Esther is a postdoctoral fellow at the Bruyère Research Institute and her work focuses on three areas: people living with HIV; the maternity health care system; and homelessness. She has worked with a research team that focuses on people living with HIV and AIDS that has had a longstanding history of partnering with community members. This experience has inspired her to build her own research team to include six academic investigators and seven community scholars. Esther was successful in her efforts to obtain project planning funding that allowed her to provide funds to people on her team termed ‘community scholars’. Esther believes it is really important that everyone on the team is treated as an equal partner and is compensated for their time and contributions. Esther hopes that in the future there will be more funds available for patient-oriented projects and that teaching about how to build effective researcher-patient partnerships will be included importantly in post-secondary university health programs.
Another problem I have is with the SPOR grants. I find, grants that are specifically for patient engagement, tend to have the idea that you need to find that funding. Yes, a post-doc, just come out with my PhD, I haven't worked in some massive institution. Honestly, I don't know where I'm supposed to get much funding from to do this kind of research? Like, it's just, it's next to impossible. And, I find a lot of people are having these problems. And, the people who don't have the problems, they just have the right connections to be able to write the right letters of support. And, then I don't find that correct. It's actually a real downer, on especially new investigators, to do this kind of work, when there is no funding for it, unless you have much funding, which I don't know, how I'm supposed to get that.
And, that team already had integrated three community scholars. That's how they called them. And, I think, that's a fantastic term to refer to the peer researchers. They had made sure that they would find three people who had a bit of a different background in their experience with living with HIV. We had a woman. We had an older gentleman, along with lots of other chronic conditions and, living in different parts of the country. And, I was fascinated by that idea that anytime we analyze a study and, we want to review those results, we talk to those community scholars about their experience. How does it, how would that research have any kind of impact on their lives? Or, why?
And, I had a colleague at the time, [name], who was a research associate on the team, as well and, she was already quite, she seemed to be quite experienced in doing this. So, I learned from her to always remember that at any step along the research process, to check in with these community members and, to make sure that they either agree with what we say or, really give us the input. And, they often have changed some of the things that we wanted to say or, some of the messages and, the way we would write and communicate. So, starting, since that project to me, so, now it's such a natural thing, whenever I want to do any kind of research, it's a given that I have to have research team members who have lived experience.
And, I remember there was something that was very shocking to me that I never even considered, because, I just don't live that life. And, then, I made sure that I would then include those into my research questions. So, since then, I've now developed a research team. Tomorrow we are actually having our first large planning meeting. And, what I find is super exciting, is that we are a team of six academic investigators and seven community scholars. So, I have my colleague is also a person with lived experience. She has been on many other research projects in this kind of role, so, she knows what it means to do research. What can and cannot be accomplished from it. And, speaks the language of it, easier than maybe some other people. So, she helps me [unintelligible] and, that's fantastic, because she helped me find these other women. I always make sure that anything I send out to the team, I have it reviewed by her first, to make sure that I'm not stepping on any toes that I use, like, I'm confident myself that I would use good language, but, I think, it's just better to have that other set of eyes, of somebody who actually lives it, to know, is this appropriate or, not? You just never know.
So, I find it, I find it is very exciting. We meet very regularly. I want to have this very close collaboration with her throughout the whole project. And, so, tomorrow, we are bringing all these community scholars and other researchers to Ottawa to have a large planning meeting. And, doing that, we will decide on the outcomes, on our variables. The study will mostly be done through Health Administrative data at ICS. But, those people with lived experience, they can go through each of those variables with us. I'm going to give them time to explain to them exactly what these variables mean. But, they are, they know what is important to them and what isn't. And I like, the idea of having them in the room, at exactly the same time as the obstetrician and the midwife and, the primary care physician and, the infectious disease specialist, to make those decisions, all as a community. And especially like that it's an equal number of both sides. So they actually feel like they have a voice. I think, that's key.
Right. So, again, I got lucky, going into a team that was quite experienced with this already and had the resources laid out. And, so,[mute] had developed what's called the community school of guidelines. So, it's a, it's just two pages. It's relatively simple, but it's very clear. It outlines the roles of the researcher. It outlines the roles and responsibilities of the community scholars. And, it's an agreement that is made at the beginning so, we read it together.
For example, for the planning meeting tomorrow, and I will meet some of those community scholars for the first time, we will read them together. We will discuss them. We can still make changes to them based on their or my needs, to make sure that we are all on the same page.