Linda is self-employed as a writer and editor - primarily in the health communications and medical advertising fields - who has been invited to be a patient collaborator on a number of research projects over the past eight years. Linda was very interested to become involved, wanting to contribute in some way after receiving wonderful care during her treatment. She enjoyed learning about the research being conducted and getting to see the bigger picture, and not only the patient perspective. As a patient partner she has seen that this kind of research can result in improvements for patients. Linda feels that researchers who work hard to connect to patients advisors, such as getting to know them better as people and not only patients, help make new participants feel at ease and contribute to the overall effectiveness of the collaboration. She believes that it is really important to provide patient collaborators with clear expectations of their role in a project, so that they can evaluate whether or not a project is of interest to them and for them to contribute effectively. Overall, she has had very good experiences and feels that researchers were always very approachable. Linda is interested in the possibility of getting more involved in research to build on her experiences and apply her professional skills.
The negative aspects, depending on the project, has probably been in some cases the time commitment. [Pause] Yeah, I really think that’s – that’s it. Sometimes the amount of material that had to be reviewed, and the time commitment, sometimes, but not always, and not always in the projects that require that. It just depended. It might have interfered with a work deadline, and that was frustrating, so yeah.
The other thing – and I – like this is – I don’t know if you can even use this – it’s – at one of the big meetings, where everybody from around Canada was involved, so you had breakout groups. Large – I mean, there were a lot of people – it was one of the – yeah, the twice-yearly meetings. And I know they wanted to have patients in one of the separate group in order to draw certain information, but it meant the patients got to – had to miss the really interesting workshops breakout groups that the researchers and clinicians – and there was one in particular that – and I felt like I was sent to the patient room, in which there were patients that were there for one-off – just for that – they weren’t part of the project. They were just there for that meeting, and there was a lot of ranting about their cancer experience. And I was really angry. I was really upset. And I don’t feel that I contributed much to that, but it was – I know they had – it was part of their agenda that they wanted feedback from patients on a particular item. But it separated the patients, that’s what was that bothered me. It separated the patients from the rest of the meeting in the project, and put them separately in this box, it was - it felt to me. So again, I don’t know how that could be used. Those would be the only negative experiences that come to mind, and I don’t – I think, even if I thought about it more, there wouldn’t be anything. They’re very specific.
Patients get involved in different committees, because they’re all – there are many subcommittees, and I’m involved in the educational materials when that really interests me, and I know that I’ll have more to contribute there. But – and I don’t – again, as I said, I don’t know if there’s a fix for that, because I know that part of the funding structure requires patients to be part of this, but it may become a challenge depending on how these kind of projects are developed in the future, getting people who are working fulltime to commit to that kind of time commitment.
You want to always have, I think, a broad range of patients, young, old, men, women, working, retired, across the board. Because everybody has a different point of view, and you don’t want people participating to only come from certain groups of patients. So for funding agencies to not just, like okay, you have to have a patient on every committee, to say, well, could, you know, for this committee, could we look at this more realistically, because we want to be able to get people who are working full-time, who just finished treatment, for example, who are of a certain age range. Yeah, and so not making kind of a black and white, but looking at it more individually.
How it has kind of changed me? It – well, I – it certainly helped me think about, from a personal point of view, what’s important to me, going forward, how I think about the cancer experience, how I think about cancer. But bigger – sort of a bigger picture than that, what really I’ve learned, is how to place this in the big picture, because – so I’ve come into contact with a lot of patients. I didn’t really talk to patients during my treatment, I mean, other than saying hello in the waiting room, or in the treatment room. Having a chat when you were in treatment, I didn’t talk to patients, per se, about the process, but I have encountered a lot of patients, and people talk about their experience differently. But what I’ve come to appreciate, is even though it is about the patient, and it is about patient-centred care, and focus is very important, but to really make it work, and understand it, it’s been interesting to see that in the context of the healthcare system, and clinicians, and administrative staff, and how it all – and I – what I try to do as a patient partner, advisor representative, however you want to look at it, is to think about my contribution, or my comments, in terms of the big picture, unless somebody specifically asks me how I feel personally about something, or my experience, but as a contributor to the projects, how that fits into the whole picture, hoping that can be more workable in some ways. Because sometimes somebody’s personal opinion is not – you can’t do – can’t always do anything with it, and I’d like to think about that contribution in terms of how it can fit in constructively to the big picture. So that would be my biggest lesson, my biggest – my key learning point from my experience over the past nine years, eight/nine years, yeah.
I don’t know. I mean, I’ve pulled back from almost everything else now except for the last big project I’m on, and I have actually said to people, this is my swansong for patient engagement. And one of the reasons I feel that, is both – is – one of the reasons is personal, the other one is more constructive. I think as I interact with people – other patients on these projects, I see, because I’m so far away from treatment, I can’t comment relevantly on a lot of the stuff that needs contributions from patients on. And one thing would be, for example, the treatment process of one-day, two-day chemo. Like you get your – you have your bloods, and your oncology appointment one day, and then you get your chemo the next day. I had everything on one day.
And so I can’t comment on pros or cons of that, because I can’t comment on the pros of the new system, or cons of the new system, but also just I feel like I’m getting too far away from being able to think about it in a sharp way. And so I think it is good to have people who are closer to the process. Then the other reason would be a personal one, in that… I feel like I’m shifting to a different stage of my life, and I almost feel like I’m hanging on in a way that’s not – I can’t articulate it very clearly - I just feel that… I’m shifting away from it, and it just – I don’t know, it’s kind of like when you’ve – you go back to where you used to work five/ten years after you used – you left the job, and say hi to everybody, and they’re kind of like, why are you here, and it’s like, why am I here?
And so I guess, yeah, I can’t articulate it better than that. It’s just, I feel after nine/ten years – and I think also because I’ll be coming up to ten years, I am done with all of my oncology appointments, and I feel it kind of marks a – marks something. And I may – and also, I’m not sure if this is a security blanket for me, if it’s a good or bad thing to stay part of CancerWorld, in a way. I need to think about it a bit more. What do I see for myself in terms of involvement? I’m not sure. I think it would depend on the project, the people asking me. I think it would depend.
I don’t think I’ll get involved in any more kind of smaller things, simply because I actually do think it’s better for people who are closer to the process to give that kind of input on the sort of focus groups I was involved in. But as for other things, that I’m not sure, and I would imagine for other patients, again, it would be based on their own personal experience with the projects, what it gives back to them, what they feel they’re contributing, what their life is presenting to them. Are they, you know, do they have small kids, and working full-time? Do they have time to do it? So I guess that will be very – more of an individual thing, hard to predict.
So there’s – there has been a lot of different groups now, and so at this point, I mean, it’s – sometimes it’s meeting old friends when I start a new project, which is lovely, including people in different parts of Canada, and from Ontario, which is usually a big part of these groups, Princess Margaret, or Canadian Partnership Against Cancer (CPAC). So that’s really nice. But as I said earlier, everybody has always been approachable, and, I don’t know, it sounds a bit banal to say, pleasant and personable, but they have been – but maybe approachable is a more – I never – I would never hesitate to feel like I – I would never like I couldn’t go up to somebody, and ask them a question, or talk to them about something. So my experience with the researchers has been wonderful.
And I know that the Canadian – the Ontario patient and caregiver group, they give coaching to patients. I think it’s probably a good idea for the bigger projects. And certainly if there is an agenda, if you will, either specific, or just a broad agenda of what – for time commitments that should be a session, an interview, or a meeting with the patient beforehand to let them know what’s going to be required down the road, that shouldn’t be – come as a surprise. But definitely if there is an agenda of what is specifically needed or required. A lot of patients go into these projects as a kind of therapy, and to talk about their experiences, and even sometimes to talk about their negative experiences, and to rant a little bit. And it can… I don’t think in many cases it’s the right context for that kind of dialogue. And I think it can keep things moving forward more constructively for everybody if patients are made aware ahead of time, before agreeing to be in a project. This is what we’re going to need, is this something that’s interesting to you? Yeah, so from a number of angles about what are you comfortable providing this kind of input, do you have the time to provide – to be a part of these committees? But yeah, I think in – it – maybe it’s not necessary all the time. Maybe for a focus group the researcher could say at the outset, this is our agenda, and this is the kind of information we’re looking for from you, just to sort of set the tone. But I think for some – in some cases the coaching – and I know that a lot of places across Canada do provide this, so there would be definitely already, you know, organisations or – committees or organisations to tap into that already do this for patients who are going to be part of patient engagement projects.
You know, I have no suggestions about that. I’m always very appreciative when I – and surprised when I am compensated, because I do this because I want to. That being said, I think when you have patients on a four-year project, and making significant time contributions – I mean, I think it’s nice when we have a focus group, and coffee and cookies are provided. I think that’s lovely, so anything beyond that I think is extremely generous. But I think for sure, when it’s the bigger commitments, the bigger projects, and the bigger time commitments, I think it should be looked at in compensating patients.
And not hugely, but something, an honorarium, yearly, let’s say, for a three- or four-year project, for sure. I think you need to recognise that – they need to recognise that that is a time commitment outside, Everybody has significant things going on in their life, but you have to take time away, or do this – review materials at other times. And I think it’s an important recognition also, just plain and simple.