Nicole

Nicole

Nicole is a research associate at a hospital and part of a research group that focuses on improving patient outcomes and experience with surgery. While working on a project about having an audio recording device placed into the operating room, Nicole learned how important it is to work with patients on research that will directly affect patient groups. Through a co-ordinator, the research team was connected with patients with experience as surgical patients, who then applied to be patient advisors on the project. These patients became partners on the project and helped the research team understand how patients may feel about having a recording device used during their surgery (e.g., how the recorded information would be used, and how patient privacy would be protected). Without the patient perspective, the research team would not have fully understood how and when to approach patients when recruiting for the project. Nicole is a strong believer in the importance of patient engagement and hopes that more guidance and resources will be made available to support both patients and researchers interested in partnerships on research projects.

Researcher

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Yeah, I think — I don't know, just do it. [Laughs] And I think just view it as truly a partnership, to not view patient partners as like not researchers per se, or like as just a token patient partner, so that you can get a grant. But I think to view it truly as a partnership and to ask each other like what do you want and where do you see this going and how can I help, I think are important questions. And so be clear to set that up from the beginning so like everybody understands each other's responsibilities and roles. And, yeah, I think just and checking in regularly, like regular meetings, and overall I think just basically listen [laughs].

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And then we also worked, like set up meeting times that were like best for them, because one of them is a student and one of them has a full-time government job, so there's like only certain days and times that can work for meetings and stuff, so we tried to like base it around them and what they wanted as much as possible.

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The hospital has this group called PFAC — Patient Family Advisory Committee maybe it stands for — and so we went through them. We advertised on the website and then we have someone here who is part of the Strategy for Patient-Oriented Research (SPOR) Support Unit, part of our Methods Centre, so she helped sort of put the word out for any patients that were looking to partner with researchers. But yeah, the two patient partners we ended up inviting to join our team, both had seen the advertisement on the website and applied that way.

I think we had quite a few responses because I think the topic itself was like kind of novel and interesting to people and people could understand it, and a lot of people have had at least one surgery in their life or know somebody who has. But I think the challenge was like sorting through them, because I mean obviously it's a volunteer position; I mean we give our patients an honorarium, but it's like it's not their full time job. So it's like how to be rigorous and make sure you have the right fit without doing like a full-out job interview, like hiring process.

And so I think it was just challenging like going through all the applications and meeting with people and like figuring out how to assess who would be the best fit for our team. Where like both the research team and the patient partners could get something out of it, so it's a win-win situation, without being like super — I don't know the word I'm looking for — but like a whole, like a series of like three interviews and send me your curriculum vitae (CV), and all the stuff, like we didn't do that. It was more just like we met one time with people and talked to them; but it was hard to find that balance between finding the right people in a rigorous way but like not being so intimidating and scaring people away from this position that's not a full-time job.

So we had people just basically asked for them to indicate their interests and then we set up the meetings — based on what people had written to us, and just had meetings with people who we thought like sort of would be a good match. And we decided that we would just have more of like an informal conversation in like a relaxed like setting, just kind of like around the table with our group. And we didn't have like, I don't know, like a piece of people with like — we weren't checking boxes or like anything, like in a job interview. And we just like — I don't know we just tried to keep it as friendly as possible, like friendly but still professional. And hoped for the best, I guess.

And we ended up getting lucky in finding two really awesome people, but there were — I think it was a little hard to tell people no. Like because they're like volunteering their time and like they want to help, so it's like it's hard to email them and be like oh actually, thanks for your interest but you know, no. [Laughs] But yeah, so I found that hard; I mean like we didn't get any negative feedback or anything, but I personally just found it hard because like I wish we could take all the patients that want to partner with researchers, but I guess, in order to make sure that it's mutually beneficial and productive, you have to make sure it's the right fit.

And then we also set up like a terms of reference between our groups and our patient partners, to outline what like everybody's responsibilities are, like the research team and the patient partners. And like just sort of like be clear on all the roles and process. And both of the patient partners said they really appreciated that because they know what to expect from us, and they also knew like what we would like for them to do. And then we also specified like they would receive an honorarium and we would cover their travel costs and stuff like that.

And then we also worked, like set up meeting times that were like best for them, because one of them is a student and one of them has a full-time government job, so there's like only certain days and times that can work for meetings and stuff, so we tried to like base it around them and what they wanted as much as possible.

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And we wanted to make sure that we conveyed that information to all potential surgical patients in a way that would make sense to them, like gave them the relevant information they needed to know, it could be easily understood. And we wanted to know when the right time, or how to give them this information was, and it became apparent to us that like we aren't really familiar with being a surgical patient at the Ottawa Hospital, so it would be awesome if we could have people working on our team who have been through the process before to say like ‘hey this would be a good time to give us the information’, ‘this is how I would like to receive it’, and that kind of thing.     

So the two patient partners that we ended up working with, and who still work with us on all of our stuff now, helped us to identify, for example, when in the whole care pathway they should receive the information, and we decided it would be at their pre-operative assessment, before the surgery. And they helped us to design a communications campaign so to pair all the sort of themes and messages that came from our interviews, put them in a relatable sort of way that anyone could understand, pair them with relatable images and sort of the format of how stuff would look. So we designed a poster and a brochure, an information letter and all sorts of different materials that could be made available to surgical patients at their visit and in the clinics at each campus of the hospital. And I think that without our patient partners, I don't think we would have done as good of a job at that. And we've actually had like 100% participation by all the patients who have been scheduled for surgery in the Black box room; no-one has said no, I don't want to be recorded. And I think that success is because we went about this process with patients partnering with our team.

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Yeah, so we did three evaluation surveys which was recommended to us by our SPOR Support person; so we did one at the beginning, in the middle and at the end and it was very positive. We had everybody complete them who worked together, and yeah, it showed - I think it showed overall all the contributions that were made to our research by our patient partners. And then also things that they learned from us, and then also showed us ways we could improve in the future moving forward. So definitely it was a worthwhile activity and I think that it should be encouraged for all teams to do that because then maybe there would be more of an evidence-base for engaging patient partners. 


 

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We had like what we called a Kick-off Meeting where all the stakeholders who were involved in the [mute] got together to kind of like celebrate it being installed and to plan the next steps. And so we invited our patient partners to that as well, and made sure to introduce them to sort of all the key people involved. So by the end of everything I think they had a good sense of like kind of where they fit in the hospital and what they could get — the resources available, and who to go for if you had a question. Like we appointed one person on our team as sort of the lead; so if the patient partners had a question they would go through them, and if we had information to tell the patient partners, they would send it to them.

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So we co-designed the terms of reference together so it wasn't just like our team giving them a thing that's this is what we want. We like sat down and talked with them about sort of how they saw themselves fitting in the team and what they wanted to contribute, what they might be interested in. Told them a bit about some of the ideas we had and stuff. So we drafted that together and basically we just — I don't know if it's just because of the type of people that were involved, but everyone's really good at just being like clear about their expectations and what they want. And then we just kind of put that out in the terms of reference. 

But I think people I guess maybe are only willing to share that stuff because we tried to make it like a comfortable atmosphere and like a discussion rather than like shoving a piece of paper down their throat. Like it was key to develop it together I think, and asking them what they want and what they saw their role as being and what they wanted from us too. It wasn't just us telling them what we wanted from them.