Zarah is a program facilitator at an academic hospital where she supports research teams at the institution and in the community who want to partner with patients in their research. She had studied global health and public policy in graduate school which contributed to her interest in reaching out to involve patients in helping to guide research initiatives and priorities. In her role, Zarah interacts with researchers, research and hospital staff, health care professionals and patients and she is always learning from each interaction and constantly thinking about how she can better support these individuals in developing research partnerships. Zarah believes that communication is a key ingredient in forming partnerships – to ensure that everyone is aware of each other’s motivations and expectations. For example, she suggests that research teams co-create (with patient partners) a terms of reference that can be continuously referred to throughout the research project, helping to keep all parties accountable. In the last few years, Zarah has seen the growing interest in patient-researcher partnerships and has heard many stories – both successful and challenging – about developing partnerships. She hopes that in time, research partnerships become more naturally engrained in the research process and that reporting guidelines are used so that patients and researchers can all share and learn from one another.
I think being unprepared for how much – for how difficult it is to hear patients’ stories and, you know, it’s difficult for me to hear it and obviously it’s difficult for the person to live it, but I think maybe that’s something that might need to go into your question about training, actually, is I work hard to develop relationships with the people that I work with, and it’s difficult when the patient that I’m working with has this disease experience and it maybe relapses and has something else, and so there are days that I just feel like really crumby about that. You know, it’s sad and I think in other health care professions there are support mechanisms for that, so physicians are taught about compassion burnout and things like that – nurses and other health care professionals as well – and how to handle grieving and working at the same time and things like that. But I don’t think that we’ve come to that point in research yet where we’re asking people to work closely with patients, develop relationships and trust and things like that, but there’s no support on the other end of like, oh what do you do when someone that you’ve worked so hard to develop a relationship with is no longer with you, or something like that. You know? So that has been hard – that would be like the negative thing about my job that I’ve had to kind of like reflect on and be like, okay, well I need to create those supports for myself, and so, funnily enough the Patient Family Advisor Program has been a really great place for me to turn to for support, like me as a researcher even, so yeah.
Like, obviously we try to be as empathetic as possible, but yeah, and in doing that we don’t want to say the wrong thing, you know, we don’t want to step on anyone’s toes, and so maybe it would be interesting to see like what kind of training would look like to be more supportive of that, yeah.
And so I think what ends up happening is people don’t report on that part of their research, it’s we’re trying to get the results of our trial out, and so we put that, we publish that, we create a manuscript and that’s published, but we don’t do a very good job of reporting our patient engagement method. And so I think that is somewhere that we can start to focus, because then we’ll have more information and so we can evaluate impact. But before we start reporting on it, and having enough literature to look at, I think it’s a very difficult thing, nearly impossible, honestly. Like we found less than 1% of trials reporting on patient engagement, we know it’s not because people aren’t doing it, we know people are engaging patients because it’s required by funding agencies, but they’re just not reporting on it. And so because of that it’s hard to tell what happened and so we can’t study it.
Yeah. It's part of what we’re trying to study right now, actually. It’s an interesting field, again, for so many reasons, but it’s not like any other way that we study rigour or validity, you know, how do you study the validity of a patient experience? It’s not really something that we have developed, or I don’t even know if we can work on developing it because it is such a unique thing. And so impact is a really interesting question, and I think it comes back to the interpretation of the team. So the team will have goals that they want to achieve. Has the patient partners’ involvement changed that in any kind of way, both positively and negatively, right? And so I think it really is dependent on what the team was looking to achieve. Now, I think it’s important to be clear. When we study impact we’re not necessarily saying like “Was this person’s role valid or not?” I think we all know and accept that having a patient at the table is very important, and that’s not something that we should question, and it’s not studying what they did, but I think it’s taking the view of like, okay, what has this done to our research as a whole? Has it made the outcomes more relevant? I think that’s something that we can measure. Has it improved the way in which we work with people and look at our participants? Then I think that’s something that we can measure as well. But I don’t think – and I think it’s a slippery slope to say we’re evaluating someone’s role, because we don’t evaluate the other people’s roles in our research team. But I think if we look at the impact of patient engagement on research then that’s an important question to ask, because I think we should be measuring the success. And if we’re doing things wrong and maybe it’s hindering our success, then we should understand that as well. So it’s maybe evaluating the impact of the practice.
I work as the strategy patient-oriented research program facilitator, which is a mouthful, but essentially it means that I am lucky enough to work with the Ottawa Methods centre coordinating the support program on the ground here. And so that is to say that we facilitate and help to support researchers who are looking to partner with patients in their research, both at the institutional level and then more locally as well, so either within the Ottawa community or within the province.
And I’ve been working at this position for the past three years. I got into it in kind of a funny way. I was straight out of my master’s degree, and I studied global health and public policy. And I was very interested in that policy piece, so I already understood how policy comes to be and the importance of evidence-based policies, and things like that. And I also already had an understanding of like health inequalities and things like that. And so I came across this job description, and I was reading up on it, and I was like, “oh, research that involves patients in guiding and determining, from the outset, what it is that we’re going to study”. And I just though, how is that not already the way that we do things? It was kind of like a “duh” moment for me.
And so I applied, and I was so excited about it. And that was exactly the way that I explained the position to people who asked me about it – it was just like, yeah, we’re conducting research in partnership with the people who are meant to use it. And it just felt so obvious to me, so inherent to me. And so I was lucky enough to get hired, and it has been interesting because it was then - and still a little bit is – kind of a relatively new field where we’re just still kind of like figuring things out together, and so there was a lot of learning when I first started. And I think it’s different from a lot of positions in that I get to take my time in learning and collaborating with people, and just being as open as possible and as flexible as possible to listen to my patients and learn from them.
Oh my gosh, every day [laughs] I feel like I learn something new, which is why I love it so much. And I always say my best days are the days where I actually get to sit down with patient partners and talk to them and hear about their experiences and their stories. I think one lesson that I keep learning over and over again, and I don’t think I can learn it enough, is the importance of communication, it’s just so paramount. And so, like I always say, you know, one of the things that we often take for granted is, you know, behind a lot of the success of patient partnerships is building trust and having that kind of a relationship, and I think that communication is a big part of that. And so, so long as you are making sure that you’re clearly identifying the reason why you would like to partner with a patient.
And then on the other side of that as a patient partner, if you’re clearly saying “Okay, here are my expectations to this partnership,” then I think that is a significant key to success. So I’d say communication is just like, yeah, I cannot stress that enough, from, you know, the initial onboarding process of, you know, just be polite and have manners and think: Okay, what can I do to better support this person that’s coming into our team to make them comfortable. You know, give them as much information as they need to comfortably participate in our research project, you know, straight through to the actual conduct of research so, okay, now we have this person involved, they might not be involved in the entire project but they’re involved in this piece, how can we make sure that we’re continuing to communicate with them to let them know that they’re still important but they are still involved, and that they are still important to the team. And then, you know, finally this dissemination so … They’ve been involved in this research, they own it as much as anyone else, and so how can we make sure that they can take that and bring it to their communities and share it with whoever they feel they would like to. So yeah, it’s just remembering that communication and being explicit about things is so, so important.