S2E11 The CHIWOS Movement_10-28-2021
8:43PM Oct 19, 2021
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.
If you go back to the beginning of CHIWOS, and what our overall our main objective was, it was to actually develop a woman centered HIV care model. This is a model that is responsive to the unique health care and social care priorities and needs of women living with HIV. We were successful in doing that and we're still continuing to develop and implement this woman centered HIV care model. And we developed it based on those key findings from CHIWOS.
We have a great show for you. This is pozcast. 2021 is the 10 year anniversary of CHIWOS, so we are going to celebrate. What is CHIWOS, you ask? Well, none other than the largest community-based cohort study of women living with HIV in Canada, which is an acronym for the Canadian HIV Women's Sexual and Reproductive Health Cohort Study. This is a groundbreaking and life changing study focused on the unique HIV care needs of women in this country. And CHIWOS has not only done great things in its own right, but it's set in motion the creation of numerous other initiatives focused on women's centered care. 14,022 participants were recruited across three provinces, with more likely to come, and over 40 peer researchers are hired, trained and engaged in a project designed by, with and for women living with HIV. Today I have two fabulous guests who are going to help us shine a light on all things CHIWOS. Breklyn Bertozzi is an HIV positive mother of two who founded and runs a women's support group in Hamilton Ontario, is a peer researcher on the CHIWOS study, as well as a focus group facilitator and a peer engagement coordinator on two other studies. Joining Breklyn today is Mina Kazemi, a research coordinator at the Women in HIV Research Program at Women's College Research Institute, and the Ontario Provincial Coordinator for CHIWOS. Welcome to pozcast.
So congratulations, you guys. 10 years, like wow. Is the team doing anything to celebrate?
Yeah, we are doing some great stuff to celebrate, actually. I like to lead or facilitate a little bit of art therapy, I actually aspire to be an art therapist. So CHIWOS has asked me to lead all the peer researchers in Ontario for CHIWOS in an art session. So we are in the process of planning and sending little packages of art supplies, and also sending a gift card for a meal from Uber Eats. So we will be celebrating together virtually this year.
Oh, that's great.
Yeah, and, and that's part of a bigger, a bigger initiative for our 10 years of CHIWOS celebration. It's called the National Women in HIV workshop series, which Breklyn is a community advisory board member on, I'm supporting the coordination of, and we're aiming to have this to be 100 plus person event, virtually cross country. Everyone's invited, from academics, to clinicians, to community members to women living with HIV, and it's our chance to showcase CHIWOS' results there are our learnings and take it one step further. Take it one more step to talk about how we're actually going to be continuing to impact policies and programming and care that affects the lives of women living with HIV. So Breklyn, knowing that she's so talented in her facilitation skills and art, I'm really excited to have breckland lead a facilitated art workshop for our Ontario PRA team—our peer research associate team—as one as one part of it all.
Well, that's great. So let's take a look back at how we got here. So why was CHIWOS necessary in the first place? Like, what are the issues?
Yeah, maybe I'll start and then I would definitely love to hear from Breklyn. So CHIWOS started 10 years ago now because there—we saw that there were gaps, there's gaps in knowledge, gaps in representation, so women are not being represented and research, and gaps in care and women not receiving the care that was ideal for them. So this was our approach or our form of resistance to say that things need to change, we need to bring people together to optimize the health and care of women living with HIV. And we know that women have, well, they represent about one quarter of people living with HIV in Canada, and they have unique social and health needs and priorities. And Breklyn I can, I can share some of the some of the priorities and needs that I understand from the research we found, but I know you can also share from your own experiences and from your peers' experiences, for example, the high levels of trauma, and depression and anxiety and forms of isolation. And this results in lower levels of ART use and viral suppression, in comparison to men. I'll leave it at that, but Breklyn, you take it away.
Yeah, I would say what I can say about this is that, while I was out there interviewing participants, the need was seen, you know, and, and each interview almost became a peer support session. And, and I felt the need for me to be out there in the community and, and getting all this information and also just sitting and listening and, and relating, as a peer, it was really, really a lot. But it was it's you could see, you could just I could just see the need for it. Most of the time, they didn't never want me to go, they wanted me to stay and support them and continue.
So coming out of the study, like what would be some of the main messages that you can tell us today?
Yeah, so I guess our if you go back to the beginning of CHIWOS and what our overall our main objective was, it was to actually develop a woman centered HIV care model. This is a model that is responsive to the unique health care and social care, priorities and needs of women living with HIV. So we were successful in doing that, or we're still continuing to develop and implement this woman centered HIV care model. And we developed it based on those key findings from CHIWOS. So some of those key findings are that going back to that that overwhelming experience of trauma and violence, over about 80% of women in CHIWOS, in their adult lives had experienced some form of violence. And this is much, much higher than the general population of women in Canada. We also found that women's they have social social needs and priorities, many are caretakers and they're, as Breklyn mentioned, she has to run off right out right at time since she's going to pick up her daughter from school. So we have caretaking responsibilities, there was food insecurity, we found high levels of food insecurity. We found high levels of education, women are educated, yet they're getting they're getting jobs that aren't reflective of their levels of education. So there must be something something structurally wrong, where employment isn't supportive of women living with HIV, or incomes aren't high to support women living with HIV's lives. We also found that women health, women's health, for example, pap testing, mammograms, talking about menopause and menstruation, those are gaps. So about 63% of women in Ontario receive pap tests annually; however, that's not meeting the Canadian guideline recommendations of yearly pap testing. And when we asked when we asked women like, Why aren't you going for a Pap test? There were answers around, my health care provider hasn't mentioned it to me, or the fear of HIV disclosure or the embarrassment. So women's health issues and gaps in care—and in mental health. I know Breklyn and I we've had many conversations about what participants have expressed around their mental health, these feelings of isolation because of stigma, and we're seeing that I can I can probably quote it that. Let me find it exactly how many people experience depression in CHIWOS. So it's depression and symptoms are about 48.6% of women in CHIWOS, reported depressive symptoms. And then, so the personal mental health, women's health, and then HIV care is actually quite good, but it's more than just your HIV care. It's also —it's the whole picture. Were that are that top piece or that? Yeah, that final piece of the woman centered HIV care model is peer support. So there were there were gaps in peer support, and not having those peer capacity opportunities and capacity and leadership opportunities.
Was that a surprise, that HIV care was so good? Were you expecting to find that?
Yeah, what do you think Breklyn?
I was. I think that we've kind of come to a point when we well, at least when we started CHIWOS that, you know, we've mastered caring for the HIV now it's what, what else do we need to care for? And we're realizing the different things now that haven't been addressed, and that we can start to address and start to offer holistic services for.
Right. Was there something that, Breklyn, when you were interviewing that surprised you?
No, not really. I think as a peer I just I knew the realities. And and I think with with the research, I could sit here and tell anybody the realities of it, but when you actually do the research and get the data and the numbers, then people realize the depth of the situation and the severity of it. So I think I think I was prepared.
Right. So really the data is, the data is sort of telling you something you already know.
So how did you, just out of curiosity, how did you get into this work, Breklyn?
Um, so actually, when I was first diagnosed, which was in 2010, I met a wonderful lady who was involved in peer research, and she was the first woman that I ever met living with HIV—the first person other than myself. And I was a participant in a study of peer support, and so we met, you know, bi-weekly, and I was in, you know, a rough situation going through my PTSD and, and other life circumstances. And slowly, she was able to just, you know, help me rise above and become the person that she saw that I couldn't see at the time. So with her help, and others pull myself up, and she noticed, she recommended me for a peer research position.
That's fantastic. What about you, Mina? How did you end up here?
Um, yeah, that's a good question. And Breklyn, I don't know if I I don't know if I've ever told you about how I ended up here. So my first of all, thank you for having me on a podcast by and for positive folks, I think this is amazing what you're doing, James. So I really appreciate you letting me into your space, Breklyn and James, as someone who is not living with HIV. I first was introduced to the idea of community-based research specifically in HIV when I was in my undergrad. I had a very privileged undergrad being able to study at University of Toronto, and I was awarded a scholarship from the Canadian government to work in Cape Town in South Africa with the Desmond Tutu HIV Foundation. And there, I got to experience a peer-based model that brought peer support and access to medications to the community in a township where prevalence rates are quite high in terms of HIV. And this had a huge impact on me, I was at a young transform—a very impressionable age, and I was specifically really motivated, inspired by some of the relationships I made there. Specifically a woman, a good friend of mine now, who was a, who is a single mom, a black single mom living in a township, living with HIV, and just her passion, her her ability to connect issues and motivate her community, and push through the stigma that she faced on a daily basis made me think there's a lot to do, and there's a lot that we can do as allies, especially to combat that, that structural inequalities that I saw so rampant in South Africa, where South Africa is still so socially and economically segregated with the long lasting effects of apartheid. So I was really excited by her impact as a community health worker, I saw her as almost like peer researcher, and I knew that this is, yeah, this is where I want to be this is really exciting work. And peer researchers have such a amazing role and, and expertise, to be able to be so close to the ground, to use their experiences to connect with others to achieve a bigger goal like, like optimizing the health and well-being of individuals.
Absolutely. So you know, the peer researcher role is so integral to community-based research and I wonder, you know, like, what was it about the community-based research approach that helped make the study so successful? I know peer research certainly is one, but what else about this the CBR methodology supported this study?
The people, the other people, too, like Mina. And Mina and when you say that, thank you for having you in our space, this is your space too, you know. You're an ally with us, and you're a very special woman, you've been with us throughout this process and have become like family. And I think, you know, the research assistants and the principal investigators, specifically on CHIWOS, have been so just loving and caring and empathetic and understanding, and approachable and, and just like, you know, and wanting to treat us as partners in this research. So that really made a difference in this study.
What do you think, Mina?
Breklyn, you're making me emotional. But wow, I couldn't have summarized it better in saying that it's about the people. I think CBR, or community-based research, is all about people. It's about relationships, it's about bringing people together in ways that are supportive. It's so much about community care, it's so much about these like care on top of care on top of care to make sure that everyone is cared for. And being flexible. Like oftentimes, we have to remember that the process is as important or more important than the outputs or the final the final perfect published paper that our academic institution wants or our funders want. It's so much about the people. It's about creating supportive structures that bring people together meaningfully so that we can bring folks that haven't had a chance to sit out a decision making table and allow them to speak up. But maybe that took a couple meetings beforehand, and a couple of hours working with them to get to that point to have the confidence to speak up, and a debrief meeting afterwards to make sure that there wasn't harm done or anything that felt uncomfortable or triggering done at that meeting, or that decision making table.
Right. Well, I mean, CHIWOS is a large study, I mean, that's like, like over 1400 participants, and they had steering committees like national and provincial, or community advisory boards and admin staff and coordinators to talk—you talk about the people. So how did you keep all those people? How does that machine work, that structure? How did that support permeate through that large structure, Breklyn?
Like a family unit. You know, it has its ups and downs, there's some mess involved, but at the end of the day, we all come together with passion for the work and, and that's why we're here and we realize that we make it work.
Yeah. And maybe to add to that, I think yeah, I think with any bringing any group of people together with differing opinions, and different living, lived experiences and ways of knowing it's important to have some like guidance or some like grounding, grounding principles. So CHIWOS, the development of it, was so important to why it was so successful, or why we're still being so successful. We sat down with many different thinkers from the very beginning, and engaged many different individuals at the beginning to develop the vision, the mission, the guiding principles, and to apply those guiding frameworks and principles throughout took a lot of intention, and a lot of resources, as well. So some of our key guiding frameworks were ideas and concepts of intersectionality, social justice, the meaningful engagement of women living with HIV or MEWA [Meaningful Engagement of Women Living with HIV/AIDS] or GIPA, social determinants of health, anti-oppression...So to give you an example, there was training that was mandatory for all for all staff and refresher training as well on anti-oppression—how to be an active ally, how to combat systemic racism, and we yeah, we put money towards those trainings and time for all staff to be trained and retrained, so those principles can be not only used at a personal level, on a one-on-one and level with participants, with team members, but also as a way to think about our analyses and how to interpret findings from those frameworks.
Right. Well, that foundational work has obviously paid off great dividend. You know, you mentioned MEWA before and I just want to go back to that, because I think it was CHIWOS really that coined that that acronym, and you know. So why was it necessary for the your CHIWOS team to move beyond GIPA, Breklyn?
I think that, you know, the history alone of HIV and AIDS, and, you know, the focus as well, it hasn't always been on women. And so, so we wanted to kind of move the focus towards women and we wanted to represent the unique, you know, needs of women and the unique things that we have to offer to this type of research and to any peer related or community-based related project. So I think it was to, to put kind of more focus on women where it wasn't happening before.
Right. Fair enough, Mina?
Totally. And by women, we also, we also like to be very inclusive. CHIWOS is an inclusive study in that we define women as women, trans women, cis women, women with disabilities, abilities, diverse women in terms of ethnicity. So we are, we want to be as inclusive as possible, and with that, I think the meaningful engagement of women living with HIV, we also consider like the intersectionality of that. So how do we meaningfully engage trans woman and CHIWOS, this is one example, that CHIWOS created its own sub-study or a sub-body called TWIRI, the Trans Woman and HIV Research Initiative, for trans woman, by trans woman to look specifically at the study of the data pertaining to trans women and into interpret and make use of it in ways that make more sense for those communities. So part of meaningful engagement also means making sure that there's space for for those for those folks in those different diverse communities.
Oh, that's amazing. So let's talk about the peer researcher approach of CHIWOS. And I bring this up, you know, because the inclusion of peer researchers, of course, is key to the success of most CBR studies, good ones, and I've also just finished up a two-part series, talking with other peer researchers and talking about peer researchers. I'm all keyed up on this topic, so bear with me, but I was wondering, maybe because I know Breklyn, you've written a poem about this very topic, if you might give us—if you might read it now, so to give some context around some of the following questions...would be wonderful.
Sure. Okay, so the poem is called Accredited By Life, I should have worr my t-shirt. I have a t-shirt that says Accredited By Life.
That would have been lost on our audience.
Oh, that's true. I can see you, but they can't see me. So Accredited By Life. My life experiences make me qualified for the work that I do. My struggles, health issues, trauma, and most importantly, my resilience tha has gotten me through.
I am a peer researcher, or PRA for short. Proud, passionate and grateful are some of the words that come to mind. A strong woman using my skills and research to advocate for good health and support for my peers and I.
There are many other PRAs advocating for themselves and their peers just like me. That are part of the research process that is building their capacity.
A team of people with different skills working for what's right. Coming together with similar purposes and values, a common goal and fight.
Us PRAs are a team of beautifully broken pieces that have been put back together to help others. A close community like family, my sisters and brothers.
Living libraries giving and taking. Learning from all the stories and realities of what we're facing.
However, the dark side of this work can't be denied. Substance use disorder, trauma, violence and depression, turning into real people right before my eyes.
I wish I would have known then what I know now. The judgment and stigma in my mind, I wouldn't have allowed.
The oppressive form in which we get paid has really made me frown. Sometimes the same system building us up can also bring us down.
The hours, the love, the sweat and tears often go unseen. But it's worth it because of all the beautiful stories and what they mean.
I'm a liaison between my peers and service providers, doctors and policymakers. Turning the pain, trauma and beauty in their words into data and academic papers.
With the goal of bringing myself and my peers good health, harmony, peace and ridding them of strife. I do this work with love, empathy, gratitude, and because I'm accredited by life. Thank you.
Wow. Well done. Yeah, that's really great, Breklyn. Was this poem, did you write it because of your experience in CHIWOS?
I think at the full experience, but I definitely think CHIWOS was my foundation. So I know, I know, James, you met me in the beginning of all this in Halifax, and at that time, maybe you didn't know it, but I was a mess, still, and my capacity was low at that time, but I feel like throughout the time that I was with CHIWOS and I'm still with CHIWOS now, but it really built me up. And it really built my capacity to move on to other studies and other projects, and be able to function in those projects so well.
Right, right. Well, those themes, I mean, are universal for most PRAs, right? I mean, the power and resilience drawn from lived experience, and the positioning is a bridge between two worlds and, you know, reciprocal learning and unseen labour, and all of that is just as fantastic. So reflecting on that poem, I wonder, like, what would you say was successful for you about the CHIWOS approach?
I really think that it was all about, like I said, the people and the support, right. So you know, you heard all of the different things that women living with HIV have gone through—the trauma, the anxiety, the the mental health issues, the substance abuse—you know, we are those women, you know. So knowing that, and having that support throughout our different intersectionalities, was really key. And understanding that and, and I often say I think that's why employment of people—women living with HIV is so low, because that doesn't exist in other employment settings like it does in CHIWOS.
Right. Right. Talk to me a little bit about the accreditation. Accreditataion, like because that's the title of the poem, of you know, the Accreditation of your lived experience, I guess, versus academic experience?
Yeah, I think that, you know, when, when you're you're submitting to research ethics, or, or submitting journals, they always want titles of people, right? Like, well, you know, what makes you qualified to do this, right? And I often like I really do think that the experience of my life that I bring to this, this study, this research, this community, is detrimental and should be recognized more and should be more credited.
Right? And Mina, when you hear Breklyn read this, this poem, what's your reflection?
Yeah, wow, Breklyn, I yeah, I'm so amazed by Breklyn's ability to produce art. I've seen her artwork, her, like her paintings, and just this poem, it's just, it's amazing. Breklyn, you're incredible. You're so talented. And it for me, I mean, I'm really stuck on this, this piece around the bureaucracies that, yeah, Breklyn has to face and other peer researchers have to face. And I think this is one of the key tensions of CBR that is, oftentimes our academic institutions and our funders don't—aren't familiar with it. So it requires people and dedicated staff to work with our finance departments, to work with our, our funders and academic institutions to ensure that credit is given where credit is due. So as Breklyn gave the example of a paper, I remember supporting a paper with our Indigenous colleagues, and we wanted to ensure that everyone who gave both oral contributions, but also writing contributions were all part of the academic, that the author list and that, for example, that was something difficult that we had to push back on. Or, for example, hiring practices and employment practices, to creating job titles and job descriptions that value and compensate adequately lived experiences. These are all things that require work and, and advocacy, and even about whose knowledge we we value, for example, that we know that there's systemic racism, and that creates more barriers for for certain individuals and the meaningful participation of Black and Indigenous leaders and scholars. So how do we ensure that we combat those systemic racism in in bringing more in different types of knowledge? And having that so called, published or or honored in an academic institution? Yeah. And I think CHIWOS, I think CHIWOS is amazing in the sense that the strengths-based piece that Breklyn also spoke about finding strengths in each team member and finding the opportunities that that those strengths match up to.
Yeah, CHIWOS feels like a movement.
That's it. That's why it's not over, James. It's a movement, it truly is.
It's a movement. That's right. So you write, Breklyn, the oppressive form in which we get paid has really made me frown.
I knew you you would bring that up.
What's made you forwn?
You know, I really have to say in the beginning of CHIWOS, payment was really tough. You know, working with different hospitals and colleges and universities, there's a lot of policy and red tape and, you know, different departments that you have to jump through to figure things out. And, you know, in the beginning, it was, you know, mailed to us, and we would get paid like 60 days after the work, but, you know, I have to say the principal investigator, Mona Loutfy, really, really, really fought for us to get paid very fairly with finance, and has really changed the way we get paid since then. But there's also stuff like the fact that this is such part-time work, and and we talk about titles, see, so I do I work on many projects, and I have different titles within that project. So what's the overarching title? So I made up my own title that I'm a Community-based Research Consultant. And so, but it's not a job as a whole to these universities and there's no health benefits. And so things like that, that's what I mean.
Yeah, that's, that is tough. I mean, the other I don't know if you've listened to them, but in the other pozcasts, we sort of go into depth over that, and it's a struggle right across the country, right? I mean, so these large institutions, it's really hard to get any flexibility. But that's great that you've, they've made some changes. That's good. So what would be, like there's so many benefits of working as a peer researcher, and I'm wondering, what was the biggest struggle? Was it the payment?
No, no, I don't think it was. I think, honestly, I would do this work for free because I'm so passionate about it.
Don't say that [laughing].
No, no, I, you know, like, as a volunteer. I've volunteered my time to this community many times, I think that it's a really good thing that I get honored for my time and my expertise, and the things that I put in, because I put in a lot of effort into this work. I think the biggest challenge, sometimes for me, is saying no to things, you know? I you know, people have noticed my abilities and what I bring, and so I'm in demand a little bit. And I say yes to everything, and then I realize, Oh, no, I've double booked myself. Oh, no, you know, so that and, you know, work life balance, just like everybody else, for sure.
Absolutely. So Mina, I have a question, it's gonna be very difficult for you to answer which I, from the very little I know of you Mina, but what was your biggest challenge for you working with peer researchers?
That's a good—a big question. I think that same piece not to be redundant, but I do share what Breklyn saying about how boundary setting is sometimes difficult. And I think this goes for both my role, but also for the peer research associate role, as Breklyn just alluded to about saying no, and having boundaries when this work does not just go between nine and five, but we know we're working with participants who sometimes need to meet in the evening, or peer researchers or myself when we have other competing obligations as women, as caregivers, etc, that sometimes this work needs to go beyond nine to five. So I think wearing multiple hats, and seeing both myself, but also my colleagues or my peer research associate colleagues wearing multiple hats, and preventing that burnout has been the hardest. And that there's so much unseen and uncompensated work, I think in research, in CBR especially, because so much of it is process and relationship based. That doesn't happen in those paid hours that our our institutions see. I think those are the biggest challenges and trying to feel trying to support us all through it. And I couldn't give you an example like last week when I felt like I was I was very close to burnout and Breklyn took time out of her evening, and reached out to me, and that meant the world when I really needed that that uplifting. She was there.
So what would, what would—there's tears going on here, folks. So I'll start with you, Mina, I'm gonna ask the same question to both of you, but what recommendation would you make to other CBR teams who are starting out working with peer researchers? And I'll start with you, Mina. Just the one.
Just one recommendation? Oh..
Just one, the most pressing that you could think of.
Yeah. Make it your top priority. Like don't make this an afterthought. If you're doing CBR, do it right. So that means prioritizing the people you work with, prioritizing all levels of people you work with; understanding their competing priorities, making sure sure that you've created structures that are collaborative, giving resources to capacity building and career progression. Peer researchers don't want to stick—I don't want to speak to you for you, but Breklyn, you have potential to move on and do other things, like you don't want to be stuck in one position. I think we all deserve career progression. So making sure there's resources, and capacity building opportunities and mentorship to get to that next step, whatever that looks like for the individual. So having that dedicated time and resources to make CBR your top priority.
And what about you, Breklyn? What recommendation would you make to other CBR teams who are starting out working with peer researchers?
I just—I don't know, I think Mina explained it so well. Just to care about, genuinely care about, the work that you're doing, and the people that you're working with, but also to put yourself as a priority as well in at all, you know, because this work can be really heavy. So making sure that you're caring for yourself, and like Mina said, if you see another co-worker who you notice, Man, she looks really tired, you she could be going through some stuff, reach out, you know, care about each other, care about yourself.
Okay. So should should research teams, and I'm assuming the answer is yes, when working with women who are peer researchers, like what accommodations should they make, or what should they look out for? How can they better support women? Breklyn?
How can they better support? I mean, I have to say CHIWOS has been the gold standard. So if you want to better support peer researchers who are women in research, look to our model.
Okay, and where can we find your model?
On the CHIWOS website?
Website, exactly. www.chiwos.ca. But there's something that I'm—Breklyn, I think you and I spoke about and maybe you even coined, called, we call it trauma- and violence-aware research. And I would love to just share a little bit about it, but then hear Breklyn's thoughts to explain it further, but what we thought about was that because women and women living with HIV experience violence and trauma at overwhelming rates, there needs to be—we need to respond to this in all of our practices, not only in clinical care, but also on our day to day work and relationships. So, trauma aware trauma-informed research would mean that we're aware of the inherent power dynamics and the impact of those power dynamics. We can't just say that there's no there's no power differentials between our PI and myself as a coordinator or peer researcher there are inherent power dynamics, but there's ways to try to mitigate their impacts. For example, providing the social support, the community care, building the trust, and being supportive of life circumstances and in giving the accommodations that everyone requires from time to time. And then also that also involves like harm reduction and having been trained in harm reduction, and sometimes that involves de-escalation training, I'm sure, Breklyn, you've had experiences of working with participants where they've been triggered and having the tools to support them. This is all trauma and violence-aware research which we love to call it.
Yeah, definitely. I think I talked about—I think I talked about it already and like I said, CHIWOS has been the gold standard, like literally I have Mina's cell number and we text each other, you know? It's just so supportive and and even though there are those different different levels of you know, the the principal investigator—what did you call it? What's the word? Hierarchies or...?
You don't feel it in this study. You really don't. We're all just treating each other like we're just as capable and and you know, ready to do this work as anybody else.
And we all have something to offer.
So CHIWOS, you know, 10 years in, are there plans to just keep it running indefinitely? Is that the goal or is there going to be a wrap up? Mina?
Um, so I had mentioned that I love the idea of the movement—CHIWOS is a movement that's it, James. So I hope the legacy of CHIWOS will never end and the work won't end until we do reach that vision of optimizing the health and well-being and priorities and goals and visions of women living with HIV and Canada. So I, I saw CHIWOS in three different phases, where it started off back in 2010-2011 with the formative phase of bringing people together and and listening to a lot of listening to hear about what the gaps were for women living with HIV in Canada. And then the second phase was the quantitative survey phase where there was three waves of data collection with 14,022 women living with HIV, cis and trans across Canada. And there was also some qualitative research with body mapping and other forms of research, for example, our Indigenous communities use arts-based methods to answer those same questions in the survey. And then our next phase, or where we're at right now, is this knowledge translation and exchange and mobilization phase, where we have so much information, and we have these stories that women have trusted us with, and we're trying to use them in a way that, that that serves our goals of optimizing the health and well-being of women. And so I don't think it's going to be done anytime soon. We have publications, there's over 60 of them right now, but we continue to publish. We're hoping that this national workshop series will be a way to come together to create goals to impact policy and programming. And then our woman centered HIV care model, which we're really excited about. Breklyn, you've presented at all different types of spaces—international, national, local—so there's so much to be done there as well.
Wow, I mean, yeah, that CHIWOS, that women centered healthcare model is amazing. And you've also developed, on top of that, two tools, right? One for healthcare providers and one for women themselves. I don't know if you want to speak a little bit about that, Breklyn?
Oh, yeah, I think that was the main goal of CHIWOS, to create these toolkits and to have this model. And it's, it's amazing and like, I know myself, I was involved in every step of the way, for both the model and the toolkit. So it is completely peer reviewed. And, and it's great work and I'm honoured to be able to present that work around the world, like there's, there's a lot of interest in it, and it's taking off and it's awesome. I love it. It's gonna make great changes.
Where can you find these toolkits, again, are these on the CHIWOS website?
Yes, we have a tab on the CHIWOS website called Woman Centered HIV Care, all of the the link for the toolkits which is hosted on the Center for sorry, the Center for Effective Practice website, thhey supported us in creating the toolkits from a bit more evidence standpoint. And then as Breklyn mentioned, it went through many rounds of peer feedback, focus groups with women across Canada, to create these two toolkits, and when it's also translated into French. And another part of CHIWOS, so the next steps of CHIWOS, is that these toolkits and the model are being assessed and adapted for other key populations. So for trans women living with HIV, for Indigenous women, there's interest in developing a model for ACB women, or African, Caribbean and Black women. So there's lots, there's lots in the pipeline.
Oh, wow. That's fantastic. That's fantastic. And this has been fantastic. I can't thank you both enough for coming on today. I'm going to finish up with of the five rapid fire questions. I will start with you, Mina.
Okay, let's do this.
All right. Rain or shine?
Oh, shine 100%.
Ask questions or answer questions?
I'd rather ask the questions.
Okay. Introvert or extrovert?
Extroverted. Everyone knows that about me.
Touch or taste?
I'm a huge foodie. Love, love food, so taste.
Save or spend?
Saver. All right. Over to you, Breklyn. Rain or shine?
Shine. Ask questions or answer questions?
Introvert or extrovert?
Two extroverts. Touch or taste?
Taste. I'm also a foodie.
Save or spend?
I'm a saver.
Saver, wow, very similar. All right. Well, thank you both very much.
Thank you, James. And thank you, Breklyn.
Yes, thanks for having us here. This is great.
That's it for us this month. Thanks for tuning in. We hope you'll join us next time on pozcast. And if you have any comments or questions or ideas for new episodes, send me an email at firstname.lastname@example.org. That's the number four and the letter U. Pozcast is produced by The Positive Effect, which is brought to you by REACH Nexus at the MAP Center for Urban Health Solutions. The Positive 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.