Suzanne is a retired school administrator who works part-time as a university instructor. Suzanne first became involved in research as a participant in a food and diet study at a local hospital. When the study ended, she provided consent to be contacted for future research, which led to her involvement with the Ontario Drug Policy Research Network (ODPRN) Citizen’s Panel. The panel consists of volunteer citizens from across Ontario who work together to ensure that the ODPRN points out issues of importance to the public, and helps to hold the organization responsible for including these priorities in all aspects of their research. Suzanne’s role as a citizen is to attend bi-monthly meetings and provide feedback on current research projects and the outcomes. She has learned how the patient voice can contribute to medical research and reframe how medical research is being done. Suzanne’s experience with ODPRN has been positive, which is partly due to the respectful environment created by the researchers. Each researcher listens to, engages with, and provides meaningful feedback to each individual on the panel. Suzanne recommends that researchers who want to partner with patients/caregivers in research should have similar qualities. She also recommends that persons interested in research partnerships should give it a chance because the experience is rewarding regardless of how difficult the research process may seem.
We meet online every two months, and that meeting time is set by sending out a survey and seeing who’s available, when, within a specific timeframe, and then the one when most people are available is the one that turns up, and all of those so far, I’ve been able to make, so that’s been good. It always creeps on me faster than I think it will, and two months seems like a long time and, you know, I think okay, well I’m going to go and look more carefully at those modules, I’m going to read over that report and something else has just come out. And then all of a sudden you’re at the two months and oh, I need to do that tonight, but it’s been manageable. I, you know, I always wish that there was more time and that I use my time more wisely to get some of these things done, but it’s been manageable.
And we’ve met in Toronto, as a whole in-person group, three times. That’s pretty easy for me, I’ve got family in Toronto, so coming up for those meetings has been pretty easy. Much more difficult for some of the other people on the committee who have to fly in from different areas, and the last time we met some poor woman got delayed in a northern airport, and she was there for, like it was a, I believe it was a two-day session, and she got there for like about the last afternoon and it was, I forget whether she was fogged in or what it was, there was just no, she just couldn’t get here. So, not a big deal for me, but certainly a consideration for lots of people from the other more remote areas.
Interviewer: What would be your preference for terminology?
I honestly don’t know. Partly because it needs to be something sort of generic and fluid so that it’s not so restrictive that people can’t participate, who have a legitimate right to participate. I don’t know, citizen participant. Yeah, it needs to recognise the legitimate involvement in the research process, but also signify that I’m not the scientist, I’m not the medical expert, I bring a different perspective, legitimate but different perspective to the research. I honestly, I can’t come up with the term, I don’t know.
Interviewer: Does it having a terminology matter to you, is it important to have a very specific term or?
I would be more comfortable if there was a term, and if there was a general consensus of what that term referred to. And things evolve, terms do evolve when you either label it, it generally morphs into more or less according to use. But yes, it’s a lot more comfortable to me personally to be able to refer to something by a label or a term. That’s me.
I think I was expecting that being involved as a research partner, as a patient research partner or a citizen research partner, would probably be reading over some statistics and saying, yeah okay, that makes sense to me, I understand this, that you know, there’s nothing wrong here that I as a citizen could point out, and thinking you then signed off. But the ability or the opportunity to be involved and actually determining how some significant research money is going to be spent by sending a focus and choosing a focus and helping decide what, from a citizen’s point of view, is the most important priority right now. That’s pretty powerful. And when I understood that that was part of our role, and I think really that that, as more and more researchers are required partly for their funding or their ethics or whatever, to make sure that there is a patient voice in their research. I really think it’s going to become more and more, not just signing off at the end, but actual involvement, engagement, priority setting, reviewing, the whole knowledge translation business, I think it’s really a growing area of legitimacy that is going to be required, and I think again, is going to just add so much value to research.
So, but now, as I was saying, we are in the process of actually working on and creating some training videos, so that other people who may want to join the drug policy research network committee, or might want to be involved in patient research on their own in some other way. These training videos will help, hopefully, will help explain both what we are doing and how all patients can play a role, if they choose, in patient-oriented research to get their concerns and their focuses and their questions legitimised and become part of the mainstream medical research.
Well, I guess one thing would be, how to understand, how to read, interpret and … not a statistics course, but more training that would say, look where the focus is, look where the discrepancies are, look where there may be questions that aren’t answered or were never even asked, look for the omissions. So, that kind of training I think would be quite valuable for anyone wanting to get involved, because I think that was, even though my background is academic and I am to a certain extent familiar with reading research and analysing and those sorts of things, but it’s definitely something that is really important, and shouldn’t put people off. It’s got to be sufficient training to make people feel confident, a certain amount of self-efficacy for I can do this, because they’ve gone through it a few times with their hand held, in a training situation, and then they can feel confident that they can do that.