Maxime

Maxime

Maxime is a health policy graduate student who also works as a policy analyst in government. Due to a chronic ear condition, and more recently a jet-ski accident, Maxime has experienced being a patient in the operating room multiple times. While recovering from his last surgery, Maxime realized that he wanted to share his lived experience in a meaningful way to help improve the experience of others. He searched a local hospital website for potential opportunities and applied to become a patient advisor. Maxime was then connected with a research team working on a project that was introducing an audio recording device to operating rooms to reducing operating room errors. After meeting with the team, he decided to become a patient partner and helped to develop a communication campaign for the project with another patient partner. The research team worked to accommodate his schedule and was very communicative throughout the project, contributing to positive working relationships between Maxime and the team. He believes it is important for health services research to focus on initiatives that will directly impact healthcare users and hopes to continue partnering on projects to improve patient experience. 

Patient

Videoclips

Click on the videoclip title for a full page view. Click on the transcript button to open or close the transcript section.

View transcript

Yeah, just involve patients every step of the way because there's an adage in community organising that's Nothing About Us Without Us. And I sincerely believe that it is a way to go forward in healthcare because if we're truly going to move towards personalised medicine, involving patients from day one is as personalised as it gets. Because then you provide agency to those patients and you provide them with the knowledge they ultimately seek to gain, or the experience they ultimately want to see or to have in this sort of project. And so yeah, involve patients since day one, listen to their concerns and of course follow-up once you're done your project to let them know — to let them see how the contributions made an impact on their projects.

Something that researchers should never do is just to have — again like I said, this is my big thing, just to have patients there for tokenism sakes. So just to listen to their voice, yeah, okay, thank you Mary for your inputs on Ob-Gyn practices — we'll take it into consideration. And then never keep Mary in the loop of her feedback. Or just not listen to her at all, and just have her there I mean for no reason, other than just to show hey, we have her as a patient partner and she's doing something great, but we're not actually listening to her. That's something researchers should never do.

View transcript

Yeah, first of all I think — I don't think patients should assume that they have complete, that they have complete authority over a project. Because while the patient voice is obviously important, you have to negotiate that with the research team. And so something that patients should not do is just have too much high expectations. Have self-respect of course, but realize that because you're a patient partner there are other partners on the project that also have an equal voice and that their voices matter too. So it's that negotiating aspect that some patients should be wary of. But on the flipside, what patients should always do, is just being reflexive of their own words and their own comments and to see how it does or it does not fit into the context of the research project. Of course if they feel like something's not right, or they don't feel respected, to bring it up. Don't let it — don't let it sit alone in your thoughts because then that could ultimately lead to harmful practice of course, and a negative experience for everyone involved. So of course just speak up when something doesn't feel right and try and seek measures to address it, for sure.

View transcript

So I'm generally someone that I say yes to pretty much everything and I tend to make things work. So no matter the schedule or whatever my schedule was, being a patient advisor was not — I made sure that it was not going to interfere with my work or my school and whatnot, because I’m still in school. And so the only consideration I could potentially have with this sort of project was maybe the time commitment. But like I said, because I say yes to everything, the time commitment wasn't so much an issue because I could schedule myself and organize myself beforehand. But that was a key component; making sure I knew what and where — or what to do and where to be and at what time so that I can coordinate my schedule appropriately. That's the only consideration.

I didn't find it challenging at all; the team made a good effort to accommodate my schedule; well they did accommodate my schedule 100%, because if I couldn't make then they were not going to convene, so that was a positive aspect of that for sure, yeah.

View transcript

I think a true partnership is when again the patient voice is heard and incorporated every step of the way. Because you can hear patients' voices sure; you can maybe feel like — you can maybe only have the patient's voice there for tokenism sake, it's only being there just for the sake of being there, to take up a quota or whatever, because it's mandated by the organization. But making sure that you actually listen to the voices of the patient, incorporate their feedback. That's what I think a true partnership would be. So listening to the patient's voice, incorporating it every step of the way if it's appropriate, and not making of the patient a subject of tokenism or checking off a box off a quota, or something like that.

View transcript

Yeah, but I don't know what the mechanisms that would be in place specifically at the [name] for the sort of recruitment, but obviously a good path for that would be to consult with the Patient Family Engagement lead at these clinics or these hospitals. But of course just doing just regular recruitment through posters in clinics or hospitals and making sure that these sort of initiatives and programs are well-advertised. Yeah, just in general, sort of more media, more print, televised things perhaps, radio. Have some researchers go out on the mike — on the local radio station, because by the way, radio is the best way to reach a local audience, in case you didn't know.

Yeah, so radio is the best way to reach a local audience because that usually gets regularly tuning in, and especially if it's like a local news show, like CBC Ottawa in the morning or whatnot — people can — people usually tune in there and they can listen to what's going on in the regions. I also know this because of my studies in communication. But yeah, the best way probably would be to just be out there, be present, be in the community, whether it be Community Health Centres, clinics, hospitals — just have some posters, have some flyers. Say hey, we need some patient partners on future projects, would you be interested in being a patient partner, and if you want more information there's two ways, there's obviously the getting involved with the Patient and Family Advisory Council of your local hospital or clinic, or reaching out to the researchers themselves, for sure.

View transcript

Like this is my field of study, health and health policy — and so I found it rewarding too because I got to get the insider perspective to see how our health policies are done on the field and on the ground. And the ability to impact health policy on a concrete level, that's what really made it rewarding to me and also the networks and connections you build along the way.


 

View transcript

I think it's one of the most rewarding aspects of my life and my professional career so far, because it allowed me to develop like a good network and allowed me to practice my skills too — public speaking, media interviews because we did that as well. And even though I did have experience in the past, it's always good to keep up and practice those. So not only was it rewarding personally, but it was also rewarding — not politically, but it was rewarding professionally. So I got to develop my skills, I got to meet new people and expand my network, and just generally get a better sense of who I am and what I like to do.

View transcript

So initially the project was in its infancy, so right at the beginning, and they were still trying to figure out like a role of a patient. And it was the first time that they had done that, and so just when [name]and I sat down together with the research team, we introduced ourselves, we  sort of had the discussion obviously, what can —what are our skill sets that we can bring, and how can we use those skills to benefit the project itself. So [name] had a lot of experience in policy and whatnot, and I had a lot of experience in sort of community engagement, and I also did media in the past. 

And so we decided that the best way that we could use our skills was to look at sort of the policies that were being developed with this project, with [name] perspectives and her expertise, and also utilise my community engagement media expertise to develop this plan of like this communication plan. And so essentially that's what we came up with and that's the partnership we agreed that would work best for the project, but every step of the way they considered our input, whether it be for future grant proposals for example, or reviewing the finalised research papers that came out of this project too. Yeah.

View transcript

Well, not only were they super-accommodating with the schedule but they also kept us fed and gave us a bit of a per diem — not a per diem, sorry; they gave a bit of like an honorarium. And so for the honorarium we got — yeah we received an honorarium which sort of made up for, not lost time, it made up for — it valued our contributions for sure, but we were also adequately fed and we were also provided transportation to and from wherever we needed to be. So that really helped. Those were some of like the barriers that other patient advisors tend to have maybe, depending on the funding of the project and whatnot, but thankfully with this project, they took us into consideration and treated us right.