SFPIRG x GSS Research Ethics: Empowering Community-Based Ethics
5:27PM May 11, 2022
research ethics board
Hi everybody, good morning. Thanks for your patience in the waiting room. We're just gonna let people kind of get in and settled. So we'll be starting probably just after 11
So I'm, I'm 100% positive that more people are going to be trickling in over the next little bit. But just to make sure that we have time for all of the great presentations and conversations. I'm going to kind of like get us slowly started. So a few a few logistical things. So if you want to use the live transcript feature that we have for the session, in the upper left hand corner of the screen, you'll see like an otter AI CLICK HERE TO OPEN live transcript and that can pop open a new window and give you a really excellent live transcript of everything that's happening for folks who are going to be speaking whether our presenters or folks asking questions if you can just speak not slow like slowly but just like a bit articulately. Like, don't feel like you're in a rush to get things out. We don't like to rush around here. But that really helps the, the AI to capture exactly what it is that you're saying. And I know that I definitely always encourage chatting in the chat. I'm a very chatty person in the chat myself. So feel free to support people who are speaking. You know, if you have if a question pops up during the course of Nick and Scott presenting, feel free to drop it in the chat and I'll make sure to pull it out and log it for when we get to the q&a session. Or if you want to like jump in with with anything that you want to say in the chat. Then please feel free when we're in these digital spaces, figuring out ways to like be in good relationship to each other in these conversations is really important. So hi, good morning. Or good afternoon, wherever you're calling in from. My name is Chantelle, I use she or they pronouns and I'm the director of engagement at the Simon Fraser Public Interest Research Group or the SFPIRG. And I've been delighted to work alongside Reese and Cecilia from the SFU GSS on getting this series of events planned. This is a really important area of work for both of our organizations, as researchers and as people who are really oriented in social justice and equity work. Thinking about how it is that we do research use research in good or at least better ways all the time is really important to to our organizations. So during the course of the series, which we're launching today, we're gonna be talking a lot about different aspects of ethics and consent and how we use research and data and all these different facets of research to make a bigger, better impact on the world that we're researching in and with. So, I'm so pleased that we're joined today by Scott and Nick, who have been very involved for now many years in building the research one on one manifesto for ethical research in the Downtown Eastside Scott. I'm sure it's going to talk lots about it, but started it alongside with many members of the Downtown Eastside including Nick, during his own graduate studies at SFU. And SFPIRG, particularly Kalamity at SFPIRG were very supportive of that project, recognizing you know, that the there has been so much harm that has been done to members of the Downtown Eastside community through research, particularly urban indigenous people and people who use drugs and people with disabilities and low income and unhoused people you know, the list goes on and on that research has been really important in the Downtown Eastside. But has also in a lot of cases been really harmful. So I guess, thinking about the context of research in that way, and you know, kind of how it is that research occurs. It's really important to acknowledge that all of this is happening, you know, on unceded and stolen land as an organization. We've been talking a lot about territorial acknowledgments and how they become kind of this like obligatory checkbox that happens at the beginning of meetings or events or sessions.
But we really want to ground this, this what's happening today in the fact that all of us are trying to do work on unceded territories and really invested in doing that work in in better and more empowering ways, which is why we're all here - to figure out how we move beyond these ideas about doing things more ethically, to actually doing them more ethically, and all of what comes along with that, including, you know, lots of us are doing work. I know many people in this room are doing work in some kind of like land based or indigenous territory. Or sovereignty kind of work. So I'm really pleased that all of you are here to join us today. So I guess with that, I'm going to turn it over to Nick and Scott. I don't know if you folks want to start by introducing yourselves or if you want to introduce yourself when you get started with your part?
okay. Awesome. Thanks, folks. Go right ahead.
Hey, Nick, how about I'll say hi first and then you because then you're going to talk about your your stuff. So my name is Scott Neufeld. So glad to be here today. And yeah, really grateful to Chantal and SFPIRG for the invite. I grew up close to Vancouver and the unceded ancestral territories of the Kwantlen and Kate sea on Langley. I was privileged to do my graduate studies at SFU. And then more recently, in the last a year and a half have lived out here in Ontario, in St. Catharines. I'm a faculty member now at Brock University teaching community psychology. Also still a PhD student at SFU because I'm not yet done with dissertation, but you know, maybe one day. right now so I live on the ancestral territories of the Chanahtan and Mississaugas oft the credit, the Anishnaabe, Haudenosaunee, and Ojibwe peoples and here we've got a bunch of different treaties which a little different than unseeded territories out west where I used to live. So some of the the treaties that we we often acknowledge and think about is the dish with one spoon wampum agreement between Haudenosaunee and Anishinaabek peoples that predates colonial treaties and was a an agreement between sovereign nations to say how are we going to share these territories in a good way that can benefit both and then later on, colonial folks were included in those treaties. So share that as a sort of an alternative story to some of some of how we think about these relations. It's not always just about colonial folks doing their thing. Anyways, Nick, do you want to share yourself?
Hello, my name is Nicolas crier. I'm Cree from Southern Lake and treaty six in Alberta. I've been out in Vancouver for about 15 years now. On the unceded territories of the Musqueam. Squamish and Tsleil Wautuths people's. I work with Scott and was a co author on that manifesto for ethical research in the Downtown Eastside, also known as research 101 which I'm going to talk about in this slideshow and I didn't have a number of other peer work around here, like upon magazine, the university's UBC and SFU and some of the health authorities doing overdose response type work and harm reduction. And I'm just gonna share slideshow with you he tells the story of of our of our project here, right from the workshops to today. And then Scott's gonna take it from there I'm ready to roll with that slideshow.
Thank you. There we go.
So we have research 101 and the CREW project would like to first acknowledge that this presentation takes place being held on the ancestral territory of the Squamish, Musqueam and squilla two peoples with Coast Salish, whose great sacrifice and hospitality we're both honored and grateful for the space we choose to call it Vancouver, Canada - that it is humbly respected and sacred and unceded We also commit to the Truth and Reconciliation Commission of Canada with its marginalized indigenous voices which is a form of open dialogue and engagement with traditional and oral protocols, creative writing small carry on. This is a story of how a few eager minds from many different walks of life once came together created something the whole community needed deserved and which is sort of binding began to materialize before our very eyes, something the whole community could see and use and be proud of as an original grassroots movement that was created in collaborative efforts by people who care deeply about this neighborhood and its future. This is the story of research 101 and the building of the Downtown Eastside community research ethics workshop. slide please. So way back in 2017 Scott, bright young PhD students studying social psychology at Simon Fraser University, and Sarah, a bright young lady from an organization known as high street Maddy, we're having a discussion about research and cultural production in the Downtown Eastside and how many people often claim that they felt they'd not been respected by research and researchers were people extracting cultural materials from this neighborhood and then going away and not using this material to advance their illustrious careers. Out there in the real world. It was this so Downtown Eastside are seen by these people to be some sort of bottom of petri dish, with research being so entitled, as it were, could always rely on to have enough social ills, ie poverty, drug use mental health, complexity, crime, etc. from which to draw. There are innumerable research projects and personal artistic expressions. Scott and Sarah agreed at once that they disagreed with the status quo and so decided to see if they could do something about like please but that is how the very first series of research one on one workshops came to take place. We gathered in the old hive st MADI space on Powell Street one night a week for five weeks for about two hours on a diverse group of local residents all of us engaged in community in some form or another, with what we discover is a singular common interest to do something about the research situation, which had gone on for far too long already. After six four hour discussions, note taking the entire time, it appeared that all of us was and still are committed to change for the better regarding the inundation of our neighborhood by people living outside our neighborhood, in its current context of hyperbole, unreasonable amounts of research and research, much of which did not ever really add up to well many had for a long time. Like 50 years almost from a sociological perspective, as long as I've been around. No, a lot is visibly notable is like, wow, this amazing research accomplished. It's like here we have a breakdown of some statistics to give you an idea of the sheer volume of research taking place in the Downtown Eastside. And as you can see, our community is very interesting to researchers from academia to commercial real estate interests, disinterested in involved a lot of collaborative processes, including the hiring of peer research assistants. And liaisons which has resulted in a lot of people getting published and educated and paid and getting important position to power. What is lacking felt by many involved in this research is a coordination of the connection between those peers and the research people and ethical sort of coordination funded, publicly monitored under some sort of governance structure. In short, we needed to figure out what we're willing to allow and what we're not able to permit as a community for whatever reason, the community is amazing. slide please.
And that's how, that's how the manifesto was born. THE END. Just kidding, folks. We have not even begun to see the unimagined potential manifesting itself across the spectrum of social structures inside. First Edition printing, we see there along with the empowering informed consent card, fols-out wallet size, resource readings on the rights responsibilities and people involved with cultural production, watershed moments. And while we waited to see what happened next, these two documents were printed off and passed along to be appropriate research related channels for dissemination and given the co authors share among the community. And that's when the bomb went off. A real bomb of course, but just as a closer I'll tell you a slide please. It wasn't very long before their research ethics boards, both SFU and UBC as well as the local health authority, a group comprising about 25 people wanting to meet with us, the co authors of this hot little piece of world class documentation is one man but Scott himself actually did all the typing and most of the wording but a core group of us were present for the final edits to see that what we're collectively saying was true and intentionally minded, since it was our community we were writing about and as you can see from the hoodie I made Scott were on that night of the official launch. We in the Downtown Eastside are not about being read the book we wrote, This information was from us for them for a change. In words writer and activist deep talk, the time has come for our communities to refuse to be complicit in our further categorization is only damaged it's only broken. Like with - with a manifesto began to gain notable popularity, I was blessed to be asked along on an adventure meandering through the lands, spread the word so to speak, as in actually speaking about the words we used in our little statement of solidarity with each other as co-activist against the paradigm and basically the old guy that unaccountable research and it's extract counterpart cultural production on why those words not only mattered, safety and care of the Downtown Eastside, it's hard. It's issues like stigmatization of substance abuse and users, the endless exhaustion and exploitation of vulnerable community members and the overarching gentrification of the entire district. Make way for a clearly opposing social class, our concern, but why they matter now, and the simple answer if there ever is one is that now some of the decision makers are actually listening to us. And so we continue to share the experience and that's how revolutions happen. The uprising of our collective spirit is a community of good people who deserve fairness and respect as much as any other Canadian districts of heavily researched populations. They neighborly slide please. As neighborly peers and esteemed colleagues on the cutting edge of localized grassroots movement, which now appear to have dramatically galvanizing effect on the larger picture of research as it pertains down how he said, we were making ourselves knowing. After many years of having never been even asked so much for our opinion of research projects, ideas, results or future implications, but only being haphazardly poked and prodded and shuffled about like guinea pigs and i might add, I would no clue as to where the any of the data we supply and crunch for these eager PhD students and have avantgarde newscasting or lookie-loos or what would happen with it or because of it. But we did get those very generous $10 gift cards from Tim Hortons or whatever. It's actually pretty much useless because they are hard to sell Downtown Eastside and Downtown Eastside is a serious seller's market, one of the best in the world actually. slide please. And then, even more writing, this is the article we co authored for harm reduction near national, explaining how another community might in theory, be able to replicate our same process of workshopping the issue and open dialogue and preparing a simple stance from which to assert our group consensus and a unified front. To defend our boundaries and honor the work and contribution of research assistants to acting as interpreters as ambassadors of the good nature of the Downtown Eastside often sorely misrepresented across multiple platforms, perpetuated variable classes and race based discrimination and criminalization. Nothing about us without us is one of the simplest ideas I've ever heard. You could not believe how hard it were worked to have to fight an uphill battle in the neighborhood those five sacred words slide
Okay, this one I had met actually has nothing to do with research, per se, but I put it in there to show how close my friend Scott had become for some of us. That time we actually did take a road trip to lecture the UC UBC research ethics board UBC Okanagan. As it turned out, Scott and I had a few things in common besides our newfound passion for Downtown Eastside research activism. slide please.
This is 312 main street in the Downtown Eastside where I'm sitting right now. They're just building once belonged to the Vancouver Police Department. For 50 years it was their headquarters and because they held so much horrific trauma for the indigenous people of this community, instead of tear it down and to bury the shameful memories of what happened to Frank Paul, and all the other people who had died in their holding cells and things of that nature. The group of companies invested in building did the research and decided that the best way forward was to honor the culture does indigenous people create opportunities for the community? slide please. So this is what that same building looks like today. On the inside anyway, welcome to 312 main, a center for social and Economic Innovation. This is where the CREW should be housed. It's a perfect blend of space and specific intention that gets perfect fits perfectly with our mandate and our mission statement glows our creative and collaborative vision has created opportunities for research and community members to come together in a good way and also to create opportunities for people to grow and earn a living. With the tragedy of the Canadian residential school era and the so called 60 Scoop now being taught to children openly in public school systems, the pace of research involving indigenous Canadians is inevitably changing things, altering realities, both indigenous and non Indigenous like so as an outworking indigenous research assistant in the Downtown Eastside as well as with both major universities. I have learned that this is one of our nation's most serious current obligations to return the earthly remains of approximately 10,000 indigenous children buried in mass graves, or the wilds around every residential school site in the nation. Back to the families, nations and communities they were stolen from. And of course, such a mammoth task will require a vast amount of you guessed it, research. Slide, please. The Downtown Eastside as many survivors residential school era and the 60 Scoop living as residents in this community, many of them have lost family to the overdose crisis to COVID-19. And native people still have the highest disproportionate rates of diabetes, substance use and disorders and suicide. And now we're finding even more family buried in unmarked graves across Canada. And this is something in the research interest coming to the Downtown Eastside from anywhere must remember that in this community, but people are grieving quite heavily. So we need to be gentle and always respect for the emotional impacts of our work together. it is not to retraumatize people, which in turn will hopefully read more authentic independent research findings. Another major function of the CREW review process. slide please. This is an excellent infographic for leading framework of cultural safety and humility among indigenous research communities flight through the UBC transformative health and justice research cluster, this group I've worked with for three years now, and in that time, I've seen some of the most amazing things a person could witness. Such care has been shown to me by this small but growing group of genuinely progressive thinkers with the collective vision that they live by and not just talk about. I will be forever grateful to this family. of friends and professional colleagues by bleeds.
And since I'm talking about respect, I think I should also share that this is who I learned respect from elder, Dr. Roberta Price who's given over 30 years of service to the causes of Research at the University of British Columbia, running one of the very first ever Honorary Doctorate of law presented to an indigenous woman in Canada. From her I've learned to respect first, myself, then my family, then my local community and of course, the world community at the heart of the TSCP2 to is the principle of respect. In the Downtown Eastside when all those homeless people start dutifully cleaning and sweeping the sidewalks around their area all exactly the same time 3am every single night for years on end, and what I believe I'm witnessing there is respect. If you show me respect, especially if you don't actually know me, then as a human is my natural state to reciprocate that respect, creating a self perpetuating continuum, built the strongest most versatile idea known to humanity, the earning of respect. Thanks for listening. And now is my honor slide please - to show my good friends respect. The Downtown Eastside community research ethics workshop website is now live. Featuring on the front page: CREW the movie! enjoy folks and happy researching.
thanks so much, Nick. I love that "CREW the movie"! and do feel free to check out that website. We just sort of launched it pretty recently. I think this is the first public talk that we've shared that with so you can check that out and a lot of the resources that Nick mentioned, the manifesto, the card etc. They're all available to download off of that website as PDFs. I'm going to share something here as well.
I'm going to talk a little bit and Nick has already shared a lot of this. So I'm going to skim through some of these things. I didn't exactly know everything he was going to say. So thanks Nick for doing such a great job of just outlining some of the backstory here. The one thing I'll spend a little bit more time on is just explaining a little bit of what we've been... how we've approached this sort of community research ethics workshop, community research ethics idea and what that can look like and what some of the benefits of that have been. But really quickly, I'll just go through some of the sort of the background and overview that we often do and we talked about why why did we do this work? I hope this is seen as a sort of a complement to some of what Nick was sharing from its perspective. And I think Nick has contributed to all this stuff equally, if not more than I have. So anyways, so of course research can be helpful. I think that's something it's worth stating is that there there's some value that often communities even communities that have really bad experiences with research or researchers recognize there's nevertheless some time some value in the DTES. A few examples that people generated when we talked about this in research on one where that can create some albeit temporary and low paying forms of payment, but nevertheless, that's a meaningful part of sort of the economy of the Downtown Eastside is research and research related work. It can be an educational and empowering process, especially when community members have directly contributed to designing and leading and initiating research you know, they can answer questions that they actually care about. It can also promote positive social change in the community. And there's lots of great examples of this in the DTES, two from the world of harm reduction in drug policy include insight and the Crosstown clinic North America - both North American firsts - supervised consumption site and the heroin assisted treatment clinic. Both of those made possible through research projects, in addition to years and years of grassroots advocacy and activism by community members, but also sort of maintained and sustained through research so people recognize sometimes research. It's not all bad. But of course, it can also really hurt it can be really harmful, and there's lots of different ways you can describe those harms. One is we sort of talked about the triple Xs of exploitation, taking things that research perhaps shouldn't; extraction taking perhaps too much; and exhaustion. It's when we think about less, that research, especially in a heavily researched community can really tie up community resources. People shared how, you know, often our best people the sort of the people have the most energy and vision to do awesome community based activism and grassroots work. Sometimes they get sucked into these research projects. They end up serving someone else's interests - kind of taken away from the interests of the community. Other ones that people share it I think that were common, some of the me less recognized hurt hurts or harms of research, what is false hope? And this actually is a quote that came from a really recently published paper by Vicki Bungay and colleagues from UBC. He talked about how you know people this is a quote from a researcher describing - they know that this happens, people are desperate for the situations to change. This is where researchers are really culpable. We either tell or imply to folks that they're going to contribute to some kind of change by participating in research, when we know damn well that that's extremely unlikely and I think that's important to acknowledge that oftentimes in that process of sort of convincing community organizations or participants to to join up with the research project. We as researchers, we can often be guilty of overselling of saying, You know what we're going to do this research or we're going to create these tangible, positive changes in your life. And I think that's, that's irresponsible and that contributes to some of the disappointment that people have around research. Research can also be a way of delaying action. Oftentimes, people say the last thing we need is more research. Okay? It sucks to be poor grades. We need more studies on that. No, we know that let's just like change the policies already. Research is a great tactic that political folks like to use to delay action.
Research can be irrelevant, especially research thats very kind of abstract. And theoretical and these kind of academic exercises, especially when you're asking community groups, groups that get researched a lot to contribute or participate to that kind of research. Irrelevance can be sort of a major problem there. People say what, who cares about this? It doesn't know material and have an impact on my life, re traumatizing. Nick mentioned this already. Of course, we just can dig up things that people were trying to forgot as a way of protecting themselves and then perpetuating stigma. This is something they mentioned as well. Just one example we like to share it's actually comes from an SFU study. And I share this just as an as an illustration of like what this can actually look like. So this is a study from folks in Health Sciences at SFU. Don't tell them we use them as an example. I don't think they know this. But their study basically just linked administrative records. They didn't talk to a single actual living individual. They were just pulling records from you know, social services and the justice system and the house system and trying to draw the lines between you know, who are these people and to the the built some store around it that said, you know, a small number of people are using a lot of services. Of course local media picks us up and says assets you study suggest 300 offenders on the Downtown Eastside cost $26.5 million in services, which is bad enough. But then of course kind of reactionary columnist and the Vancouver Sun picked this up in the US this research to support their political agenda of gentrification of displacement in the Downtown Eastside. Just another argument to say, you know, basically, fuck this community. We got to get these folks out of here. So that that's sort of the way that research can operate often to stigmatize the community. Nick mentioned I think Nick actually shared this quote from Eve Tuck who we love, whose work has been really influential for us. That this is a something that communities often actively come to a consciousness around and resist they say, We don't want to participate or contribute to further characterizations of our communities up ourselves as only damaged or only broken. And this is really the story of a lot of resistance to outsider researchers in communities that you know, often that's the only reason researchers are there is to excavate damage to just sort of extract stories of pain and the you know, the cost, the impact of oppression, as if that is the only story worth telling about people's lives. All right, all that to say there's a lot of research that goes on in the Downtown Eastside. A lot of these problems are really, really well known in the Downtown Eastside research is unlikely to stop. Are there ways that we can, as people have thought about in other contexts reduce some of the harms of research? So that was really the impetus for research 101 - we're trying to clarify community expectations for respectful, useful and ethical research. We're trying to reduce some of the harms associated with your research. Also, and I think I attribute this statement to Nick and one of our very early meetings that we had, which was it would be great to have support from amongst organizations in feeling empowered to say no, or to demand more from researchers sometimes people feel they have to oblige researchers. Oh, I feel bad for you. You're just this student or some professor doesn't know what they're doing. Sure, will will participate will join you will collaborate. But if there was sort of a more of a consciousness amongst are between organizations to say, You know what, we all face the same problem. Let's just expect more. We have some power. When we get together. That was really the purpose of research one on one was bringing people together.
A quick note on how we made this possible. This is I'm Joe Hall from SFU Woodward's the Vancity office of community engagement, who was a really essential initial champion, and helped funnel money from different sources at SFU into making research 101 happen. This is Sarah Common from Hive for Humanity who was really the key community partner in that they've worked really closely in the Downtown Eastside in a really good way. For a long time. They had those established relationships. They were super helpful for me and learning how do we set this up in a way that's actually truly inclusive and accessible? And then of course, SFPIRG, and I don't always get the chance. To say much about what what the impact of SFPIRG and Kalamity specifically was, but I really want to say thank you if you don't know Kalamity, if you don't know is it for I highly suggest you check them out. just such a wonderful organization doing such important and sort of under sung work at SFU. And PIRGs in general I think are such a great part of universities I always really appreciated the ones that I was able to be somewhat connected to. This is also something I really appreciate SFPIRG for is that they after we kind of done the manifesto, we released an initial, they were super, super kind in offering kind of a formal endorsement of it and they put it up on their website and like a whole separate page. They even quoted me and saying how much I appreciated them which was great. We really love that putting that endorsement sort of into practice and not just saying, this thing's cool, but actually we want to promote this thing we want to sort of take it up, take up its values. One quick story is that one of the main ways that Kalamity supported me as a facilitator trying to think about how do we facilitate these workshops, research one on one in a good way that truly inclusive, truly accessible, so people feel really comfortable. This isn't like a research project. It's not a class. It's like a space where everyone can really contribute and bring their expertise and their experience and clarity had so many great ideas about how do you create that space and that was, I think, really instrumental in how well I felt like research one on one went as a workshop series. One kind of funny tactic, that Kalamity encouraged us to do is to model kind of kind of sneakily, to model an approach to sort of calling out someone if something sketchy gets said, and so I was working with the research assistant from SFU and undergrad. And Kalamity said -Why don't you to sort of model this in a way that you don't actually tell people is, is sort of prepared in advance. And so we agreed that I would say something a bit demeaning about undergraduates to the group and then my research assistant, Lindsay, would use that opportunity as an undergraduate herself to sort of respond and say, Hey, like, that's not cool, kind of to illustrate what we just talked about, about you know, how do you create a space where people don't have to just sit there and feel bad if something you know sketchy or oppressive is said and it was it worked so well but immediately after that another person in the workshop stood up and sort of called out a few other things around you know, how how much I was talking and how it would have been so great to have like an indigenous women like opening up the the first workshop and that was a good learning experience to somewhat unanticipated, but I think it really demonstrated how well Kalamity's strategy had worked anyways. So here is a bunch of collaborators that we connected with across the Downtown Eastside. These are just organizations that were in some form around the table. So some of you may recognize some of these, maybe not, but these are organizations that work with are led by sex workers in the Downtown Eastside. People use drugs, indigenous people use drugs, people on methadone. And, you know, just generally this is the Carnegie Center that one of their groups CCAP had somebody come a couple of times, Hives for Humanity. So these are part of this strategy here was that these are organizations that are often kind of interact with researchers. They're sort of doorways into the Downtown Eastside, and so we knew that these folks had a lot of experience working with researchers some good some bad, and we knew that they had those expertise and that lived experience around what's gone well when what's gone badly with research and then on to the side and most importantly, you know, what are your hopes and expectations for better treatment?
As I won't go too much more into this. This is roughly in our view, what we did each week - and Nic mentioned this already - we talked about wider context of research, but if people want to know about researchers some of the differences between research ethics boards and community ethics, I'll talk more about the concept of power and peer research and talked about reciprocity and community feedback. And then, as Nick mentioned in the final week, actually met up with Simona and Nick, I remember this is one of the first times I met them outside of this context. And we went over a very, very rough draft and then brought a slightly more polished rough draft to this group for the final week, and really sat and went line by line and workshop sort of every every sentence and said, Is this like a fair representation of everything we discussed in the last couple of weeks? And then we decided everyone who had participated in the workshop would be a co author and we would just list those names alphabetically. And then we put it up on Google Doc, which is where it still lives in its sort of most updated form. You can see that and the shortened link at the top, this is the prettier PDF and kind of hardcopy version you can find. still kicking around some places and then out on the side, though, I think it'd be to print some more at some point. And then this is the cool card that Nick mentioned. And as I said, all those are available on our very new cool website. Very briefly, just to give you a taste and encourage you to go check out and read the manifesto for yourself if you haven't, here is a brief outline of sort of what's actually in there. The first part talks a bit about kind of the starting stages of a research project and people from the research on our workshops, saying we really want to know these kinds of things about researchers before we agreed to work with them. People had so many great critical questions like, Why do you have you know, the questions that you have who doesn't know this? What are some of the assumptions you're bringing into your research project? What is your lived experience with the topics you're researching? How has that lived experience impacted you? One thing I'll also highlight is it kind of backing up what I said before, people from research 101, the folks really expected researchers to be action oriented that they weren't really interested in being part of research just for the sake of research, just more data, they were really like what are the tangible things you are going to commit to to work on with us as a part of or as a follow up to your research in this community? This is sort of something that's really we've expanded on in the years since but this question of ethics research ethics, and I know that's the wider topic of this series that SFPIRG and GSS are hosting, which is great, which is amazing. And we've we've built some of our own thinking around this on some of the excellent work of Eve tack and when he shard folks in New York at the Bronx Community Research Review Board which is a marginalized low income community that also tons and tons of health research, but they've developed their own community research ethics board. And to that process, we've tried to kind of emulate it a little bit. And we've tried to think about what are some of these key differences between how you know folks that are living in the Downtown Eastside who get researched a lot? How do they think about ethics and respect and care in their community? How does that differ from some way guy like me up sitting on an REB at SFU? Who's sort of, you know, thinking, Oh, gee, I wonder what like risk and vulnerability are for you know, someone in the Downtown Eastside? So this is sort of something that the manifesto touches on. But we've continued to think through this, and I'll talk about that more. We'll talk about the CREW, which Nick already mentioned too.
this part, we talk sort of about the, I guess the logistics of doing community based research. Peer research is was something that people often talked about at the time that language is changing a bit now, but many people research one on one had experiences working closely with researchers and paid peer researchers to assistant positions and people so that's great. But it comes with new challenges, like feeling tokenized that they're just being given grunt work, they're just being used for sort of access to their hard to reach networks of friends or people you know, people use drugs or sex workers, that people recognize that there's sort of like this entry point for researchers. People just feeling like you know, the stigma of researchers is absolutely coming through in community based research projects, a lot of the time. They just feel that elitism that not being fully recognized for their expertise or experience. And recognizing that oftentimes in those those research partnerships, there's very little acknowledgement of those power dynamics between community members and university researchers, folks, I love this quote, research has been costly for community very rarely is it actually benefited us don't assume your research is helpful when it needed or going to be beneficial for our community. We don't owe you anything. I just appreciate the fierceness in that to be able to speak back to researchers and say, stop acting like you are going to save us like through your research study. We don't need it. And stuff about money. I mean, this is pretty standard by now. I hope almost everybody knows this, but people are pretty done with getting gift cards and appreciate getting cash. There's so much stigma and just patronization wrapped up in this idea that we've got to give marginalized people cap you know, gift cards instead of cash so they don't spend it on things that we think are bad for them. It's just ridiculous. So this and I think there was one of the questions in in sort of the that was submitted in advance talked a bit about this, but this is the final section of the manifesto. And it tries to capture sort of these later stages of a research project about feedback about reciprocity. How can people do not be the sort of helicopter researchers that just drop into a community get their data, get out and never heard from again, and people definitely have stories of this happening all the time. You know, we participate in that research. I wonder what happened to that. It was really you know, people even said it felt devastating when researchers didn't come back and at times people shared that one time you know, they did come back the researchers did come back but they kind of expected us to do everything to to organize a space and find a time and invite people and the researchers just sort of waltzing in with their little flash drive and a PowerPoint presentations that okay, like where do we present our little findings? Or, or maybe they emailed like a PDF of the final published paper to the executive director of an organization and said, Well, that was our knowledge translation. Great job. No, that's not what people expect. That's not accessible. That's just yeah, that's just not what you should be doing. People should be planning in advance for how to do this in a truly accessible, truly inclusive way. And also, I think, Nick is somebody also associated with having shared some of this great knowledge and insight in research 101 is just saying that knowledge translation, just sharing what you found, that's not reciprocity, that is not an equalizing of the benefits between what researchers get out of this and what community organizations or folks in the community get out of a research project. Just coming and saying, Hey, we learned that people really have a you know, poor health if they have no money, like, who cares? Like, you know, sure, I'm glad you found that and you told us, but
if you're thinking seriously about reciprocity, like that, that's not even scratching the surface. So, so a bunch of ideas that people had were, first of all, to when you're writing up findings, when you're deciding what are we going to work on first, prioritize the thing that's most useful and interesting to the community first, before you go off and do your fancies theoretical publication, co write a community report with people from the community that you've collaborated with, present together at conferences, write actual plain language summaries of your work that you can share with with folks that participated, so you know, they get to the main things that are most interesting, maybe those aren't publishable findings in your field, but I bet they're interesting to the people that participated. prioritize those things. People also said do something else for the community. Think of yourself other than just being a researcher, like, show up, volunteer organizing an event, give money if you can, like like, find other ways of adding value back into the spaces where you took something out of when you're doing research. Just to wrap up a couple last things here. We've continued this work since we did the manifesto in 2018. Now, so quite a while ago, we've continued to do work, sort of like knowledge translation in the community trying to share as much as we can about what is the manifesto, both for community organizations who can use it to empower themselves to kind of fight back against researchers, but also to institutions to researcher organizations to say hey, guess what, you can't do the same things that you've always done in the Downtown Eastside. Here's what people are saying about how they wish you treated them. So we've done a lot of that kind of work over the last couple of years. Nick mentioned we've had these meetings with local research ethics boards are sort of stalled by COVID. But I think those are really promising and I hope we can continue to build those partnerships. The community research ethics workshop is probably the main thing that we've continued to work on. And this is sort of our steps towards something like a community research ethics board. We call it a workshop just because it's a little bit less clear what final form this will take. We just finished writing a book chapter describing some of our experiences, piloting a process of community ethics review, and we can share that draft. It's just sort of in a draft format. We can share that after this talk and people are interested in learning more about what that looked like and what we were able to find. Just quickly a few of the sort of potential benefits from this process where basically it's me and Nick and Simona and Jewel and Jim sitting around that table at Ovaltine cafe and reading through you know, some researchers ethics application for a project to suppose tap into the Downtown Eastside and saying what do you think about this? What's your lens, your lens is like the lived experience of living in this community of knowing what the norms of respect are here, what's you know, what do you see is problematic with this. So a bunch of things that I think are just you know, such really show the differences between an institutional RTB that isn't going to notice this stuff. And folks in the community who were like, yeah, don't say that about me and my friends and my community. Don't assume that about us. So identifying inaccessible language and formats. critiquing this was this was so you know, such a big realization for me is that often research ethics applications require you as some distance, researcher person to sort of imagine what you think the risk level of your research is going to be and what you think the vulnerability of your participants is going to be. And literally if you go through UBC, you they make you fill up this kind of three by three matrix where you're rating both of those things from one to three, and if it's in the higher quadrants, then you go up for a full board ethics review, as people thought that was wild that that people from outside of the community thought they could do that about the Downtown Eastside. That's just like a really important recognition about just how bizarre some of these normalized things within institutional research practices are. Noticing unintentional stigmatization and research design this was huge. Nick called me out in my own doctoral research ethics application and said something that I'd written was, was pretty stigmatizing to men in the Downtown Eastside, which was totally true. And I hadn't noticed it because I'm a privileged white guy who does not live in the Downtown Eastside and like, just the thing we're critiquing, doing that weird thing of imagining other people's risks and vulnerability from afar, outside of relations.
People have great ideas for how can we maintain like rigorous strong, ongoing informed consent, which researchers and ethics boards are much less likely to notice, to think of, to advocate because it's really hard. But people in the community were like, No, this is how you could do it, and you should do it. Clarifying the meaning of lived experience and research. This was huge. I think, at this point, people, you know, researchers, ethics boards are sort of realizing you know what, it's good to include lived experience. It's good to have, you know, a person with experience as a part of your research team. Well, that's great. You're really cool. Check that box. Community ethics review people like okay, what lived experience like tell us more about that, like that looks just like tokenism. Like, what is this person's actual experience? And how is that prepared them to, you know, provide whatever ethical compass you're imagining they can provide in the context of your research project. So people will just sort of Yeah, can see through the vagueness and then this final one, people through these community research ethics review processes, they recognize recognized that sometimes researchers kind of hint in their applications, you know, maybe down the road, we'll do these sort of secondary analyses of our data and, and people are like, well, who's gonna look at that, who's who's reviewing that or you just you just get sort of free run. Once you do your initial pass, you get to like, take the data in a different direction down the road. No, thanks. We don't trust you. So we recognize that something like a standing community research ethics review board could be a way of maintaining community connections and community oversight over research happening in the community, especially when it's a little bit less clear what the connections are even studies like that stigmatizing one that I shared that are based in administrative data. Those folks you know, they were just they did an ethics application, but they don't have to talk to a single person and then on to the side to say pretty damaging things about the neighborhood. This is our website. Nick mentioned this video. I think it's called technically the official title - don't quote me on this - is "Don't Read Us the Book That We Wrote," which as Nick mentioned, is the thing on my sweatshirt that Nick kindly made for me. And it was it's pretty rad. I'm really glad we got to participate in this. I highly recommend checking out if you want to hear from more of the folks who've been involved in this project. It's just right on the website on the first page, you just press that and take it away. This is a side thing but just as a another thing we've been involved with is making research ethics training more accessible for people in the community. So we, in collaboration with some other folks from UBC designed these, another workshop series where people could get their TCPs two core tutorial certificate as Nick did by participating in these workshops rather than doing that super long, boring flash based training on like the government website. That's one thing Nick mentioned, the harm reduction paper where we talked about, you know what you could do this process somewhere else. I know some of the folks joining today are not from Vancouver, not necessarily doing work in the Downtown Eastside. If it's relevant, if you're part of a community that's been researched a lot and you think this could be a useful intervention in the culture of research that's extractive totally follow our steps or make up your own stacks do something similar. It's a form of community organizing to learn more about what is the history of research in this place? What are people's expectations? How can research be made more useful, less extractive, less exploitative? You could do this anywhere. And so we lay that out. People actually did do research 102 in Edmonton, they just released this like a year or two ago, which is pretty rad. We recently heard from this guy at a panel we were on, which was really awesome. Also in in Toronto,the Jane Finch Community Research Partnership, they've done a similar process kind of independent of us. They're working on setting up their own kind of community research ethics board. Really, really cool examples of communities sort of fighting back and saying you can't this isn't a one way relationship. We too have our own conceptions of ethics, of what's appropriate, what's respectful in our context, and we can express those we can demand those are researchers. So that's really what this work is all about. So if we're talking a bit longer and I hope we still do you have some time for discussion. So thank you so much. And you can email me and Nick if you want to follow up over email.
Thank you folks, so much. So I had the pleasure of hosting Nick and Scott for a similar session to this back in October. And it's really cool to see how much all of your like thinking and work has grown, even in that time. So yeah, thanks so much for saying yes to coming and joining us today.