Cathy is a retired educator and cancer survivor who volunteers her time at health care organizations and hospitals. She became involved in research because she wanted to contribute to improving health care for patients/caregivers after experiencing health issues within her family in addition to her own. Cathy’s first experience in research involved being a participant in a large provincial study. This experience provided an opportunity to talk with others that led to joining a patient/caregiver working group who advises researchers on how to translate research material into lay language. Cathy has enjoyed this experience because it allows her to work from home and does not require a large time commitments. In her opinion, she is content with being involved in the later stages of the research process where she can help find ways to share the researching findings to the general public. Her advice to researchers and patients/caregivers who are interested in research partnerships is to consider that there is a broad range of types of participation, and that involvement at any stage in the research process can be considered a partnership. She also suggests that researchers ensure that a variety of voices and lived experiences are included in research.
Interviewer: For sure and thinking about the diversity of it, how do you think researchers could get out to more diverse population to make sure that they are actually having diversity in their research projects?
Difficult and I guess it depends on the research too, whether you go to community centres or cancer clinics or wherever you really want your candidates to come from. But part of it has to do too with I think with a preliminary screening of the candidates and making sure that there are not too many, but they are very specific questions to try to make sure. But you really won’t know until you actually talk to the person and we did the same thing before we set this up. We talked for a while and “Is this going to be a good fit for you? Do I have the experience you need and the same thing for me is this something that I feel I can contribute to?”
So somehow through a survey or questionnaire or telephone contact, but how you get those people in the beginning, probably has more to do with how wide your network is of either fellow professionals or the general public. You know, notices in seniors’ papers or like I said cancer clinics or doctors’ offices and that sort of thing.
I think some specialists are well aware of research as well. I know when my husband ran into a problem, the doctor he saw said “Are you interested in participating in this research”. So, just a big wide network that most of us know nothing about.
Sometimes even you see it in the newspaper where researchers are looking for patients to be part of their project. I would think the network also that’s there because different universities, different research centres have that network. I don’t know whether there’s a public forum that you could use? I know one of the things though that is important, depending on what level you want patient involvement, I’m talking about research and how they want patient involvement, then you need to make sure it’s a good fit. If you’ve got more than one patient involved, you don’t want everybody to be the same, you need diversity and you need different experiences, but you also need a good fit in terms of expressing opinions and getting along, and kind of background experiences. I was part of the development of a form to use to kind of match patient collaborators with researchers, and that might be something too that research individuals could look at to find maybe guidelines for how to find those matches. But again, I’m just an ordinary person who kind of got lucky in getting involved in this, so there are other things I’m sure that researchers can tap into that I know nothing about.
My feeling as a patient collaborator is that you’re making a difference in decision-making and treatment plans and public policy. You think, like I’m just one person and I don’t have a medical background and how can I be doing that? But by getting involved in this you really do feel like you are involved in it. I think it’s important for people to feel that they are participating and rather than just receiving care. So I’m really pleased to see the increase in involvement of patients and caregivers in research.
I think I’ve said it before about feeling that you’re making a difference, feeling that what you have to say is important, but also for me, personally as I’m aging, kind of a sense of self-satisfaction. I can still function at an intellectual level. I can still learn things. I can still analyze information, the things that I did when I was 35 and 40 that made a difference in the lives of children as an educator. I now I still feel, for the most part, that I can contribute it. I don’t know how many more years that will happen, but for now I feel that there are benefits to me as well as benefits to others.
Certainly, as I said before, feeling that your opinion matters, that you are contributing to better health for your friends and neighbours and strangers. The facilitators make sure if you’re on a teleconference that everybody is heard. At first you’ll say “It’s Cathy, and I’m wondering about on page three, I noticed such and such”. If you don’t identify yourself and weigh in regularly, the facilitator will say “Cathy, what do you think about that?” Or “Michele, is that how you feel too?” So you can’t really sit back and say nothing, but at the same time, everybody’s quite respectful. But it’s the facilitators who make sure that the conversation sort of stays on track and then wraps it up nicely at the end. If people sometimes get carried away with personal stories, they’ll sort of redirect the conversation, so that’s very good.
As for barriers, really the only thing is the time. If you’re willing to spend time and my experience with these projects has been that when they say your teleconference is an hour, it’s probably 59 to 61 minutes. It’s not an hour and a half. Again, that’s a facilitator’s skill that keeps everything on track and you’re done and you walk away feeling that you’ve made a difference. So I haven’t found there to be any barriers, but again I like doing that sort of thing. I like participating.
Interviewer: What would you say keeps you engaged in the process?
Probably learning new things, experiencing information and opportunities that I wouldn’t have if I hadn’t been involved and that most people wouldn’t even know about. Now, you do sign a confidentiality agreement when you do any of these, so you can’t talk about the specific project or the outcomes. Once they’re made public, then the Canadian Task Force on Preventative HealthCare has a website and all of them are –okay, that’s how I knew how many topics were covered, so it’s heart related and cancer and other things. Their focus of course is prevention, but also early detection. So I wouldn’t know about some of those things if I hadn’t and it just feeds my interest in medical knowledge and medical progress over the years.
Well back to I think the old-fashioned view that you have to be on-site, you have to be sitting around a table with a researcher, or you have to be contributing something. Well, wait a minute, and also research in the beginning –like when I get involved with a task force they’ve already done a lot of the research and they’ve done the collation of the research. It’s then moving it forward into the knowledge translation part of that. But that’s all part of the continuum and there are different places along the continuum that patients and caregivers can get involved. I was looking at too narrow a view thinking it was very early stages and I wasn’t involved as a participant there, so no I hadn’t been involved in research. And then I said, “What about all this other? That’s research too” and that’s how you get it from the lab to the pharmacy or wherever. My conversation with you kind of helped me solidify that a little bit.
Again, back to being a participant in the Canadian Task Force of Preventative Health Care, someone from there, [name] actually, sent me an email saying, “This course is coming up, are you interested?” So they gave me an outline of it. It was the first time the course had been offered and I like doing things that are first time through, so we kind of all learned together.
What they did with it too was they had the researchers and the patient caregiver participants together for one whole webinar and then we had homework and we needed to respond and we did some quizzes based on our knowledge from that particular session. There were four sessions and at one of them researchers did their own webinar specific to their needs and issues, while patients did another one because there certainly is a point at which your interests and needs are diverse. But I found it very interesting because the researchers were very responsive to the patients’ issues and likewise [unintelligible] and I think we all came away with a better understanding of our current roles and potential roles.