Mona has been with St. Mary's Research Centre since 2014. She graduated with an MA in Social and Cultural Anthropology from Concordia University in 2013. Mona has worked as a research assistant, project coordinator and qualitative researcher to support projects related to patient and healthcare staff experiences of care, the co-design of quality improvement projects, and producing self-care services and programs. She has also worked on a project to adapt women’s stories for an exciting new mobile application that will offer women who are preparing for breast cancer surgery access to the stories of other women with lived experience of breast cancer surgery.
I don't know if it is a challenge but you need to really understand that the time commitment will be longer when you are working with patients, which I think is valid and I think it occurs for a very good reason because there is more consultation. But I don't think that's necessarily challenging if you're working that into your schedule and into your budget. There were one or two incidents where ideas of patients conflicted with clinicians for sure. So that was more of a challenge to try and negotiate to see what we were going to do with this kind of issue.
Interviewer: And was that resolved?
Yes, yeah, I think it was, I think it was resolved and by stating in a diplomatic way the two different viewpoints within the materials basically. And I think its reality. So that's one of the advantages of patient engagement is that I feel that the intervention we developed was very practical, it was pragmatic without being too theoretical, without giving too much information. And so I think that's the end point. And I also think that it helped to reflect the reality of patients at that moment in time and so that is why I also think it is necessary also for them to know that clinicians and patients don't necessarily always agree on the next steps and how to proceed.
Interviewer: So tell me a bit more of what you felt were the benefits overall? Did the project take any directions that you wouldn't have anticipated or were you able to do different things than you might have anticipated?
I think it pushed us to move forward and be bold within our research. Having patients involved at every level really keeps patient's needs and perspectives top of mind at really at every level. So when it arose that we needed to have various methods of delivery for this type of intervention, we were bold enough to explore all of these avenues. So that included the development of a video.
And so of course we had other expert researchers involved who had expertise in terms of public service announcements etc. and we - along with the patients, we explored in which way we could do this video and we ended up doing an animated video. And so that - it's something that takes - it is definitely more effort, it is definitely extremely rewarding and in order to keep patients in every step of the process for example you have to figure out how you're going to do that if you're going to develop something like a video.
And so we - when we decided on the animation, we wrote various scripts and we asked the patients to choose for us what kind of message, what kind of visuals would be the best, how we're going to - what was the tone of the video, the mood of the video, all of that was conducted really with the patients. They told us what they thought it needed to have and then the animation experts, video experts etc. proceeded to make it happen.
Interviewer: And what was the purpose of the video?
The purpose of the video was to garner interest because the intervention that we ended up developing was a series of booklets, a series of written booklets according to various themes that patients identified of information that they felt patients needed to have at the end of active cancer treatment. So with the video the purpose of it was to promote this and to incite people's interest to go and pick it up.
And that was also part of the message that patients told us as well, they told us we don't want to read a book of information when - after we finish treatment and we want to move on with our life. We want to be able to identify our needs first and then receive small snippets of information. So the written materials were fashioned in that way, a series of different booklets, the first booklet people were able to identify their needs through a simple questionnaire. And then in the first booklet it identified which other booklet you should go to for specific information such as finances, emotional issues etc. etc.
So, in the video we briefly explained how easy it would be and not necessarily a huge commitment of time, it's the time that you want to put into it, and what the particular rewards possibly could be for you if you went and started exploring this kind of material. And the animations was chosen as the [kind of way] to go because it was more modern, it was a little bit lighter without being irrelevant or too fluffy and I think it worked brilliantly thanks to them.
Well, I - you know, it's a reality that there's limited funds for research period and for qualitative research it's even more difficult and more challenging to receive funding. But having said that, with the - there's a move, you know, from, you know, inpatient to ambulatory care. It's a trend that's happening in all areas and for all diseases and so in order to be able to equip patients to self manage and to know where to look for help and resources, these kinds of projects are really, really important. So I have the impression that funding agencies are more aware of this and are more open to receiving and exploring these kinds of interventions. But we shall see but I'm hopeful.
Interviewer: And were you able to remunerate the patients that you worked with as partners, was that ever an issue?
We did offer them honorariums for sure and too it was told to me several times that that kind of payment was not necessary, it was told to me by the patients. And we had to insist with some patients that they take this token of our appreciation.
Interviewer: And do you think that's common elsewhere, where people would be willing to do that on a voluntary basis?
I think it depends on how rich the process is for them. Because when we were sitting down with the patients, whether it be with the advisory, whether it be with the individual focus groups, we were always cognizant of letting them know that we could not do the project without them, that it was from their ideas and their perspectives that we were going to develop something. And also the fact that we validated the development and the intervention with them before we moved forward with any other step, I think was enriching for them. So I think they were very aware of the value that they brought to the project and I think that's probably why they felt they didn't necessarily need that remuneration.