Wendy

Wendy

Wendy is a registered nurse and professor at a university and her research focuses on Indigenous peoples’ experience with cancer. Wendy previously worked as a clinical nurse practitioner in outpost communities in the Yukon Territory, and after a rewarding clinical career, she went to graduate school and started a career in research. Wendy’s experiences working as a nurse practitioner taught her that if you want to do research with Indigenous communities then you must develop true partnerships with community members and gain the trust of the community. Without this partnership, it is impossible for researchers to identify priorities and opportunities to intervene and develop interventions to improve health outcomes and services with in Indigenous communities. Wendy notes that creating these partnerships requires a significant amount of presence within a community to build trust, and with time more opportunities to create partnerships present themselves. One of Wendy’s memorable experiences was when an Indigenous group invited her to join them in fostering research that would help improve the health of their community. Wendy believes that the importance of the Indigenous voice in research and education is becoming increasingly recognized, and that the importance of partnerships continue to be positively acknowledged as Indigenous communities engage in rigorous research for positive health outcomes.

Researcher

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Interviewer: Do you have any advice or something that researchers who do want to if they’re getting started, that’s something they should never-

Oh never do, yes, never be an expert, at least never say that you know what’s best for the communities ... unless you’re an Indigenous researcher and then you can have that conversation. But I think that that’s part of the building trust as well is that people need to know that you really want to work with them to address the issues in their communities, so I think-. Another not to do ... the other not to do, and I think that this is when I started doing work. I thought that we were going to – you know once people kind of agreed to work with me that we were going to move forward with data collection and we were going to sign consent as I just did with you for this research study and it’s all really clear in my head that when I’m– That assumption I would never make going forward in a community and I’ve had it where I had a whole, you know, my data collection focus group set up and we got there and I mean it absolutely didn’t happen because people weren’t ready and they weren’t ready to go there with me. So I think that’s the other don’t do is don’t expect that your data collection or your research process is going to advance the way that you want it to, the way that we as researchers want to get things done.

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Oh well – yeah so one of them, and this didn’t happen for any reason. I don’t believe it was an intentional reason but you know I travelled to the community for this meeting with all my briefcases and forms and everything else and arriving and, “Oh are we supposed to have a meeting? No we have to go. We have 20 minute what would you like?” and then that was it; and so you know was that a negative experience, not really but it was frustrating from a research productivity level. But we laughed and ‘yeah well okay 20 minutes, well what can we do’, okay we’ll cut to the chase because I had some lists to tick off that I had done. Yeah I think that that’s – and then another frustrating thing – and so again it’s just that path. That path isn’t – I’m not the one setting the path, I’m the follower, I’m just to trying to facilitate the path a little bit but I’m really not cutting the trail. So then another – you know again from a research perspective is that I ... well it just doesn’t go as planned.

Some researchers also mentioned that the time commitment to build relationships with patient and community partners ended up taking longer than anticipated (e.g., traveling to meet with patient partners in person). One researcher acknowledged that it’s best to plan ahead and incorporate the time commitment for patient engagement as part of the research plan and timeline.

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Well terminology does matter [laughs], terminology matters a lot. But that’s sort of an interesting question because it makes me reflect on when the question – when I ended up talking to a community group about their roles we started that by asking, I asked them how would they like me to refer to them, like because when I make an agenda you know I put my name and I’m the researcher at the University of Ottawa, what do they want their titles to be with their name as part of the partnership team; and that’s where I was told “We don’t want any titles because it could change. I could be part of the management team here but now I’m a patient over here because I’ve also had cancer and I’m looking after my mother.” So they didn’t want any titles they really wanted to be their name and their community, so you know on a broader level for this research partnership science what to call – I really don’t know. I only refer to people I work with as partners or community partners, yeah partners is the word that I use.

It is interesting because I did actually ask my team “What do you want to be referred to you as?” And they didn’t want any titles, but community partner I think is a pretty – I think I’d be really careful with anything that has connotations of power imbalances, community experts.

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Well a true partnership is where the idea – the problem that the research is addressing has been co-determined by both, and again that’s the voice, I mean really it’s more determined by the community; and then ... having their – I don’t expect the people in the community to be writing the grants to get the funds because a lot of times we talk about capacity-building in the community but they’re not interested in capacity-building to be research grant writers, you know, they’re building capacity to improve health services to improve the health and wellbeing of their community; so the researcher, you know, we do our academic piece on that side and then – but having them in agreement, so making sure that the direction and the methods that we say we’re going to use are actually consistent with the workings of the community and the values of the community and the flow of the community. 

So then with that, so the proposal and submitting for the funding, having in the actual budget a large chunk of the money to go to the community because they’re doing the work; so the partnership-. It’s not the $25 gift card to come and participate in an interview. It’s actually money going into the community that they can use to have staff to support the researchers and the coordinators. So having staff in the community I think that’s a really important piece of a partnership because otherwise nothing is going to happen and if it is it’s going to be all driven again from the researcher sitting in the university office, so having the partnership people have to be on the ground in the community actually as part of their work is working on the research; and then the data collection analysis having their involvement. 

Then a complete open discussion about how dissemination of results is going to look, and again having – when we – you know as part of a researcher it’s important that we disseminate our results. We have a responsibility to do that, an ethical responsibility not only to our funder but to our participants but it’s not from the researcher’s side, the community partners are part of that. They’re part of the presentation having done presentations with us, having them give input on publications and having their names on them, absolutely that’s also part of the partnership.

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I’ve been working with Indigenous communities for about 10 years now and it was hard getting started, but things sort of snowball once you get in. I mean once you get in, you’re not ever in, but when you start building relationships then other opportunities and doors seem to open; but to get started initially it’s about presence. It’s very much about presence and it’s about sincerity and building partnerships. It’s never doing research ‘on or of’, you’re doing research ‘with’ so it’s reaching out and going into the communities; and so when we started in our – one of our first studies that I was involved in with Indigenous communities we went to community events ...

There was – a lot of my research involves people with cancer, people living with cancer, and so they had a community cancer walk as a fundraiser and so we went there to be seen and to make relations, to get to know people. We just started going into the communities to be present and talk to people, and that is really, I think that’s an important piece to build that relationship. So I think for myself because I had lived in First Nations communities that I – I mean I was really comfortable going into the community and kicking rocks down the road and [laughs] just sort of hanging out.

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A lot has changed for me both from how I see the clinical world and the health services that we provided as western colonisers to the indigenous people but also how I see research informing their health services and we – western research has moved ahead so rapidly, so rigorously, so strongly and it’s made so many leaps in knowledge. But what I see for the indigenous communities is because there’s just such a foundational lack of trust in any western knowledge that before they are going to sign onto the – you know this intervention is going to improve my health and my community’s health because it’s – yeah so that’s another piece that’s changed; but before – to finish that, before they sign onto that they need to trust. They need to first trust that work and they don’t. The bottom line is that they don’t, so it has to be adapted. 

The research knowledge has to be really translated and adapted to their circumstances and their situation and their community. So there’s a lot of work to make western research accessible from a culturally safe perspective, and so what it’s done to me as a research has made me realize that sort of the generalized ability may be possible for populations that are more homogenous or that believe in that process, in that research process; but most of the indigenous communities they don’t and they haven’t, so there’s this huge gap between western science improving the health of indigenous people because anything, you know be it right or wrong, anything that comes from a colonial perspective is looked at first with lack of trust and exploitation.


 

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Interviewer: And what do you think has changed for you now that you’ve gotten involved in these types of partnerships? 

Yeah that’s a really great question because a lot has changed for me. A lot has changed for me both from how I see the clinical world and the health services that we provided as western colonisers to the Indigenous people but also how I see research informing their health services and we – western research has moved ahead so rapidly, so rigorously, so strongly and it’s made so many leaps in knowledge. But what I see for the Indigenous communities is because there’s just such a foundational lack of trust in any western knowledge that before they are going to sign onto the – you know this intervention is going to improve my health and my community’s health because it’s – yeah so that’s another piece that’s changed; but before – to finish that, before they sign onto that they need to trust. They need to first trust that work and they don’t. The bottom line is that they don’t, so it has to be adapted. 

The research knowledge has to be really translated and adapted to their circumstances and their situation and their community. So there’s a lot of work to make western research accessible from a culturally safe perspective, and so what it’s done to me as a research has made me realize that sort of the generalized ability may be possible for populations that are more homogenous or that believe in that process, in that research process; but most of the Indigenous communities they don’t and they haven’t, so there’s this huge gap between western science improving the health of indigenous people because anything, you know be it right or wrong, anything that comes from a colonial perspective is looked at first with lack of trust and exploitation.

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Well I think that it’s – I think that the impact of the partnership is a really important question and I think with Indigenous communities there’s starting to be work being done on how can the partnerships be developed and evolved and sustained in mutually positive ways, so there is some work being done on that, I think we still have a lot of work to do; so as far as – so I think that those are important questions. As far as the impact I think asking the people what is the impact that they want to see, so again having what impact, the impact on what, you know if it’s asking the communities what actually is relevant and most meaningful for them and then looking at those outcomes and are we achieving them; so I think there’s two pieces to that, one is the process or the science of how to have productive positive partnerships, and then the second is, you know, is there something to measure and what is that, and I think that that’s where they, the communities, can really help direct those answers.


 

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Okay thank you, I’m a researcher and an Associate Professor at the University of Ottawa and the School of Nursing and I do patient orientated research predominantly with different indigenous communities now but my story starts back when I was a clinical nurse. I’m a registered nurse and I was a clinical nurse and I worked in outpost communities in the Yukon Territory living and working in First Nations communities working as a nurse practitioner. After that intensive and long and very, very rewarding clinical career then I went into do my PhD, my Masters and PhD and became a researcher and started another career.

So what’s really lovely for me at this stage is that my research has all moved to be involving Indigenous communities and having had a clinical career working and living with them it’s brought the two worlds really together for me. So I have been doing – while I’ve been doing research for over, well if you – with my PhD because that was my second career over 15 years if you count that but with Indigenous communities for about 10 years.

So what made me decide to be involved in research with patient partners is that I wanted to do research with Indigenous communities and you don’t do research without complete full participation and partnership with your communities, so there’s – that is the way you do research with then, you develop the research questions together, you identify the priority, problems that they want to focus on and then develop the questions and what the evaluation framework will look like, what is important to the community to understand, so it was just they go together. So there’s – if you want to work with Indigenous people you do it in full partnership, so really that’s the reason.

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Never be an expert, at least never say that you know what’s best for the communities ... unless you’re an indigenous researcher and then you can have that conversation. But I think that that’s part of the building trust as well is that people need to know that you really want to work with them to address the issues in their communities, so I think-. Another not to do ... the other not to do, and I think that this is when I started doing work. I thought that we were going to – you know once people kind of agreed to work with me that we were going to move forward with data collection and we were going to sign consent as I just did with you for this research study and it’s all really clear in my head that when I’m–.

That assumption I would never make going forward in a community and I’ve had it where I had a whole, you know, my data collection focus group set up and we got there and I mean it absolutely didn’t happen because people weren’t ready and they weren’t ready to go there with me. So I think that’s the other don’t do is don’t expect that your data collection or your research process is going to advance the way that you want it to, the way that we as researchers want to get things done.

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It takes a long time and it also takes presence. It takes presence in the community as well as it’s something that once the trust – it’s always on a continuum and it’s always part of the journey and the trust is always revisited, every time. It’s not – you don’t get to a place where we have trust now and now we can move forward, you’re always revisiting it. And that’s the other interesting thing that sparked me to think about the difference between an individual and a community because many of the indigenous peoples they see – their concept of an individual is much more as a group so it’s not an individual’s participation in research it’s the community’s participation; so it involves many, many more people and I mean you can’t be getting the voice from everyone all the time or the – I shouldn’t say the voice, because you are.

You’re really – you’re getting a group voice, but you can’t be getting consent from everyone all the time, you have individuals that you’re working with but they’re speaking-. It’s often for the community and decisions are made, like we have a project right now where we’re working with a community and we are choosing, we’re actually adapting some western interventions to be culturally safe for this First Nations community, but it’s the community that’s going to pick the interventions based on all the criteria that we as knowledge translation investigators or scientists look at. You know we look at the level of research evidence and we look at the fit and the barriers and the facilitators to implementing it and all those; but they are doing it from a community perspective so other things comes into play as well like the fit, the fit in the context with the culture and the rhythms and the flow of the community.

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Interviewer: And similar to my previous question what kind of skills or attributes do you think that community members need to be involved in partnerships?

So I think that the skills – like when I think about the community members that I work with I think that – and this maybe is really specific to working with indigenous people but part of the skills or the attributes or the knowledge that I would want to see and that I think is important for them is for them to know that what they have to say really matters, that they do have expertise, that their expertise is actually far greater than the outside researcher’s expertise who comes into their community and I think that’s really important for them to know that their voice – that they have a lot to offer, that actually we can’t make any difference to their health and interventions to improve their health if we don’t hear their voice; so I think that’s the main thing is that – like I don’t think they need to understand all the research methods and you know all the details of those skills; and that is – there’s a lot of knowledge there, that expertise there, but I don’t think they need to know that they – I think it’s really–.

I mean I think that they need to if they want to know it and they need to understand that there’s a process and systematic processes and all those things, but the most important thing I think is that for people to understand that their voice matters and that they do. They are the experts and what they have to say is important and that it will be considered by the researcher. So back to what is the expertise that the researcher needs or the attributes and that is really listening and hearing not just giving lip service to get that patient on the research team so that you can say that you’ve got a patient participation, but actually listening to what they say and incorporating it, you know, that’s where the combining the patient’s voice with the research expertise. That is the researcher’s – that’s a skill that needs to come from the researcher, and that’s not easy either because you often have really – you know you’ve got your own ideas when you’re going in to do research on how you think the research is going to go, but then now you’ve got this other voice.