Stephanie Harvard (SH): Can you tell us a bit about yourself, and how you came to be a patient partner on the Peer Models Network project?
Alison Mclean (AM): I work for the Birth Place Lab. I’m one of the Community Engagement Coordinators there. We [AM and SH] met at the BC SUPPORT Unit Conference in 2018 and we connected there. I think I looked at one of your posters and we got talking about it? I think that’s how we met and that’s a little bit about me. I’m a new mom, new-ish, since he’s now almost one and a half, but still quite new.
SH: You’ve been involved in two projects now. If somebody said to you, 'what kind of project are you involved in?', and 'why were you interested in doing that', what would you say?
AM: I was interested in being part of the first project because, as someone who does research, I was interested in the patient voice myself. But also, I have asthma and I’ve had it my whole life, so I’ve interacted with the health care system a lot. Now, having had a baby- and I had lots of complications- again, I interacted with the health care system a lot. Working at the Birth Place Lab, I knew a lot about maternity care, and I was comparing what I was being told by my doctors and midwives about my options for care with my own knowledge. Kind of like 'oh, okay, wow, so even though the threshold for this is this, I’m still being offered this, I’m not being offered that'. I think I noticed things a little bit more than I would have if I wasn’t on the first project. I think that having been on a project as a patient partner; when I interacted with the healthcare system I really thought a lot about what was happening to me, how it made me feel, what was missing, what was good, what was bad, what I would change, etc.
With this project now, it’s essentially trying to get at what health care modellers take into consideration in their decision-making when modelling. Since they have to make decisions about what to include, what not to include, since things aren’t so cut and dried, you know, white and black. There’s a lot of grey. They have to make decisions, even if they’re trying to be as objective and not involved in the decisions as they can. There’s always decisions that they have to make.
SH: Has your view of health care decision-making changed since becoming a patient partner?
AM: I don’t know if I would say it changed, but I would definitely say it’s now more informed. One thing that it’s brought up for me, is– you know how in healthcare modelling, you use information that’s already available, right? Given that in research, in general, most studies are done on white people, usually higher socioeconomic status, for the most part, I always wonder how well it captures what actually happens for people who are not that. For example, with Black women and maternity care. In Canada, we Black women are more likely to have complications due to pregnancy and child birth. Whether it’s death, whether it’s preeclampsia, whether it’s a pre-term birth, like a lot of things, right? And not captured in modelling is how racism and all these institutionalised things from way back in the day still play into our health outcomes. People don’t think Black women feel pain as much. I think I told you before that when I was about to have my C-section I told the anesthesiologist that during my pregnancy I had a consult because I metabolise drugs quickly- so you guys need to know, you know? But when they started the C-section I could feel it. And I told him, 'I can feel it', but he didn’t believe me. I had to tell him several times. I even ended up having to describe to him what’s happening, like 'okay, this is what they’re doing now'. Because normally you shouldn’t be able to say 'this person is reaching into this thing and doing this'. You’re just supposed to feel general, like tugging, pulling. After I told him, like okay dude, this is what’s going on. Then he believed me. That perpetuated that whole stereotype that because I’m Black I don’t feel anything. My midwife ended up also saying, 'if she says she can feel, you need to believe the person'. It makes me wonder how that lack of representation in research affects healthcare modelling.
SH: In terms of collecting the type of data that goes into models, how would you describe the direction you hope things would go?
AM: Just inclusion, honestly. I just hope it becomes more inclusive of different people, in all aspects, race, ethnicity, income, people who are housing instable, people who have previous drug use, people who are formerly incarcerated. And this is not just for healthcare modelling. I think this is research in general. I think it’s easier for researchers, because of funding a lot of times, to just get, you know, white, middle-income people. Other groups, I think, need a lot more work...I think you have to get creative in how you make your research appealing and accessible to different people.
SH: In terms of the big picture for health care, what sort of health care decisions are most important to you?
AM: The thing that’s most important to me is informed care and patient-led decision-making. I think if patients were more involved in the decision-making, or that extra five minutes was taken to explain something, so that at the end we come to that same decision that the doctor was leading us to, I think that would be really awesome.
SH: What about the kinds of decisions that take place for the whole population, or the whole province?
AM: At that level, I would want transparency around that decision-making. As a Black woman, I would love to think decisions are made with the whole population in mind, but I know they aren't. For example, women's issues are less funded, right? So, I feel like they might decide 'well, we’ll up the funding for vasectomies for men, but we’ll cut the funding for mammograms for women. They will now have one every two years and that should be okay, based on this healthcare modelling'. I feel like that leaves less room for stuff like that if the whole process is transparent. Again, I cannot believe, or lie to myself, that people are going to be fair and just and totally representative of everybody. My lived experience is that that is just never the case.
SH: In the context where models are being used to inform budget decisions, population-level or community-level programs, what would help?
AM: I think maybe making models a little bit bigger and more inclusive of the bigger picture. For example, instead of one model that just describes one thing, like 'if we provide this drug to everybody, then it’ll result in this many people not getting sick, which will save the health care system this much money', let’s widen the net and say 'ok, but what issues would we have from the drug...in terms of harmful effects on people'. I think you miss some of the picture if it’s not all presented together. Like, even if it’s on the next page, people, I think, will look at it as a separate idea.
SH: What would you think about a process where modellers were open to questions from the public during model development?
AM: Oh yes, definitely, especially if it’s a representative public. I feel like I’m not – like yes, I am a representative of Black people, somewhat, but I feel like I am also super privileged, in a lot of ways. So I think it’s important to have those people who have less of a voice than me. For me, like I might bring up, you know, what about childcare? But they might bring up, what about my rent, you know? Just as an example. So I think yes, this would be very important, as long as there are Indigenous people involved in the process as well, lots of different marginalised groups included in the process.
SH: In this project that we have going on, the Peer Models Network, there’s a forum so people could ask a question to the modellers. Is that something that you can see yourself using?
AM: As in, on models that they’re working on currently, or is it going to be 'okay, we already finished this one and it’s done, no more suggestions, but you can comment'?
SH: What would be the most valuable from your perspective, during the model development or after the model development?
AM: I think both. I think it’s important during, just so that people can bring up stuff that maybe was not considered. In my own experience with research, when you publish there’s always someone who’s going to say something that you’re, like, oh my gosh, how did nobody think of this, right? So I think it’s important for it to be during and after because there’s always the potential that something big could have been missed. If you can still comment after, or ask questions after, I think that’s a good thing.
SH: Some of this relates to topics about science and society, and the trust relationship between scientists and the public. What are your thoughts on building trust in a relationship like that?
AM: I think one thing that would be good, that is very difficult to have –– let’s say on the website you go to our team, right? If I see people who look like me, or I see it’s not only white men, or not only like, ten white men and one Indian woman, where I’ll be like, "I don’t know how much they listen to her". You know what I mean? Let’s say it’s a women’s issue that these people are studying- for me I feel like what is crucial in building trust is having diversity on the team, whatever that looks like. I think also another thing that builds trust is transparency. If you can ask a question, like how we just discussed, and these questions are answered and then addressed, in some way. Let’s say this is an ongoing project. If I’m super involved and keeping track, and I see that what people ask or what people suggest is implemented in or addressed in some way, just a list of "ok, these are the things that have come up and this is how we addressed them". So that it shows that you didn’t just tokenise me, like you made me think I can make suggestions, but you never actually used any of them.
SH: In terms of creating a more just society, what are your priorities and how can scientists help attain those goals?
AM: Honestly, that’s a tough question because there’s two ways I can answer that. The immediate priority is, honestly, safety. Even in Canada. I will only speak to my experience as a Black woman/person and to things I have heard from my Black family and friends ok? A lot of this applies to Indigenous, First Nations people as well, but I’ll just speak to the Black experience because that's my life. Safety for us is so real, and I don’t mean safety in the general sense of the word. I mean safety as in literally going to the store, even in Canada. Especially here in Toronto. Just a few weeks ago this Black guy, he has mental health issues- police had been called to his house several times because of his mental health issues, so I guess there were some altercations and [someone] called the police. They came and they shot him. This happens a lot throughout Canada. I’ve had police stop me for no reason and threaten me. So, just in the basic sense I don’t feel safe. And I have a Black husband who is six foot five so I worry about his safety too. This is a health care issue because it creates all this stress on Black communities, worrying about safety with everyday things. Now it’s even worse, when you wear a mask outside. Black people are being stopped and told to take off their masks and that "oh, it’s a safety thing", but it’s like, if the whole country is being told to wear masks, how come we can’t? Decisions that other people might take lightly, for us can get you killed. Whenever you interact with the police you never know what’s going to happen. If you will survive that interaction and get to go home. Then with the health care system, a lot of Black people get abused by the system, treated badly. At workplaces too, there’s so much racism. I’ve experienced it myself for years and nothing ever happens. You report it and you’re always told, like "oh yeah, she’s just a difficult person to work with" or you experience racial gaslighting "I don't think what she said was racist, I think…". You really start to question yourself and wonder if you are living in the same world as other people, perceiving the same things as other non-racialized people. Don’t we all have to sign the discrimination and no racism in the workplace thing? But then when I report it, I am met with excuses. I don't even get a, "we’re going to speak to them" or "we’re going to give them training on discrimination". Nothing. I am made to feel insignificant, a diversity hire that is inconsequential - tokenism; less than, not worthy of compassion, less than human. So that lack of safety is a big thing.
I think the other thing would be having good representation. Good representation will help a lot of the decision aids that I use, it will make them more useful and applicable to people like me. And I know this is super complex in Canada, because it’s not just a race thing, it's an ethnicity thing. Like, there’s Caribbean people. There’s people who moved from the States. There’s African people and all the African people are from different countries, all the Caribbean people are from different countries. You know, it’s a huge difference. In Ghana, for example, a lot of people there have sickle cell, right? So I find sometimes when I go to the hospital they ask me, like about sickle cell, when they hear I’m from Africa. But it’s, like well, that’s not a Southern Africa thing, you know? I mean, it’s good that they are recognising some of this, but at the same time I feel like you get almost treated the same regardless of where you come from in Africa. Like if they find it turns out Caribbean people, like from Jamaica, have this random thing they’re going to ask every Black person, when it’s, like ok, but I’m not even from the Caribbean, you know? So more representation would be beneficial.
And I think it’s not only about diversity, it’s also about not tokenising people. I’ve been on a lot of research teams where they’re like, 'oh, you know, diversity is great', at different events, they talk about how diverse we are - they put their Black and other racialized people on display on their websites or marketing materials. Just because I’m there, one person, right? But any time I give a suggestion, the white people shut me down. Like 'no, that doesn’t make sense', or, like, 'no, but we don’t care about that' or 'yeah, but we don’t have enough money'. So, what’s the point of me being there if I have no voice - even when it comes to Black issues? This tokenism causes immense racial harm. And then every single time we have an event they make sure I am there and on full display, 'oh Alison, you have to sit on the stage with us too' 'this is Alison, our (insert job title here), a refugee from Zimbabwe". So I wanted to be very clear that yes, inclusion, diversity, all that, but not the tokenising kind. Listen to the people you have hired or don't hire them at all. I’ve known many studies that, at the end, didn’t work out and it’s because of silly things like this. One study I was in they were doing research in communities that are very traditional, and it was maternity care stuff. You can’t have a man come and talk to a woman during the day when the husband’s not there. And that’s what they were using. They were using men to go. Then they were saying 'wow, our uptake is so low!'. I was, like, 'I told you guys you can’t send men'.
SH: Do you have any other ideas for how to strengthen the process of taking feedback from the public, getting it into the ears of scientists and people who are building models for decisions?
AM: I don’t know what process, but I definitely think it’s important that not only the patient partners but the people with the lived experience are seen as experts, same level as the researcher. You know how everything has a hierarchy, right? It shouldn’t be that the PI, for example, makes the final decision. I think, as much as possible, suggestions from experts that have that lived experience should be taken more seriously. Because what they the PI or the funder want studied might not be what the community wants. It might not make sense, or might not be important to the community. I get it that in most research teams, you write about your study and then you get the funding and then you go to the community and get steering council people, or whatever, but I think that process still has to be open, that you can add or make even drastic changes if you need to, without losing your funding.
SH: Are there any other viewpoints that you want to make part of the conversation, in terms of scientific modelling and how to improve that, looking forward?
AM: I think having a Facebook group and joining other Facebook groups and posing some of these questions there would be a good way to engage people. As things grow and the network grows you can definitely have people there who will engage. But I think it’s about being strategic, even if you have someone do a few hours a week of social media stuff or community engagement. When I first got this role of Community Engagement Coordinator I thought, like, does it make sense? But I’ve realised that I took for granted what I did, because a lot of research studies have difficulty going into communities and getting communities to engage. As someone of colour, when I go to communities, I think people just, right away, trust you a bit more than if it’s a white person. I would suggest that, once you start getting to the phase where you want people to engage, start going out and talking about this with people in a way that they understand. And I would 100% suggest you get someone who is respectful and mindful of the histories as well. I think it’s hard for people, sometimes, to look outside themselves and their beliefs and their world. To see that, you know, kids are still being taken away from First Nations and Indigenous peoples today in 2020. I think as long as we are all willing to learn and unlearn as new information becomes available we can start to get on the right track.