Emma

Emma

Emma is a coordinator for a breast cancer research group at a local hospital and has a background in social work. During graduate school, Emma became involved in a community-based research project which aimed to increase rates of cervical cancer screening in Somalian women. Participants were invited to be a part of the research team and had a role in many aspects of the project, such as helping to find more or new patients to participate, project planning, and helping to lead focus groups. Emma credits the participants’ feedback throughout the project, including sharing their lived experiences with cervical cancer, as contributors that led to the success of the project. Emma was then hired as a research coordinator on a project about experiences with breast cancer survivorship within immigrant communities. Using her prior experience with co-design, Emma’s role is to connect with breast cancer survivors within this population and get them involved in the project as a contributing partner. She firmly believes that research partnerships will become more common and hopes that guidelines and resources will be made more freely available. Emma recommends that researchers should plan early on in the research process for how they will involve patients/caregivers, and that patients/caregivers should ask research teams similar questions to what one might ask about a volunteer or employment position (e.g., What will be my role? How many hours/week are required?).

 

Researcher

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I mean a big barrier for us specifically because we work with immigrant population is language barrier. Unfortunately we don’t have anyone on our team who speaks the languages of some of the communities that we want to work with. And often that comes down to, you know, you end up maybe wanting to pay for interpreters or something like that. But again it's just its more money, it's more funding it's a little bit of an additional challenge, which is why if you can do a model where you have somebody on the research team who's from that community and speaks whatever language, that can be really helpful.

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And again like I mentioned before even sometimes it's challenging even to do this work because we're not even physically set up to have - like we don’t have spaces that feel - like we don’t have easily accessible childcare. So if you're asking women to be involved and come to the table for meetings and they have kids but this isn’t their paid work then it's kind of you have to navigate around it.


 

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So, I think again I kind of mentioned this but thinking about partnering or just connecting with different - like putting the time upfront to connect with community agencies I found is really, really important. Because like I had an experience where I when I did that and I was trying to recruit, you know, eight women for a focus group and by going through that channel I was able to like within, literally within a week I had eight women who were all coming to the centre and they were ready to participate in the focus group and they knew each other so there was a little bit of a comfort there, it was also a little bit of a social event. And that was just one of those moments of why have I not been doing this more? 

I think maybe another thing is I guess once you kind of have somebody that you can connect with if you have the opportunity to for example let's say I was doing interviews and I have my - trying to recruit folks through a recruitment poster, just having somebody who works kind of in the community that I was trying to recruit from review the poster and just give me some quick tips. And some things like really simple, suggestions of images to change or text size, certain things to emphasize things that maybe we thought that weren’t important that they didn’t think were that important, that kind of thing can be really helpful. But again a barrier to that is that people don’t often build funding into being able to give anything back to those folks who are essentially really helping us to get the work done.

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So I got involved first in community-based research when I was doing my masters in social work. And it kind of started with me just knowing I didn’t want to do direct counselling work so I took a student placement at a community health centre where they did community based research. And that really interested me because it kind of tied together social work, which I was obviously interested in, but also research, which I was interested in.

So, I started working on a project that was working to engage the Somali community in Toronto to increase the - increase rates of cervical cancer screening. And it was a project that specifically involved women from the community in focus groups but in addition we had members of the community on our research team. So we had a few ladies who helped out with all the different portions of the project, planning, they co-facilitated those focus groups. And it was just a really awesome experience, a really positive experience because they obviously had so much lived experience and so much to offer to the project. And we realistically wouldn’t - it was a tight timeline and we wouldn’t have been able to get the project even close to done without them.

So it was a really great opportunity for me to kind of get involved in research in a way where I still felt connected to communities because that has always been something that's important for me. And so from there I think that kind of helped me decide that I did want to work in research but that was always important for me to work in a way that I was kind of connected in some way to different communities with patients or whoever.

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I'm trying to remember, that was a long time ago. So we had three women from the community who were involved in the project. And at one of those - I mentioned that we had some trainings that we were all at, I guess probably the final of the trainings we kind of did a I guess an orientation to the project. And at that time it was kind of laid out like here all the different - here's the different phases and the tasks that are going to be attached. And I think we kind of talked to everyone in terms of like what's your time commitment first of all, what is something that interests you? I think we did an exercise in terms of like something that - things that we knew we had experience in and things we wanted to learn and then based on that we kind of worked out the different roles that would happen. 

So those three community members were all - like they were all hired at an hourly rate by the organization. But then on a specific project they kind of took roles depending on things that they were either interested in or had - felt like they have like a good amount of experience. So, I think, you know, one of the women was very active in the community and so she was like recruitment, I've got this, I'm going to be able to - you tell me how many women you need for this workshop and like no problem, I'll be able to do that. And again she was the one with the - she had really strong language skills in a few different languages so she was able to recruit different communities that we wouldn’t have been able to. 

And again one of the other ladies said that she really wanted to kind of like - if we did a workshop she really wanted to facilitate that. So we partnered her with what I think it was a nurse practitioner and they delivered the workshop together. So it was kind of just like sat down talked about it, talked a little bit about the logistics of it and then also like matched experience and interest and we went from there.

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Interviewer: So what kind of skills do you think researchers need to bring to the table then if they're going to be part of the partnerships?

I think a big one is self-awareness, like an awareness of the power dynamic that exists in research and being willing to address that. Because when you're bringing - if you're bringing patients or community members in and trying to maintain the kind of typical power dynamic, then it's not going to work. So I think being willing to be self-aware and to acknowledge that even though these folks might not have the same research training or specific scientific knowledge that you have, they've got tons of expertise and they are experts in whatever it is that they bring to the table which is just as important. 

So I think kind of being able to step back and to really think about what it is that they're bringing and highlight that as value in the project rather than viewing it sometimes as something that's just going to add time or money or whatnot. So I think patience is another thing you probably need to have [laughs] to be involved in that work. And then just like I mentioned some basic training, resources to go to the same way when you're doing a different type of research you have the gold star for whatever it is, knowing where to look for okay how do I do this if I come up against a barrier in this research where I'm engaging patients, having somewhere to go and get some kind of answers or a resource would be also really important.

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Interviewer: So you also mentioned training as sort of research training and resources, is there any kind of other training you can think of or specific resources ideally that you would want to see to help support researchers?

I mean I think I mentioned the self-awareness thing, I think that's an opportunity for training. So like when I worked in community-based research we had a training for all new staff and also for any new patient, or sorry community members, who were on research teams. And so even the training itself had different members in the room but we were all at the same table learning the same stuff. And I think that was really important because it was kind of like demonstrating what we were learning about and what we’re going to try to do. So that was really helpful. And just that kind of basic training around, you know, what does it mean to be a researcher, what kind of power does that potentially come with? And I think basic training on being aware of that is hugely important to be actually able to partner with patients or community members or anybody.

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And also really importantly having some sort of reimbursement honorarium, something that shows that you're valuing their input. Because I think it's really great to involve patients, but sometimes patients get involved and they end up getting really involved because they may be very passionate about a certain topic but then they're not - they're the only ones who are sitting at a table who are not being compensated for their time. 

So I think that that's like a very important thing to consider is, you know, if we're going to do this project do we have funds set aside to acknowledge the time or whatever else it is. You know, if they have a 9-5 job they can't necessarily come to meetings during 9-5 so is the research team going to kind of partner in a way where they're flexible just like the patients probably being flexible.

So at the time when I started on the project my - the research coordinator on the project had already known a few of the community members for a while. So it was really - it was a really welcoming space I think for everybody. And I always found the conversations to be pretty comfortable. It was - everyone seemed kind of happy to be on the project, happy to be there. And like I mentioned everyone was being paid to be there so there's - there isn’t that kind of - because I've been in settings where, you know, you're an unpaid student for example or something like that and you know that in the back of your head and it totally influences the way that you interact.