S2E9 Peer Reachers: Let's get real (Part 1)_08-25-2021

8:27PM Aug 23, 2021

Speakers:

James Watson

Lynne

Tim Wesseling

Kim Samson

George

Michael

Keywords:

lynne

peer

pra

research

hiv

people

tim

job

researchers

community

role

researcher

feel

disability

research assistant

experience

work

ontario

question

part

Today, you will hear the views and ideas of our pozcast guests. We 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 the 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.

Today on pozcast, we're going to take a deep dive into the role of Peer Researcher or Peer Research Associate. Now, the job title itself isn't without controversy, but we'll get to that. So Peer Research Associates or PRAs are community members living with HIV or AIDS, not accredited in research, but trained by the research teams to work in one or multiple phases of a research project. And this is a position that's held in very high esteem in HIV community-based research. And it comes with some high expectations from all parties. But does the role deliver? That's the question here. In this two-part series, we're going to take a closer look, a hearing from a number of peer researchers and researchers from across Canada. I'm really excited about this episode. And so grateful to all my guests and PRA contributors for expressing themselves so candidly. We have to have these challenging conversations if we're going to make positive change.

You know, this whole experience of putting the show together, it makes me—well it makes me a little bit emotional. My first job in research was as a peer researcher, and I can honestly say that the role and work not only changed my life, but saved my life. I came to understand that as peer researchers, we were central to the success of the work we were doing, that my lived experience as a person living with HIV was for the first time valued. My experience was considered expertise. And I soon discovered that the common experience of living with HIV, regardless of race or ethnicity, gender or culture, or any other social construct, was a shared life experience of profound importance to me. I was home. The peer research has evolved, and everyone's experience is different. There are practicalities to consider, food to put on the table, bills to pay, you know. Is the personal fulfillment you get from this role worth the precarious employment? So to help us sort through all of this and more, I had the opportunity to speak to two standout peer researchers, Lynne from Ontario, who's worked on numerous large scale HIV community-based research projects, and Tim Wesseling, who's a peer research associate at the British Columbia Center for Excellence in HIV and AIDS in Vancouver. Hi Lynne. Hey, Tim Thanks for coming on the show today.

Hey, James. Thanks for having us. Hi, Tim.

Hey, James. Hey, Lynne. Really excited to be here.

So we have a lot of rich peer researcher and lived experience around the microphone today. And I've been really looking forward to this conversation, so let's just dive right in. I've asked several peer researchers across the country to record their responses to a few questions I've had about the PRA role. So let's start a conversation by hearing from Kim in Alberta, and I'll get your reaction.

Hi, my name is Kim Samson. I've been a peer researcher for the past four years, I've worked on a few different projects with community-based research out of Calgary, Alberta. I enjoy working as a peer researcher, because I want to help eliminate the stigma and discrimination that people living with [HIV] deal with every day. I know a lot of people living with are not living to their full potential because of the stigma monkey on their back in their minds, and from the public's lack of knowledge of HIV.

So Kim highlights sort of an altruistic motivation for wanting to be a peer researcher. She wants to help. And I've heard that from a lot of peer researchers, and I'm wondering if I can get your take on that, Tim? Like, what drew you to peer research work?

Great question. 100% is about giving back for me. My story was, you know, not being connected to the community, falling out of health care, and then finding the community that brought me back, organizations that linked me to volunteering that ended up giving me a position as a peer researcher, and I feel like it is upon me to help others. And do things that help connect people that, you know, make research about us for us and improve access to health care.

Right. And so do you follow the same line of thought there, Lynne, with your approach to research?

I always feel bad when I answer this question, because I never sound quite as altruistic as everybody else. But honestly, I started this job because it was a job. A friend of mine who lived in Kingston and I saw this job posting through the Ontario HIV Treatment Network for peer researchers, and we just decided that we were going to apply. And so we went through the whole process of like sending in resumes and doing follow ups and doing interviews and waiting. But for me, in the beginning, it was a job. I hadn't had a real job in 10 years and like money, it was money. It was the probe. Yeah. And it was only until I had been in the job for a while that other benefits became apparent to me.

Do you think you're making a difference in the lives of people living with HIV, Lynne?

I think I am, I think enter in maybe in a more roundabout way, most of the time. I think that the research that we contribute to and are part of and make happen, I think creates change for PHAs. I'd like to think and I hope that like having the opportunity to talk to someone who knows—who has lived experience and knows where they're coming from, makes a difference in their life. But from my point of view, I think the biggest thing is being a part of the research, and the research creating change.

Right. What about you, Tim? Do you think that you are making a difference in the lives of people living with HIV by doing what you do?

When I started doing this job as a peer researcher and doing interviews, I never knew that that's what I might be doing. I was providing a safe space for people to come in. And for, you know, for us to collect the information. As that changed, I found that I was being invited to be part of different roles in the research process, designing research questions based on my own feelings and my own experience. And I was able to present some of these ideas at you know, the Canadian Conference on AIDS—the CAHR conference. And I went out and I presented some of these ideas at a, you know, local, AIDS service organization. So I feel like I am making a difference in the in the lives of people living with HIV by sharing my experience and really being involved in the research. So it's more, it's applying more directly to my community, from my eyes, through my eyes and through the eyes of our community.

Right, right. So I just want to get your take on what George says another peer researcher.

Hi, my name is George. And I've been living with HIV for over 20 years. Along with that I've been homeless, I've experienced a number of different experiences in my life, which led me to become a peer researcher. Why did I become a PRA? One of the reasons for me was a little bit of a selfish reason, because I get to learn from other people, I get to hear other stories, I get to encapsulate them into my own life experiences. And I also get to share my life experiences with other people as I speak to them, also. So it becomes a two way highway of thoughts, feelings, emotions, and it helps I think, both parties, because they're not alone, I'm not alone. And we learn how to deal with what's being discussed, we learn how it's impacting us in our lives. And for me, that's important because it helps me become a better person. It helps me in my daily life. It helps me learn what can I do in the future also, and how I feel that I've helped somebody by telling them my lived experiences, my experiences of what's happened to me and how I've overcome any social or economic challenges within the time period.

So reflecting on what George said, Lynne, what's the value of the peer to peer interview experience?

I think it almost immediately when you sit down with a peer there's like a sense of a deep breath, a deep breath and a relaxation that like it doesn't matter what I say the person I'm talking to understands what I'm talking about. The little codes that we speak in are okay, you know, I'm in a safe space. And I think that all the PRAs work really hard to create safe spaces for their participants to be able to share. Because a lot of times, like a shockingly large amount of times, you're talking to people who have no one to talk to, and who have no one to be 100% honest with. And it's like, it's just such a, like a releasing breath to be with someone who understands.

Right. Would you agree with that, Tim?

Yeah, I would agree. I mean, providing the safe space is just—is the basic thing that we do, whether it's in an interview, or you know, during a presentation. But what—in terms of what George said, I am peer, but I have my own story. The person sitting across from me are the other people, they also have their own story. And that adds to the richness. And I feel like as much as I can share my experience, and hopefully somebody will gain some insight, I'm also doing that at the same time. And I feel that has also improved my life and I've learned some things and some tricks and whatever. You know, living in addiction, I could not do that alone living with HIV, I could not do that alone without hearing stories or sharing these experiences. So this is what's happening exactly while I'm with participants in the study.

Right, right. So what do you think is the most important element of the work you do?

I think the most important element of the work I do is just connection. I am providing connection to the participants in the study, I'm providing that connection to, you know, the research team, I'm representing the team, and I am the liaison. Because I understand it—I get it. And I worked with researchers and you know, I shine the light on something that they've never even considered, which has made me feel strong, because I never felt that I grew up with a lot of skills in my years of not working, living with HIV. And I have these skills. And this is what I'm bringing.

Right. So do you think most investigators on a research team also see this connect—your connection to communities being the most important quality of the work?

I think I think it's one of the quality—one of the things for sure, because I know I have some eyebrows have been raised when I've been able to sit in a data/analysis sort of meeting and I'm sort of the token peer, but then I'll say "hmmm..." this and this, and they are surprised to see what I am bringing.

Right. What do you say to that, Lynne? What is the most important element of the work that you do?

I think that actually Tim hit it on the nose. I look at it in a little different angle, but I think that the connection is the biggest thing. I see us as conduits or bridges between the community and the academic researchers. And that it is our responsibility to bring as rich and as full data as possible to the researchers in order to respect the participants' stories and the participants' experiences. Because even if we're asking like quantitative questions, there's a story in there somewhere. Someone's story is reflected in those numbers. And I think it's really important to treat those those stories and numbers with respect. And how I treat them and how I present them to to the primary investigator or whoever is a crucial part of the process.

Yeah, thanks, Lynne. I totally agree with that, but I think aside from what we do as a participants and relating for the participants experiences to the research, I think we also are there to represent other peers in terms of the role of the peer researcher to strengthen and guide researchers and what value we have and how we need to be included in all parts of the research. So I think it's also we need to be helped help steer what we we as researchers are doing.

Right. And that's, I wonder, you know, often like the meaningful engagement part of the work that you do often falls to the peer researcher. Constantly sort of advocating for your own engagement. Does that get tiring?

I think, I think that a lot of times—going back just one step. I think that Tim and I have different experiences coming from different provinces and working with different primary investigators. So it sounds from what like Tim is saying that our experiences are different, and maybe the way we look at things are different. But I found that there are a surprising number of peer research, or not peer researchers, but primary investigators who say that they're invested in MEPA and GIPA, and like value peer researchers, but I don't think they actually do. I think that what they see is an opportunity to have community input, but they don't recognize like how strong we are and what potential we have to help them. I think that there are a lot of people who unfortunately don't see that. So sometimes we're involved in projects where we are just tokens, and it's like, you know, data collectors. And I've been lucky, because the majority of my experiences have not been like that. But I also think that's because I've always worked with really strong peer researchers who have very strong voices about what they want to be involved in.

Do you want to comment on that, Tim?

So you first were talking about, you know, is it tiring, you know, to be in the position we are with, with researchers, and I do feel like things are very siloed. I'm just in my position in my study, and I don't feel I have a lot of connection or awareness to what Lynne's doing, to what other peer researchers are doing and different studies across—and I think that there is something that I've been—it's a bit of back of my mind, is trying to create sort of a peer alliance. I feel like we need to sort of get together, learn from each other, support each other if there needs to be more fighting to get a, you know, a standardization of what a peer is. I was sitting just recently on a peer reviewer for the Canadian Institutes of Health Research on community grants, snd what I noticed from the from the different grant proposals was different ways that they included PRAs in their proposals and how they valued them. Some people would value them really well and pay for the services, and then other things was just sort of token thank-yous or whatever. So there really is not a really defined role of what a peer researcher is in Canadian health research for HIV, and that is something that I really think needs to be strengthened and looked at.

Do you think there should be like a commonality across provinces, like this would be some sort of like a union or something like that?

I totally—I like a union or alliance. And I think they're, you know, there should seem to be a base understanding or value to what we do, or how we are, you know, how we are paid how we, you know, get contracts or, you know, all these aspects of what it is to be a job as a peer researcher. And including the flexibility that needs to be around there for working with peers, I think should be really evaluated and studied, for sure.

How do you feel about that, Lynne?

I wouldn't be afraid that that would take away from the peer part of it, like we would become professionals. And we all I think, have lived through times where like, agencies have professionalized and roles have professionalized, and I'd be afraid that that would take—that would happen to us. I think it's a good idea, but I'm a little wary about it.

What do you mean by professionalized?

I think that we'd have like a job description that we couldn't get out of. One of the things I really like is the flexibility of what we can do, depending on who we're working with. And the fact that we can make decisions about who we want to work with a lot of times. I know that I've worked with some researchers that I wouldn't work with again, and I've worked with some researchers that I absolutely, like, would be the first knocking at their door saying, "Pick me Pick me." But there is something about the fact that we are not professionals, that we are part of the community, that I think makes us kind of conduit. And I worry about leaning too far one way, if we became unionized or...An alliance I could see as one thing like, coming together and learning from each other, because one of the things I find the most fascinating is how each PRA has their own interpretation of like, what is important to them, and what is the most important aspect of the role. And I think if you brought everybody together and discussed it, it would be an incredible conversation.

You know, it's interesting, as a peer who you are as a person matters. Like how you are a peer to others, your peerness, is your currency in a way. So can you speak to how it feels to use your identity as a job qualification or as a commodity in order to get work, Tim?

As soon as you said my identity, I was thinking about moments when I've been a peer when I am telling my story. And I feel like that has come across in so many aspects, when I'm sitting with a participant, when I'm relaying just something to, you know, the study coordinator, or when I'm doing a presentation, I get very, very emotional. And this is—I feel like this is, this is my currency. This is the part that is maybe missing in research, is the connection to people's experiences. And it's something that I'm—I have no control over and I have a box of Kleenex is with me now—because it is something that when I do try to make a point, and it is very personal to me, you can see that and I think that this is something that we as peers do.

Right. Is that something you give generously, or if it's something that is taxing on you?

It is, it's hard, because— I'm even feeling it now—I just worry that, you know, sometimes, oh, I'm just like, I'm taking up these people's time and they're, they're looking at me crying and whatever. But it's like, you know, I have never gone through one of these things, or a moment or presentation where someone has not come up after and said, Thank you for doing that. Because I think—and that is when I feel accredited for what I'm doing. I feel like this is why I'm here. You know, and so I keep doing it, and it won't tire me out.

Right. Okay.

But I will stock up on Kleenex.

What about you, Lynne? Like, how do you feel about using your identity as a job qualification, in a way?

I don't think I do. I don't think I do. Like the more I listened to Tim speak, the more I think that like we're perfect—Tim and I are a perfect team, we're like two sides of it. I don't think I use my identity as a commodity. I think I use my skills and my knowledge and hopefully my reputation as the commodity. It's like I come in as what I can bring you how I can make your research better. Because I think that differences in opinions and how people look at things, I think the most important thing, in the whole research slash peer research process, is the actual data—is the research. I think that we bring data to the researchers, that helps create evidence-based research that incites change. And I think that is the most important part of what we do, the most important part of our role. I think that secondary to that is the relationships we build and the empowerment, hopefully, that we bring to our communities, and to the individuals in it. But I think that the number one part of our job is to help create research that incites change.

You want to respond to that, Tim?

Yeah, I feel a little conflicted, Lynne, you mentioned, you know, the job becoming more professional, and I cannot separate my identity from my peerness and from being a peer researcher. And I've been invited, as my one current study is sort of slowing down, I've been invited to another study, which is on the Downtown Eastside of Vancouver. And I had to sort of re-identify what my peer connection is to this community, because it's not HIV-focused. I have had to sort of evaluate myself, like how am I a peer to this community? Because yes, they are wanting data. Yes, they're wanting me to use my skills as a, you know, an interviewer and all these things. But I had to go through a process, can I do this, because this is not the community 100% that I identify with. And that's my identity. So that's where identity I think is really a strong part of the reason I'm doing the work. I am doing this next work, because I have had many challenges in my life. So I do think that that is where I'm connecting to the people in this next study.

Right.

I think there comes the question about the term peer, and whether or not the term peer should be used. It's like, I don't think that we necessarily have to be, quote, unquote, peers, to be able to do our jobs as well. I think that there's no question that you could go into a community that you don't identify with as strongly and have excellent results because of your skills and because of your professionalism and, and because of everything that you've learned in the time that you've been doing this job. I've no doubt at all. And I think there, using the term peer, almost becomes a drawback because it's like, if you're not part of this community, then you can't identify as a peer and be a peer researcher.

I think this is why I—the idea in the back of my head about a peer alliance, where community organizations, AIDS-based organizations could make aware of an alliance of peers being involved in volunteering and research, and other roles would create a pool of people. I always find that when a new study comes up is like, Do you know anybody who would be—who might be interested in or has some skills are doing this? This should be already set up, I think it's upon us to sort of develop something so that we can have like a LinkedIn for peer researchers that we can share ideas, we can grow, we can learn from each other, you know, what is this person doing? What is that person doing? But also, you know, given the current state where people can be working remotely, we can involve people in peer researchers from all over. You don't have to be local.

I want to go back to the economics really, of working as a peer researcher, I want to play you this clip from Michael, and have you reflect on what he says.

Hi, my name is Michael. I'm a peer researcher for the Ontario HIV Stigma Index. I've been in this role for just over three years. I became interested in becoming a PRA for a few reasons. One of them was I want to reconnect with my community, and to see if there are people out there feeling the same way I was. Which kind of brings me to the second reason I wanted to become a PRA: I wanted to learn more about my own stigma, and how I could become a stronger, more confident person so I can manage the stigma that I felt, and to hopefully help someone else with their own HIV stigma. I would love to continue on with this role. I guess the only thing that I would say that I would love to see change is more of like a full-time position, so I can become more fully immersed into the role and hopefully cause some solutions and provide some real change.

So listening to Michael talk about his employment status, I wonder, Lynne, are you considered a contract worker? What's your what's your employment position?

I think I'm contract worker.

Contract worker.

An episodic contract worker, yeah.

Okay, what about you, Tim?

I am. I just signed another full year contract.

So you're contract. So I mean, what's your ideal? I mean, PRAwork can be piecemeal, right? And many people have other jobs or rely on government supports to create a livable income, and there's like feast and famine for you know, getting your income. So I wonder how do you manage that? How do you, how do you create a livable income for yourself?

Great, great, great difficulty. Great difficulty. I have to say. I get ODSP, so anything extra...

What's ODSP?

Oh, sorry, Ontario Disability Support Program. So anything extra I earn has to be reported to them. They take their chunk off, if I earn too much one month, I risk being cut off. If I don't turn anything, the next month, I risk being cut off because why did I not work this mont if I work last month? Then it's like, it's it is insane. It is crazy. And I think kind of one of the things that I appreciate the most and, and respect the most about seeing a group of PRAs together is how they kind of work with each other and give each other advice. And how to navigate ODSP and earning income is something that we talk about all the time. Like how to work that out, how to work out your taxes, because we're contract workers, we're not self-employed, but where is this money coming from? And I have to say, it isn't an easy thing. It's like I have times when I have lots of money and life is lovely, and I have times where like, you know, there's there's not a lot and it's difficult. Because you get used to having the extra money that you have in the month when you're working.

Right. Yeah, that's tough. Tim, what are your thoughts on that?

Yeah, I mean, it's been an evolution. I'm here in BC and I feel like I'm very lucky currently. Before, just as Lynne, if there was months where I reported too much income, they would penalize me. But that has changed and the amount of monthly income that I'm allowed to make overtop of my disability has gone up. And when it is measured, when I do my income tax, it's measured over a period of a year, it's no longer, you know, if I make $500 more a month, or $300 less a month, the next month, it doesn't matter. This again, sort of speaks to why I would love to be talking to peers all across Canada, because I mean, now I'm learning what's going on with Ontario and I see how how different and maybe challenging that is. I think there needs to be a little bit more fight. And, you know, a creation of a bit of a standardization, hopefully, so that we can have more equality across, across the board, you know? But the fact that I have a contract is great. What Michael mentioned was that he wants to stay connected to working with stigma and relating to people, just like me, although I've built up skills and my, the organization I work for finds me valuable and they offered me another contract, my next job may not be specifically as using my identity, or my peerness. So that part is a compromise for me, as well, because I mean, I would love to be working solely in a community that I'm really involved and connected with. But right now, they're saying, Well, I think we'll put you over here until maybe this study happens. So they're, they're very good at working for me, but, you know, I feel like we need to build this up so that there is more work available for peers in our communities, you know, across the board.

For sure. You know, I wonder if peer researcher work in general could be sustained in Canada, if it was not for the government disability support programs? I mean, can you afford to do this work without government supports, Lynne?

No, no, because I have, I have long periods where I am employed. But I also have long periods where I'm still maybe under contract, but I'm not earning money at the time. And so I would have to have like another job.

Right. What about you, Tim?

I have all levels of stress right now hearing us talking about this, because I've been on disability for many years., and the transition or the feeling of transition to where I am now to, you know, going off this sort of place where I feel I'm supported by the province, I'm able to do part time work. What would the new place of being—working full time and maybe uncertainty of employment, be like in terms of stress and my health? You know, my main job right now as a person living with HIV is to take care of myself and live healthy, so I'm not a burden to the healthcare system. And that's how I see it. That's number one. You know, if I'm scheduling my hours, I make sure I'm going to the gym first and then going to my job. So I mean, it's—I have to have that sort of live-work balance. It's, it's complicated.

Yeah, for sure. I mean, it took me a long time, I was on government support for a long time. And I had a job, but it was really emotionally challenging to, to feel safe to come off of government support, because without it, it's a challenge.

It's, it's so funny that you guys are saying that because it's like, I identify, Tim, with that, like, clutching feeling at your chesyt if you think about, like, not being able to have the dependability of of government assistance. It's like, jobs that I've looked for, looked at recently, it's like, I don't even consider full-time. Because the thought of going off disability, just petrifies me. It's like, oh, my God, what if something happens? What if I get sick? What if I can't go back on? What if I can't get my meds? What if like, and it's this big whirl of like, Oh my god, like, I can't, I can't do that.

Yes, and, and and to add to Lynne's point, you know, my years of experience of living with HIV and addiction are my qualifications for a job that is, you know, paying okay. Like, if I were to go off of disability, I would need to find that work. And I don't know if that work is reliable. I don't have a lot of transferable skills, because of my situation, how my life has unfolded. I could probably work two full-time, part-time jobs to find some place to, you know, be off of disability, but I don't know what my health would be like at that point.

Right. Let's talk about, you know, those transferable skills. So as a peer researcher, are you learning—I mean, okay, is there a career? Do you consider peer research a career or job? Let's start there.

I consider a vocation. I consider it a passion and I feel it is, I don't know if I would put the word career on it. It is, it is who I am and it is how I am, you know, able to give back and also make money at the same time.

Right. What about you, Lynne? Do you think it's a career or just a job for you?

No, it's a career for me. It's a, this is what I'd like to do for the rest of my life. I'd like to do it in different ways. It's like, I always tell James, I'm coming for your job. I want your job.

Right.

But that is kind of my dream. I would love to be a project coordinator. I love working with PRAs and the whole training aspect and the support of PRAs. And I'm very passionate about, again, the quality of the data and what research data does. It's like, I could definitely do this for the rest of my life.

And do you think that you, like where do you, where does that break have to come from? Is it something that you're doing or not doing? Or is it something the research team or the organizations need to do? Why is that not happened yet?

I struggle with how to say this like in in a good way, because I don't think that there's fault anywhere. I think that it's part of the process that we're going through that we're learning from. We've been given this title of research assistant or research associate, that has an equal position outside of the HIV movement—in research everywhere. There are research assistants, what research assistants do in academic research, or or outside the HIV world, is not the same as what we do in our world. So our skills aren't as transferable as—because if we go in and say, I'm a research assistant, I think the expectation is that we have A, B, C, and D, which isn't necessarily what we have. So I find that people who are looking for research assistants, whether or not it's a peer researcher, or not a peer researcher, they're just looking for skills that we don't have. And the skills that we have, there's no credentials for, there's no diploma that says, I can do this, or I can do that, or there's no recognition of our skills to be able to take outside the HIV world. And I think that might come. I think that is part of the process, but the fact that we're using a term that's used in other ways outside, I think. creates a barrier. Because they say, Well, wait a minute, you're not a peer researcher, or you're not a research assistant, or you can't do that, so...yeah.

Well, maybe this, you know, maybe this comes through in association or like the, you know, right Tim?

Exactly.

And here is how my mind works. I'm a Libra. Not that I believe in all this stuff, or whatever, but I'm very, like, seeing both sides of it—of the situation. And people who are research assistants in academic research, have a degree, they go to school, they have like university degrees, okay. They're like the people that we work in, in Ontario who are data analysts. It's like, you know, the ones that we have the privilege of working with in Ontario, through Sean Rourke, are working on their PhDs. And then along comes us and says, Well, our lived experience is equal to your PhD. And there's that balance of whether or not it actually is or not.

So you're finding a disconnect there.

There's definitely a disconnect. And I don't know how, I don't know how to like work my brain around it.

Because CBR, I mean, we look at you know, lived experiences expertise, as it is. It's about where you funnel that or, or what we can, what can we do with that expertise?

And I think that it is part of an expertise. I think it's part of a skill set. But there has to be more to it kind of than that.

What do you think about this, Tim?

Well, you asked earlier if being a PRA is a career or a job, I think that a research assistant is a job. I think that a peer research assistant, for me, is more of a career because I'm a specialist. I am bringing this. A research assistant is not bringing that. I am gaining some of those skills as a research assistant, and if I wanted to become a research assistant and do that full-time, I imagine I could pursue you know, education and get all your accreditation to do that, to do to become a research assistant, but it's not—that's not why I'm here and that's not...I spent all my years—I spent like 30 years becoming a peer, so I think I've done my education. So I want to stick where I'm at.

Got it. So okay, from your point of view then, and I'll ask you this, Tim, first, is the PRA model as it exists working?

I think it's beginning to work. I really do. I feel like where I am at here in my position out here in BC, I am probably example of a gold standard of what it is to be a PRA, but I know that that doesn't exist equally across the board in Canada. I think that there is a struggle to bring more awareness, to bring more people get them involved to, to demonstrate what our skills are across all parts of community-based research, so that our position is more solid. I think we need to be solidly part of things, we don't have to be just sort of like, you know, part of a, you know, a research grant application, as a token. I think we need to be really invested in—an invested part of community-based research. And we need to be connected with each other. And we need to have some standardization. So I don't think we're there quite yet. But I think we're at the beginning.

Okay. So Lynne, from your point of view, do you think the PRA model is, as it exists right now, is working?

I agree with Tim. I think it's beginning to. I think that in some provinces it works better than others. PRAs in their roles are becoming more recognized. Yeah, I think, I think it's beginning to. I think ideally, what would happen is that—I really agree with Tim, like on what he said about, about all of it, but about the thing about not putting us on grant applications as tokens. I think that PRAs should—almost like a partnership—a PRA should be attached to a, to a primary investigator. And from the very beginning, it's almost like a mentorship program, it's like so that the PRA goes through the entire process, from the beginning to the end, with the primary investigato. Just as a learning tool, but also, I think primary investigators or investigators have a responsibility to the community—to empower the community. And they, their role in empowering the community is to support PRAs.

Okay, thanks. So I have one more question for you guys. So what, Tim, what have you learned about yourself doing this work?

Oh, I think I've learned that I am stronger than I ever thought I would be. I am more—I'm prouder of myself. Because for years, I undervalued myself, and dealt with a lot of stigma and shame. And I feel like I can hold my head up, I feel like I am part of creating, you know, improvements in my community. And I feel valued, I feel valuable. So this has been a big transition of my life. And I couldn't be more grateful that I've had the opportunity to be around that. And I wish that this was more widely available to people to attain this type of work and see their value.

Thanks. Same question to you, Lynne. What have you learned about yourself doing this work?

I've learned that I've had, I have a lot more in common with the world than I thought that I did. It's like that we're all more the same than we are different. And looking back, I can see that I started doing this with a lot of judgments and a lot of stereotypes and a lot of biases that have been broken down simply by getting to know people. And it's like, my life, my life is different and I am different, and everything has changed because of the people I've met and because of being given the opportunity. And I know that that that may sound cliche to people when I say that, but it it truly, truly—this job is transformational. It's like, it changed how I looked at the world, it changed how I looked at people, it changed how I looked at myself—how I judged myself. Like, I almost found my focus because I love research. I love what it can do. I love the potential of it. I love the data. I love how it can empower community. I love how it can empower the people in the community. I love the potential of research. And I'm just grateful to have been given the opportunity to know that about myself, because I never would have known that without this.

Well, thank you. Thank you both. Now I have five rapid fire questions that we always close off pozcast with, and I will start with you, Tim. And it's just you know, just this or that questions, right? We'll start—the first one has to do with the Olympics because the Olympics are on. So, gymnastics or track and field?

Gymnastics.

Truth or Dare?

Dare.

Intelligent or funny?

Both. Can you tell a good intelligent joke?

Passenger or driver?

Driver.

Rich or successful?

Successful.

Alright, now Lynne, same questions to you. Gymnastics or track and field?

Track and field. This will show you how Tim and I like are two halves. So I'm track and field.

You're track and field, okay. Truth or dare?

Truth.

Intelligence or funny?

Intelligence.

Passenger or driver?

Passenger.

Rich or successful?

Rich, baby. I want to be rich.

You are my other half.

I don't care about successful, I just want the cash.

Well, thank you both so much. It's been an absolute pleasure. Appreciate it.

Thank you, James. And thanks, Lynne, it was great chatting with you.

Oh, it was so great talking to you both. You both are amazing.

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 pozcasts4u@gmail.com. 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 Effect 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.