group and kind of adapted it so that it could be personalized for people working on all types of health research areas, and they could pick and choose which which parts they could they'd want to use in that project.
Yeah, it's really pragmatic and comprehensive. It's great. Yeah. So where could it be found Vas?
So it's hosted on the Patient Experience Research Center's website. Um and it's as you mentioned at the start, it's free to download and we've included guidance a user guide of how to use it and who it's made for. And also like if people want to give feedback as well my details are on there as well.
Okay, great. So just to wrap up I always end the show with five rapid fire questions, this or that questions. So let's dive into those. We'll start with you Husseina. Win the lottery or land your dream job?
Land my dream job.
Okay, same question to you Vas.
Land my dream job.
I'm win the lottery all over it. I'm all over it. Although I'm not playing. Time machine, Husseina, time machine or magic wand.
Magic wand. Vas.
I think time machine. I'd quite like to go back to the 1960s maybe well experience what it was like then.
Fun. Okay. Husseina logic or emotion?
Wow. Oh, can I put myself can I remove an emotion and logic? Yeah.
Okay, Vas logic or emotion?
The academic in me wants to say logic, but I'm definitely more emotion.
Husseina messy desk or clean desk?
Um, messy desk.
All right, Vas.
Um you can't see my desk now but it's pretty messy.
And final question Husseina. Work from home or work from the office?
Can I say both?
Blended, there we go. That should been one of my this or thats. Blended, yes. Thank you. Well, thank you both very much. I appreciate you coming on Pozcast. And I wish you all the best with your research and with peer research.
Thank you so much for having us.
Thank you so much. And I hope to see you again.
That's it for us this month. Thanks for tuning in. We hope you'll join us next time on Pozcast. And if you have any comments or questions or ideas for new episodes, send me an email at firstname.lastname@example.org. That's the number four and the letter U. Pozcast is produced by the Positive Effect, which is brought to you by Reach Nexus at the Map Center for Urban Health Solutions. The Positive Effects is a facts based lived experience movement powered by people living with HIV, and can be visited online at positiveeffect.org. Technical production is provided by David Grein of the Acme Podcasting Company in Toronto.