S2E10 Peer Reachers: Let's get real (Part 2)_09-30-2021

7:15PM Sep 24, 2021

Speakers:

James Watson

Lori Chambers

Zack Marshall

Valerie Nicholson

Deborah Norris

Keywords:

people

research

community

zack

lori

researcher

peer

tensions

knowledge

project

model

role

valerie

thinking

engaged

questions

hiv

hire

person

peers

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.

Oh my gosh, humility. Definitely humility. I think that's probably the number one thing and just to look at our assumptions, especially when we think we're doing the quote unquote "good job."

Today on pozcast is part two of a series exploring the role of Peer Research Associates, or PRAs, as are commonly referred to. If you haven't had the chance to listen to part one, I highly recommend a listen. I had a great conversation with two highly respected peer researchers, Tim and Lynne. It's a good one. In my ongoing journey to get input on peer research, from a variety of points of view, I reached out to two people whose work and way of working, I really admire. They have an intimate knowledge of working with peer researchers and care deeply about the people they employ, and the employment experiences they have. Lori Chambers and Zack Marshall are both accomplished social workers, social justice advocates, and community-engaged researchers. Welcome to pozcast, both of you.

Thank you, James.

Thanks, James. So happy to be here.

So I'm thrilled to have you here. Let's just dive right in. So in my conversation with Tim and Lynne, two very well respected peer researchers, I opened with a question around motivation, like why do they do the work that they do? So I want to put that same sort of question out to both of you, Lori, what draws you to the community-engaged research work that you do?

I got into this work almost by accident. I got into this work as a volunteer at an AIDS service organization, and the executive director at the time, Ruthann Tucker, invited me to be part of a project, which was actually the precursor of Positive Spaces, Healthy Places. And she introduced me to a way of doing research that was so—it was very much grounded in community wisdom, and that's the way she phrased it. And that the work that we do, and that's probably why I also went to social work, the work that we do as social workers should be grounded in community wisdom, there's a history of it not be. But so I approach research, like I approached social work, as a form of community practice, and more so it's a form of working my way out of the business, which I've always pursued with both social work and community-based research.

What do you mean, by working your way out of the business?

Well, I kind of think about some of the conversations I've been having. And to me, community-based research is shifting from being, you know, an academic who maybe leads or co leads research to be more of an advisory role, or a role where you work—not even in tandem, you work to elevate the wisdom of the people who you work with. So ideally, I would hope that I moved back, meaning, you know, I support other people in doing the community-based work that they want to do, and they asked me questions and advice as need be. But it's not about me, you know, the getting papers done or whatever it's about we, which is the community—people I work with, the organizations I work with, and the facilitating of that process.

Right, and Zack, so what draws you to the community-engaged research work that you do?

Well, I tried to go back because I sort of thought you might ask us something like this. I tried to go back and try to figure out when did this start? Kind of like Lori, my first response is I don't really—I guess I would say, I don't know how to do it differently. But that's not exactly true. I've been taught many ways of doing research, I would say, partly not interested in doing it differently. But I also don't feel I feel like I'm refusing now to do research differently. I only want to do research that is in solidarity and in partnership with communities. And often that's communities that I'm a part of one way or another. And even around HIV, I was trying to think like, when did I start getting involved in community-based HIV research? And it's a little bit hard to disentangle because so much of our early work it was, I didn't even call it peers—it was all like by and for the community. So it's hard then to disentangle research from that. But it's just I feel it's so much a part of our roots, even when I first started getting involved in the early 90s.

Right. Do you think like the work you're doing now, or the work that you do with people living with HIV, do you think you're making a difference? Lori?

Oh, that's an interesting question. Yes, in some ways, and no, in others. Where I say yes, is I've noticed, the projects that I'm on, are not necessarily academic ones. They are projects where communities leading, they asked me to advise in some way, and how I participate is often varied. But it's not expecting me necessarily to be the leader, even though I do do projects where I might be in collaboration and leadership. So yes, in that way, no in others, because what I'm noticing is, people feel this need—I am noticing this academicization of community-based research work, and it's partly our fault. I noticed a lot of people feeling this need to get a degree. And I ask them why they go, because I'm often silenced or not listened to, until I get, you know, a Master's or PhD. And then they say, Look at you, Lori, you did it. Like, oh, but at the same time, I totally see this credentialzation happening for good. I think more people that, you know, more community members should go to school if they want to go to school, but also the challenge. What about people who cannot? Should not or do not want to? Will this shut them out of doing community-based research in ways in which they can also be leaders in it?

Oh, that's interesting. What do you think about the credentialization in community-based research, Zack?

I think there's so many differences depending on sector. So I was thinking about, like research in partnership with people who use drugs, I feel like the experience—the lived experience—is the most important piece. But there's been such strong advocacy, similar to GIPA/MIPA around ensuring that people with lived experience are at the center. And in in leadership roles, I feel like there's a high degree of sort of a demand for accountability around that. So I know there, there are definitely also movements around certificate programs even say, so even if someone isn't necessarily deciding to go to university or college, there are definitely certificate programs also around peer support. So yeah, I guess like I struggle with it a little bit, kind of what you're saying as well, Lori, I do struggle with this a little bit, because what are we saying that, oh, there there needs to be this group of people who don't have, you know what I mean, this university education that are, "peers," it gets into the whole thing about what is a peer. And I know we've also heard from people with lived experience, including people living with HIV, who find that as they get more and more experience, they may be moving further away from their original circumstances and also from the concept of the who researchers are trying to reach. So it can be distancing. I think, sometimes the whole professionalization or increased training or just increased experience period, can be distancing.

Right. Well talk to me a bit about your perspectives on the peer researcher role itself, like what is their main function? And what is the what is the value that they add to the project? Lori?

It's an interesting question because yeah, it goes back to what Zack says, what is a peer? Increasingly, the work that I am doing is work with, for and by people who identify as ACB living with or impacted by HIV. And as such, in some senses, I am a peer and in other senses, I am not. As a person who identifies as Black or of African descent, and also a person though who also identifies as HIV negative. However, what I sense peer is, what peer researcher is, is a person who has multiple ways of knowing, one of which is experiential or work-oriented. And that experiential knowledge is something that cannot be read in a book, or it cannot be obtained in a way that academic knowledge can be. But I also see peer research a way of be with research. And what I mean by that is you're engaging in research that has a tangible impact on the communities in which you identify with. And that's where this notion of peer shifts for me, because a lot of projects that I do impact Black communities, both living with and impacted are racialized women. So I'm really mindful that that lens of peer sometimes shapes the projects that I choose the methods that I use, and even the people I work with. So I feel I know that's a circular answer, you know, me, I talk in circles. I think it's a circular answer and saying, it's really dependent on context and how you define experiencial knowledge.

Okay, so what is the value that peer researchers add to a project, then?

I think both the exponential insights and the passion to apply those the learning from research with and for their communities. And also to to a representative aspect, where people feel that they can look at research and say, Hey, this is research done by people who, not only have lived experience, but who want to give back the wisdom back to my community. I think that's really important for people to be able to see that the members of the team are representative of the communities with which the research is intended.

Right? Would you agree with that, Zack?

I think, for me, in a way, it depends on the project. So let's just say there's a community that's worked together for a long time, and they've identified Oh, we want to do some research about blank, we'll just see, we've been talking about food security, right? Food security. And so then that group, like, even if a geographically specific group, or experiential specific group would maybe partner with the researcher, so in that case, it's almost like what does the researcher bring, this university researcher or this academic researcher bring, as opposed to what does the peer bring? I mean, to me the quote unquote, peer, and I say that because I know a lot of people do not like the word peer at all. And we've been trying to instead use words like community researcher, community scholar, but in any case, I don't want to digress too far into that, but it's also hard to keep saying peer, when I've heard so many times that people don't like it, you know. So in the context of a project where you have community members who are—or a community that is partnering with the researcher, it's more about what do you want that academic researcher to bring? And even individual peers, I think might bring specific skill sets, you know, what I mean, might say, Oh, I want to do this, or I want to get involved in data collection, data analysis, all the different types of roles in envisioning the project, designing the data collection tools, there's so many pieces, but to me, it's more about the accountability, and the continuous sort of checkpoints that you can have where you can go back and say, Okay, so we did this. We talked about doing this. Now we did this part of it. And what should we do now? Like, it's more of a partnership. It's not just like, Oh, we hired these community members, and they have a job. You know what I mean? It's not that, in my mind anyway.

Right? Fair enough. So, before you begin a project with peer researchers, like what are some of the key elements you need to consider? How about you, Lori?

I was hoping you'd ask Zack first because I struggled with that, then maybe Zack can answer it better, is it assumes that it's a job, or it's a kind of, you know, here are the qualifications that you need to check box you need to be a good peer researcher. But I usually don't approach it that way. It's basically there'll be a group of us having this conversation. Or having this, we're talking about this idea. And we're thinking, Oh, we should do that as a research project. Now, one of those persons could be living with HIV. Another those persons could be identify as, as a racialized woman, or another community impacted by HIV. And another one of those people could be an academic, and sometimes it's not easy to separate them. Sometimes the academic is also a person living with HIV, sometimes the racialized person is the academic so and so forth. So it's not this checkbox thing, it's we all are having this conversation, having this intellectual puzzle, as I sometimes say that we all share, and we kind of want to untrouble it. So we work together collaboratively. I haven't approached that research in that way since I've left OHTN, because...

The OHTN?

Oh, sorry, the Ontario HIV Treatment Network. When I was in a role where I was an employee, yes, I approached it that way when I was an employee of a community-based organization, but since then it's more of this collaboration amongst people who have a shared, a common vision of how to gather and share knowledge. And our identities are part of that troubling and desire to see, to gather and share knowledge.

So are there then constraints, I mean, you're constrained by an organization or university, let's say, over how you work?

Those constraints happen when we institutionalize research. So for instance, we might be having this conversation Oh, yeah, we should do your research study. Oh, then the academic says Oh, well, we have to write a paper because I'm on the tenure track, and I need those papers written. And then the person who works in community organization Oh, well, I need to make sure that it fits within my job criteria, so that I can work. So you know, or we do it after work if I'm not being part of that, which is additional job for me—multiple hats, as it will. And then the person with lived experience, and this can all be shared to say, Well, you know what, I want to make sure that the GIPA/MEPA practices are installed. Yes, thanks for having this conversation, but we have to ensure this goes back to the community. And then we notice the tensions. Where, well, does you publishing this paper a bit GIPA/MEPA, does the community organization mind if the academic organization holds the funds? So what happens is, once those nice, great conversations with generative conversations happen, and you know, we put the—we have to actually do the research, once the institutionalization aspect happens, or the requirements that need to be fulfilled for this to be an academic research project or a community organization led project, that's where the tensions lie.

Right. So Zack, for you, I mean, is that a reality? I mean, you're based in a university, is that a reality for you that some of these constraints come into play when producing your research?

They definitely do around hiring. Sometimes, for example, I'm in a situation where recently, they changed the guidelines of who counts as a research assistant at my university, and so the only people that can be hired currently, as research assistants are full time students, I think it is. Either it and sometimes it's Masters or PhD students, specifically. So then we have some funding, and within our funding call, like within our proposal, we are hiring community members and peers, specifically. And now peers could be people who are grad students, but we want to have more room, we want to be able to be more inclusive. I've had to go back now a couple of times to HR to ask what we can do about this. But this, I think, from institutional perspective was seemed like a quote unquote, easy decision, and was meant to encourage faculty members to hire students from, specifically from my institution, right? And so it's just it's led to a lot of questions that I've had to go back a few times, I've had to go talk to other faculty that do community-based research to ask them, How are they handling this? And it wasn't really publicly announced, either. So I just sort of found out by happenstance, when I went to say, I want to post this job, and I want it to be a community member that's hired not a student. Definitely there are constraints. And then this requires us to be creative. I know sometimes people will be able to, you know, work with the community based-organization and close some of the funds there, so we can pay community members through community-based organizations. So sometimes we do we have to be creative or is it then someone is getting an honouraria instead of being an employee, but then what are the ramifications of that and that comes around to some my own deep, deep interest in the labour practices that we have in the field of community-based research. And and some of those things, we maybe were thinking, Oh, well the good thing is the person will still get the money, you know what I mean? Because but they'll get it in the form of a stipend or honourarium, but that's not the same thing, right? As being an employee and, and the potential benefits that come with that there's, there's a lot to sort of sort through there.

And we're gonna get into that, sorry, go ahead, Lori.

I was just gonna add to Zack's point, because the flip side of that is the multiple hats tension, where you have people who are employed in a service or community health organization, who want to engage in research, and they have a salary. So that facilitates that one end of the challenge of the precarious labour of peer work. But the challenge of that is they have multiple hats. I remember one time I'm on a project, and everybody wanted to participate, but they're going, Lori, I'm on so many projects, I'm tired. And I said, Okay, how can I make this easier for you? So we did CABs [Community Advisory Board] less often, but then it made me feel that people are not as engaged in the project. So it's, it's less participatory in some sense, but we had to do so for their own labour—to make sure that they didn't feel overwhelmed by their participation. But at the same time, it could be argued that it has less community engagement because of that. So there's also the tension of overworking people who want to participate in projects, particularly if they're part of a community that is underrepresented in research.

Right, right. So what's the one piece of advice you'd give to a new researcher, who is looking to work with peer researchers, Zack?

Get good advice. Talk to people in advance, you know, as you're planning, especially if you're applying for funding, before you submit your budget, because you really need a budget that's going to have enough room to really engage with community members. So not just like, blank dollars per hour for say a peer researcher, but you need, like Lori was just talking about, you need a community advisory board, then you need stipends for people, then you need food, you need money for a condensed training period of time to really help people, whether it's about training, or people are already experienced, it might be more about team building, if you get the funding, then you need the time to work on data collection tools. So you need to really build in the funds if you're working with Indigenous communities, you may need funds for knowledge keepers or to work withIndigenous Elders from specific communities. So there's a lot there that needs to be thought about in terms of space, technology, and resources that needs to be in the budget. Because otherwise, if you apply and you've just got seven hours a week for a peer researcher, you know, for six months, like from my perspective, this is not going to do it. So I think talking with other people who've done it before makes such a difference. Because you could say Oh, would you mind sharing your budget? Or can you tell me how you went about developing your budget? And and talk to obviously, like peers themselves, do some really good consultation before you jump into it.

Right. I've been thinking like how, like, how do you learn as a student? Like, how do you learning about eer research? Is that something that you just have to dive in and do and poke around? Or is it something that they teach?

I think, I know there's some really good people who are engaging students, in social work anyway, who are engaging students at early stages. For instance, when I was a Masters student, David Brennan engaged me on his project in terms of recruiting during Pride. And one of the reasons he did so is he felt that my experience and expertise would help but also I learned how to recruit in a particular way for a survey, which I never knew before. So it's a little bit of a mix of the student gaining some skills in terms of, you know, some social work schools, I've taught it, I've taught CPR, but CBR is very much you got to get into it. You've got to learn through doing the work in and also making mistakes. I've made mistakes where I've been, you know, years later people say, you know, that research project you were on when you were at BSW, Lori, where's the paper? Or where's the community report? I'm like uhhh...So I think that it's really important for students to get some, you know, learning. It could be a course, it could be a workshop, but the real learning is the doing. And finding good mentor—I've been lucky in that. And I think students, if they really want to engage in this, find someone who really inspires you and learn from them. Often good community-based researchers are good mentors, because basically they want to share knowledge and share what they do, and ensure that community-based research is sustained.

Okay, so, Zack, what have you learned about yourself working with peer researchers?

Oh, my gosh, humility. Definitely humility. Yeah, I think that's probably the number one thing, and just to look at our assumptions, especially when we think we're doing a quote, unquote, good job. Because I so remember the time when I was so happy that we were able to hire someone full-time for a research coordinator position, and I found out later that the person still didn't have health benefits, and had lost access to their prescriptions being covered from before. And so then they're paying a huge amount for their prescriptions. You know, they didn't tell us and I didn't know. And so it's just this went on for quite some time until I overheard something in a conversation, I was sort of like, What do you mean, like you're having to pay $400 a month for prescriptions? You know, so I thought, Oh, my gosh, here, oh, good for you, Zack, you know, like, here, you thought like, congratulations, you thought you're doing this great thing, and actually, it ended up being a burden for the person. And then so then, so then we had to do some additional advocacy. In that case, it was through a health institution, just to address this. You know what I mean, because you can just be too far removed, you know, I mean, from the person's experience, and they might not want to get into it with you, they might not want to tell you, and they have a right to—people have a right to privacy. But on the other hand, if you don't ask you won't know. So I think instead, we should start to have like, questions, you know, that we are having as part of like when we're hiring people, like what are the benefits, but what are potentially the costs of taking different approaches. And that's why I think the way we hire people, the way we engage with people, it needs to be flexible, and needs to best relate to their experience and what their goals are, you know what I mean? Because some people don't want full-time employment. They're looking for something different. And so I think we need to be able to have the mindset to be able to have these conversations, and to be very clear with people when we are asking them why we're asking them this. So you can never really get too comfortable with CBR.

Asking the same question, Lori. So what have you learned about yourself working with peer researchers?

Humility is a huge thing. And also, I guess the first thing that came to mind is, and I'll explain it checking, your privilege, I think as it came up in Zack's answer. And in mine, I remember the first, it was a housing study, people who experienced housing precarity, precariousness, and I'm assuming they're easy to reach. That was naive of me. And assuming that the person I talked to last week would have the same number, as they had before, no. And papers as another way, like where, you know, people might be really happy to be on a paper, but when they see all the affiliations that some people have, and then they have an affiliation as community member, that can also be one that demeans their role. And what I mean by that is it creates this hierarchy of knowledge that can be problematic in publications, but more so that they're seen as different. So sometimes I say, why can't we—none of us put our affiliation? Why can we just put our names, and then that causes tensions, as well. So I think it's really important to have those conversations out in the open before, and actually talk about you know, it when we're in, we're doing a research project that is affiliated with an academic setting, these are some of the tensions. CBR should not be doing harm, but it often can do harm if we don't think about its practices and the institutions that construct those practices.

So let's listen to what Deborah has to say here. I just want to get your take on a couple of the issues she raises.

Hi, my name is Deborah, and I'm here in Edmonton, Alberta. I've been a peer researcher for the Alberta Stigma Index for two years. I was diagnosed with HIV 30 years ago and have been a participant in many research projects over the years. I got involved in doing peer research because I believe really strongly, that the greater involvement and meaningful engagement of people living with HIV, particularly in research, is extremely important. So when I was given the opportunity to be involved with the stigma Index, I leapt at the chance. I'm hoping that over time, I'll be able to be more involved in the coordination of research, the analysis of the data, and disseminating research so that communities can act on the knowledge that has been gained. I feel strongly that it's important that research has an end goal of changing society, and improving the lives of people living with HIV. Thank you.

So Deborah mentions, well many things, but but her strong belief in the GIPA/MIPA principle drew her to the role that she's hoping to advance and do more. Right, that her role will grow. I mean, she's certainly not alone. I hear this all the time. We all do. So how could research teams better support this kind of engagement and growth? What do you think, Zack?

Well, I think the way I've seen it happen best I'd say is, as people are gaining experience, I think there needs to be a model, where, and this is echoed in harm reduction work, actually, where people can initially start, if they have no experience, you know, they can start with some elements of the work and then start to get more involved in and gain experience. I think community-based research is really an apprenticeship-type of model for everyone involved, whether it's community members or academics. And so this apprenticeship way then means that we're learning how to do it, but we're also learning from each other. That way, we also are learning to hold each other accountable. Because that's another piece of it. It's not just learning, say how to recruit people, or how to administer a survey, but it's also how to hold each other accountable and to be responsible together. So there's a number of skill sets. So I do see it as possible. And I've seen it happen that people can advance I think, for me, one of the constraints is actually the budgets. Every time we're doing this, we're going to provincial funders, you know, grant funding, federal funding, they're super competitive, they're all time-limited. So these are not permanent positions. And so it just, it definitely contributes to the precarity. But also instability of it. It's just it's so unexpected. We don't know ourselves whether or not we'll be able to get funding, and then how much we'll be able to pay someone and all of that. So that just makes it a little bit harder. It's more a function of where the money comes from to do this type of work.

I mean, it seems to me like you're talking about advancement in the role, right? I mean, there seems to be such a disconnect between the principle of GIPA/MIPA, like in theory, and its implementation. So I'm wondering if you could speak to that a little bit, Lori?

I agree. The whole point of GIPA/MEPA, is nothing for us, without us and including research. And you know, when you look at the foundations of it, it's in all aspects of the response, including all aspects of research, and it kind of resonated with how Deborah said she's doing one part, but she's not doing the part with analysis and dissemination. So I do agree with Zack that apprenticeship is really important. Where I think also we have to look at is the structures that we've created, or the structures in which—it's almost like the structure is here, and this structure is very neoliberal. Very unconstrained, and then we've dropped CBR into it. And so we don't have the funding, because the structure didn't anticipate that a person would want to do this full-time, at a sustainable wage, for years. And we have this constraint. So I think if we don't change the structure, if we don't change the structure of research, and of knowledge gathering, which CBR has been plugged into, I think we're always going to have these tensions. And also with models, I know that you guys at Positive Effect have looked at different dissemination models that ground the knowing practices from the community members, and I'm looking at that, too, like home knowledges. How can home knowledges from communities of African descent be integrated in knowledge gathering and sharing? Because once again, if we don't change the structures of research and how we conduct research, we need PhDs and certain ways, and I don't think that's right. I don't think that's right.

So is it time then, for a PRA co-op, union national association? Is it time—I mean, is the model broken? Is it time to rebuild? And I'll put that question to you, Zack.

Well, I'm definitely super excited in alternative labour practices, so called alternatives. So whether that's unions, clubs, social enterprises, ways for people who are working as peers, to be able to leverage their experience together in ways that would be less isolating, because we know it's very like each individual kind of like each one for themself. We've had a lot of feedback over the years from people saying that they feel isolated, or they feel that the players are not accountable, or they just, they heard about someone on their team got fired, and there's with no notice, you know, and they don't know why or they didn't agree, and it has had a huge impact on that person. So and we also have heard a lot about people feeling like the work they do is very emotionally engaging, but also taxing, and that there's not enough supports in place. We've had a lot of feedback about what's wrong with the current model, I definitely think that some collective responses would be great. And I don't think it necessarily has to be all peers, you know what I mean, all peers that start, say, a worker co-op, it could be done more as like a solidarity tool that is actually bringing together like minded-people. Because one of the things I've been hearing about co-ops is that they're actually really difficult to administer, and it takes a lot of energy in and of itself. No, I'm not saying that peers couldn't do that. I'm not saying that at all. But I'm just saying, what roles do people want to have? And how can we best like match those to what people are able to do so that we have some people that like to do things that like, write bylaws, and deal with payroll, and you know what I mean, deal with all of the government registration of a cooperative, which they're all provincial, there's all these legal aspects to it, blah, blah, blah. So let's make sure that the people that are doing that are the people that want to be doing that, and that people are taking on roles that hopefully they feel excited about. The other thing for me, though, is it still doesn't get around the problem of where do we get the money? You know, because part of me is like, Oh, can we just like go around the academic researchers and have a be community driven research period? But then I still have the question of Well, then, where does the money come from? Because a lot of the initiatives that go to community organizations, they don't want to fund research. So it's like, they want to know, maybe fund evaluation, which could be a form of research, but they don't want to fund research. And they're really adamant about that, right? At the municipal level, or you know, at the provincial level. So I totally heard what you were saying, Lori, I guess it's also saying, Okay, if we're going to do it that way, we probably also need to advocate about where the funding is going to come from.

Yeah, yeah, I think that's my biggest tension. I do agree that there's been a lot of great work in terms of addressing how GIPA/MIPA is not fully integrated and community-based research. And we've, we've seen a lot of people who've done great work, Adrian Gupta is one, Zack, you're another, Sarah Flicker, there's like a whole name of people that we could credit, but the biggest challenge is, Okay, we've identified it, how do we implement it? And Zack has pointed out the money aspect is a big thing. And also, too, which forms of skills are valued, still holds on to a traditional model. And when I say traditional, is the model of research that's academic-started, and then imposed upon communities, rather than the communities imposing their ways of knowing and their knowing practices. And if CBR's rooots need to be—we need to uplift the plant of CBR and put it in a different foundation.

When I was speaking to Tim and Lynne about this very topic, Tim spoke about wanting to connect with other peers across the country, as you were mentioning Zack, you know, via an association or union or something like that, and determining sort of a common dollar value for certain tasks that they do that kind of thing. But Lynne was more concerned it would take away, like professionalizing the role, would then take away from the peer relationships and would create a distance with community. You know, peers aren't aligned with one way of thinking or the other, either. I mean, it's complex, for sure.

But it's true. Well, for some people, a change would make them personally vulnerable, right? We're kind of talking about the difference between individual people circumstances and then kind of systems change. People that are where the current system might be working okay for them, they might say, you know, Let's not shake this up. It's it's going okay, like I'm doing okay with this. I've also heard at the event that you organized, James, with Francisco in Halifax, there I was, I was so fascinated by some of the responses. I mean, people were saying, well, also we're worried what if the academic researchers don't like this idea? What if they don't support it? What if they basically say, No, we're going to hire someone else, we're not going to go with unionized workers, we're going to go with other people that we can just hire independently, that's not going to be, you know, such a quote unquote, hassle, and that we won't have to pay people at these rates. So it became clear to me there that I was like, Oh, right, we also have to get buy-in. We have to have a consultation, just kind of cooperative process to even figure out how we're going to do this, and maybe get a few people that do hire a lot of peer researchers kind of like to get on board with it, because it will require sort of a certain amount of community, I don't want to say pressure, but more like expectations. An expectation that this is now how we do this. And this is sort of like, even if we were to say specifically within HIV CBR, that this is how we want to proceed from now going forward, you know, this is our sort of our best option.

When I heard you guys talking about this, one thing that I was grappling with is to commodification of that of certain skill sets...It kind of brings me back to how the consultancy model kind of started about with CBR, where certain people felt that the whole notion was broken and said, I'll be a consultant, you know, people want to use me, I'll be a consultant, you have to pay me these fees. And then certain people were super consultants, you know, they did quite well, and other people struggled, because some people were really good at commodifying their skills, and other people were challenged by it. And it still went back to what skills are valued in the current marketplace. And I use that language, I know it sounds crass, but that's what seems to could be happening. Granted a union and a union model, you hope to strive towards that, but try against that, but there's still this sense of commodification of skills. Which skills will have currency? Do we look at everybody's skills at the same? What happens if someone can't. you know, like, I know, some people who are really, really good at recruitment, ones that they always get hired. Do we—you know, there's all these different...

It's also the commodification of identity, right?

Yes. Oh, my God, yes. And that also worries me, too, in the sense that, so people will have to, you know, be an influencer in a sense. And to be an influencer, you have to position yourself in a certain way to be hired. And what are the tensions of that for a person who does not want to position themselves in that way? Do they jeopardize their, you know, their their ability to work in this new field?

Lori, can I ask you a question? James, am I asking too many questions?

No, no.

I want a Zack question.

Well, I was just curious, because I was thinking right now, at least if it's jobs, all the jobs have a certain amount of specific roles, right? I guess I was thinking that if, if people were working within a co-operative model, then that group basically then contracts with the researchers are at the universities, right? And then they could have like, multiple contracts. And so then people could use their current skill sets, but also hopefully have opportunities to build if they want to. But does it seem, I mean, maybe you're totally right. Maybe it's, maybe it is the consultancy model, is there a better way? I'm like, Oh, my God is that—I would love, I would love to know like, because we're still thinking about this so much right? We're trying to figure it out.

And remember, I'm also thinking about, when I'm mentioning the model might have challenges, I'm thinking about it as a person of African descent, who's worked with Indigenous researchers, as well. And we all also think the model is problematic, because it's a Western approach to collaborative work that hasn't always worked for us. And then there's a risk of tokenization and I have already seen this happening, where certain people's identities are hot commodities in this particular marketplace, and they will get the work in particular ways. I don't mean to be crass, but there's always a challenge when doing a model where it's commodification of people's skills. I do think there's promise in the model, Zack, and I don't want to discount it at all, but I think you'll—one thing we'll really have to think about is, what happens if people have different skills? Is it a skills building exercise where anybody who wants to recruit can recruit, rather than the person who's best at recruiting does the recruitment? Do you get what I mean? Or people who have specialized skills, they teach it to others, but that if that specialized skill is a home knowledge or a local knowledge or Indigenous knowledge, how do we deal with that? Because that's where tokenism happens. What about Idigenous Knowers? How will that model recognize that they can't commodify their knowledge in the same way? They can't. It's community knowledge, it's grounded in their home ways of knowing—there's a tension in that.

Thank you very much, Lori.

No problem. And I think it's an off-pozcast conversation.

Sorry, I'm completely distracted. I was listening and I forgot I was hosting a show.

Yeah, it's an interesting debate.

It sure is. I mean, there's lots there. That's another show. Okay, so let's change gears a second here. So let's hear from Valerie, speaking of Indigenous people, who speaks about why she became a peer researcher and her goal to bring research home.

Hello, my name is Valerie, and I'm living in what you call Vancouver, but is actually the unceded ancestral traditional territories of the Coast Salish people. And I honour the Musqueam (xʷməθkʷəy̓əm), the Tsleil-Waututh (səl̓ilw̓ətaʔɬ) and the Squamish (Sḵwx̱wú7mesh Úxwumixw). I have been doing peer research work since about 2011, and the reason that I got into peer research work was because the research that was being done here was not respectful. It was not taking into account the feelings of us taking this research questions. And a lot of the words they used were very stigmatizing or degrading, or it was like they didn't care. And we never saw them again after we did the research. I was asked to be involved in a research study and I saw that the questions were quite disrespectful. So I worked with them and said, I cannot take this to my community. I still live there. So I would change the words from drug user, or how often do you abuse drugs, these are just really not nice words to be sharing or talking about one another. And then as I stayed in with research and working on other projects and helping to design them, I noticed that the research that I had been a participant in, I never saw those results, they never came back to community, they were always just driving in, getting whatever they needed and never coming back. So one of my true goals is wanting to bring research home. Bring it back to community. My future in peer research....well, currently, I am a principal investigator, I have developed my own survey questions, working with true allies, getting funding, but I'm indigenizing my research, going back to my roots, going back to walking on the land with the land. And really honouring the teachings that were here before any of us were, weaving that into the western research ways, but doing it in an Indigenous way. And I see this really starting to evolve, and we're changing our language, and it's a journey that I think is so needed. I can remember that as a peer, we weren't allowed or we weren't invited maybe is a better word, to CAHR conferences, it was only for the scientists, the researchers. And as we started getting our foot in the door, I would stand up and say, Why are you saying mother to job transmission? Why are you blaming the mother? You don't say to me, you know, man to woman transmission, why are we putting these labels on it?

Let's chat first about bringing research results back to the community. I mean, seems like a no brainer to me, but this lack of dissemination, well, it seems to happen all the time. But I don't think it's on purpose. I mean, I think researcher priorities shift and move, and life gets in the way. Lori, can you talk to—talk to that about why it's important to bring data back to the community and why it doesn't happen?

Yeah, I'll do both. It's about can accountability and trust, what Zack has mentioned. I see research as a form of appropriation, and what I mean appropriating knowledge. You ask people questions in order to glean a certain insight that you don't have, and you do so in a way to ideally, to benefit them, so not giving back—is it's not reciprocated. You're basically stealing knowledge and not giving it back in a tangible way, whether it's, you do an academic paper, and you don't present your findings to community, you do analysis, and you don't member check it or ask community members what their thoughts are on it, or what I see often happens, well intentioned researchers, whether in universities, community-based organizations, will do this research with thinking of being within a limited timeframe. And then they realize it takes longer to do CBR. They have a three year grant, they have to do some publications, and they also have to be accountable to their own job. So they don't build in this giving back in a really meaningful way. And so what happens is they're more concerned with doing those papers in the summertime, because that's what a lot of us are doing right now, so before September comes, we have to start teaching and like oh my god, how are we gonna have time? And they're not thinking, Oh wait, I have to present this work to community to see if, what Val says, “deficit ideologies,” is the language that I am using problematic, in terms of how I analyze findings? Is the ways in which I see the world through the lens of somebody else really problematic? Am I you know, imposing my privilege viewpoint on the knowledge? How to disseminate? A lot of people don't read community reports, are we going to do it through a conversation, or we're going to do it through a 10 minute presentation with PowerPoint slides? So a lot of the tension is not mobilizing and translating knowledge gathered in a way that's meaningful and fruitful to community, and has that aim towards benefit. I work in federal service, too, I'm right now taking leave, one thing we also criticize academic researchers, including myself, is how do we use your research for policymaking? Often it makes great reading in qualitative research or quantitative research journals, but how can we apply your knowledge to actually better our policies and programs? So that's my diatribe.

Right, fair enough. Valerie is advocating for this and quite articulately, and I know, as a peer researcher, so is that part of I mean, can peer researchers make this happen? Can they hold researchers to account?

Hell yes. Especially like, people like Valerie, who and yourself, James, who have so much experience and who are so well-regarded. I begin to see it as there's a big stop sign in the road, because there's such a depth of experience, especially around peer research and HIV, and people living with HIV who are saying, who have done this for so many years now, who are saying absolutely not, absolutely not, you can't get away with it. You can't get away with it and you shouldn't even try, you know, and I know there's another whole group of us that are trying to do things differently. But also, it is very helpful to know, hey, someone is going to tell you like this is really not all right. I do think the issue of returning results to the community, can mean a lot of different things. Part of me is like, well, if the research comes from the community in the first place, hopefully doesn't have too far to travel. You know what I mean? Like if you're actually doing research in partnership with communities, right, like, that's the ideal, right. But I know with Trans Priorities Project, like it's been such good learning for our team, even though many of us are from the communities that we worked with, we have really struggled with data analysis, because the project is really, as Lori said, off this side of the desk. It's definitely a labour of love at this point. And we did work with someone early on to help us on data analysis, and it didn't work for us, the process didn't work. So we went and we've completely re-engaged in data analysis in a much more collaborative way with our team, but it took us probably another two years. So here we are now, finally feeling comfortable with the work that we've done, and wanting to share it with people, but you also start to feel like, what would it be like now, when we go back four years later, you know, to people and say, we've got our results, you know, like it just what we learnt from that process was actually so different from what we originally wanted and thought we would learn and tried to explore. And so I think it's really changed us as a group of people, it's changed us as a group of community-based researchers, but also yeah, now we're trying to figure out how do we actually report back to some of the people we talked to, you know, a few years ago now? Like I said, some of us I think we feel like, why did it take so long, but there was a group from our team that met every one to two weeks for over a year, you know, and got a stipend of, you know, $1400 each. So like I said, it's not nothing that people got, but it's like, they put in a lot, a lot, a lot of energy and time and commitment. And it's not always so simple. You know what I mean? it probably looks simple. If you're like, Oh, you do this, you do this, and you do this? And then, but being CBR, it's not...

I'm gonna challenge you a little bit on, Zack. You are right, I don't think it is that simple. but there are different ways in which you can share with community, even if it's just the participants, and that sharing actually shows you're accountable. For instance, I am a firm believer in member checking, and what I mean by that is, is going back to the people who gave you knowledge and saying, you know, these are some my preliminary insights. And in terms of accountability, saying it might be take some time before we publish something, because of this, and this, and this, and this, because people talk in the community. And I find that if you do those little things of going back to the community, or even showing a continued presence in the community, not what Val says, you gather the data and leave, I think community members will understand that after four years, it took you a while. It's when you, you know, do research with one community, and I've seen this happen with the ACB community, do research with one community, you gather knowledge, Oh, this is this is great. I'm gonna go into another community, piloting that same intervention, but tweaking it a bit. But wait a minute, you didn't talk to the ACB community whose knowledge helped shape how you did this intervention. Shouldn't you? Even if it's just, This is why we're doing it, we want to do a comparison. We're doing another pilot. So sometimes as simple as just giving a report back in some way.

Yeah, Lori, I hear you. No, I hear you. I feel like part of me, I would say 100%. On a philosophical level, I absolutely agree with you. But then I just see what the other part of what really happens in terms of people's lives that are on the projects. And when you when you do have a deeply community engaged team, your team members and we ourselves are also impacted by what's going on in our lives, you know, so that's where it just gets, I hear you, I just don't know what I just don't know, part of me is like, what are you supposed to say, um, we got delayed by a year because there were a number of like, I'm not saying for this project, but we got delayed by a year because there were a number of crises that people had, because guess what, like, you know, the people on our team are also impacted by structural forms of oppression, like, you know, they mean it. But I don't I don't know. But I agree with you. I do. I'm just trying to figure out how it works in real life.

Yeah. And I do understand.I think we agree to disagree, because I think I am thinking...But I think in the real, too, is I think there's a difference between your tension, where a labour of love takes a long time, I've been in those projects, me and James are on one right now, as labour of love that takes a long time because different responsibilities to other community projects take it away. But there's another thing that I see, too, is, and I think this is what Val is talking about, is appropriation of knowledge without accountability of where that knowledge is going. Or engaging in a data gathering exercise, but not telling community where that data is going to be held. Granted, OCAP principles is very much integral to Indigenous peoples, you know, First Nations, Inuit and Metis in Canada; however, I do feel that there has to be some accountability principles, and how some researchers gather data, sit on it, or use it in ways that the community doesn't know about and move on. I think, I think what Valerie's talking about is not the thoughtful, contentious issues you deal with as a researcher, but I think what she says has value.

So let's hear more from Valerie. So I mean, Valerie goes on to speak about the sacredness of the data collected, and how the knowledge gained is a co-creation.

In this research, every once in a while, just sit back. And when you're looking at these graphs, to remember that we are the voices behind those words, and that we're the spirit behind your graphs. And when you're writing about the results, and when you're presenting it to community, remember, you're actually speaking about me, or one of my peers or friends, and that were in community, and we are listening to you. And we're hearing what you're saying. So just remember, it takes courage for us to share our stories with you, our histories, how we've been treated, sharing our blood with you, that this is a gift that we are giving to you, as a researcher, and to remember that, that we do this together. And I think we all need to take a step back and really look at ourselves and the work that we do, but to remember how it is to be on the other side of the table. Thank you for letting me share my words today.

So Lori, can you speak to what Valerie is talking about here? I mean, it's really about the co-creation of knowledge and gathering and using personal stories of others.

Yeah. One thing I, I've learned a lot from Valerie, in terms of the work she's done as a researcher. And one thing she reminds me is, it's not just also co-creation, it's one where the origins of that creation stemmed from community. So she spoken about it in other presentations, and Doris Peltier, too, it's very much a circular, it has to go back. And it must go back in different ways. I think this goes back to some of the tensions that Zack has talked about. What are ways in which we can give back what is co-created in ways that recognizes that, yeah, research does take a lot of time, and sometimes analysis is not quick and it takes, you know, life gets in the way. But I think more so, too, how can we research be this reciprocal knowledge gathering exercise where people do feel valued, in terms of, I just gave this gift, which is the wisdom that I have, and I know that this research, which I feel will in some way, give it back to the community, whether it is in knowledge that can be used for programming, or even whether it is in mentorship, in terms of we might want to do our own research, can we be mentored in doing that? So how do we figure out various ways in which we can co-create and give back that's meaningful for communities.

Right. Do you want to comment on that, Zack?

I was really appreciating Valerie's comments about data as a gift. It also gets at this idea that the university researchers don't own this information. It's not ours, right? It might be shared with us, but it's not ours. And so this, this leads me to another piece, which for me is that I'm starting to think differently about data collection and research methods, and that is changing me. The further I get into the Shift project, the more I'm having trouble with what I would see as extractive research practices. And so for me, especially around peer research, I think there's such an amazing history and we haven't done a very good job together of documenting that and sharing it together. So I'm personally a lot more interested in approaches that might be seen as archival, sort of oral histories, like what you're doing, James, within the community and access within the community in ways obviously that work for the people who've been involved. And I've seen, say someone like Viviane Namaste, has done this type of work. And so I just think, should we be leaning more or and I know other people do this type of work, but it's just been pushing me to I think how do we do this differently in a way that is not so much like, we're going to talk to you or we're going to talk together, and then we'll have these recordings and then these transcripts. And then right now it's not working for me in terms of how I'm thinking about this, and I'm really appreciate Valerie's words about that.

Yeah, I feel people such as Valerie, and I mentioned Valerie and Doris, because their work has also informed my approach that I've shifted to. I see myself less as a researcher, now more as a storyteller. We use arts-based approaches of narrative, whether with Because She Cares, we're using performance and spoken poetry, and we see it less as research and more as knowledge gathering knowledge sharing. And I see my role less as a researcher and more of a caretaker of people's stories. And it was funny because I remember another pozcast I said, "caretaker" and someone said, It's really interesting, you use that word, because I actually see how you do it. And I thought, it's interesting when you shift the language when you say knowledge mobilization instead of dissemination, if you say knowledge gathering and sharing instead of dissemination, again, and data collection, and especially if you say caretaker, versus researcher, how it also shifts your practice, and how you might be perceived as a person who is part of a collective caretaking people's stories.

Okay, kids, that's fantastic. We're gonna leave it there. What a great chat. That was wonderful. I do, I do have to do my five rapid fire questions. These are the same questions that I asked Lynne and Tim. So Lori, I'll start with you.

Why me? Okay. Zack's better at this, start with Zack.

Okay.

All right, I'm going to start with Zack. Gymnastics for track and field?

Track and field.

Okay. There is no wrong answer. Okay, truth or dare?

Truth.

Intelligent or funny?

Oh God. Oh, please don't make me—I don't know about that one. It feels ableist to say intelligent.

Oh, wow, snap. Okay, all right. Passenger or driver?

Driver.

Rich or successful?

It's so bad that my first reaction I'm like, Oh, don't say that. I'm like, what's the difference? No, no, no, that's not true. Successful? Neither?

Thank you, thanks, Zack. Lori, Lori, gymnastics or track and field?

I am Jamaican. So, track.

All right. Truth or dare?

Dare.

Intelligent or funny?

Funny.

Passenger or driver?

Passenger.

Rich or successful?

I will say successful, but I'm—how do you define success? It all depends.

So are you saying successful or rich?

Well, today I'm successful in answering your five questions.

Thank you both very, very much. Thanks for coming on the show. That was fantastic.

Thanks for having me, James. I really enjoyed talking with Zack. It was awesome.

Thanks very much, Lori.

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.