Mpho Begin is a member of the CPCRN Patient Council. She is a Professional Engineer registered with Engineers Geoscientists Manitoba and has a keen interest in technology and how it can be used to improve people’s lives. In this interview, we discussed her experiences as a patient partner, how she got into this work, and what’s next. This conversation touches on technology in health care and what diversity looks like in practice in health research.

Grailing Anthonisen (CPCRN): So, tell me a little about yourself.

Mpho Begin: I am based in Winnipeg, and I came to Canada as an international student twenty years ago. I’ve been in Winnipeg since. I studied computer engineering, then after graduating I decided to stay in Canada instead of going back home. Now I work for a company that works on pharmacy automation. This involves automating all the processes for pharmacies and so forth.

GA: How did you get into patient engagement?

MB: About a few years ago, as a new immigrant, I found it was really hard to learn about Canadian culture and starting to work in Canada. So, I decided to do some volunteer work, to learn about the community here in Winnipeg. I did a community leadership course to learn about how to give back to the community. After graduating from it, they matched us with some organizations that were looking for volunteers to sit on their board.

I got connected with one of the hospital boards to be a member. That was kind of my first experience with the Canadian healthcare system. That was the first step to being a patient partner. Then, I had my first experience as a patient when I had my first child and I had complications.  

While sitting on the board, I was able to understand how the health system worked. After that, I got connected with the Public Advisory Council for Health Data Research Network (HDRN) Canada, and that’s when I got engaged as a patient partner and learned about health research, which was also something that was new to me. Like, ok what is health research? And how does that help me as a patient? With the Manitoba SPOR Unit, I helped set up their patient engagement team here. So, they recruited me and other patient partners to participate in and define what patient engagement looks like here.

GA: It sounds like you had the experience of both the theory and the practice in terms of, on the hospital board, how health care is supposed to work versus how it works in practice, as a patient.

MB: Yeah. So, I grew up in Africa, right? When I grew up, you didn’t go to hospital unless you were really sick. Like here you go for check-ups and stuff to monitor your health. Coming to Canada, this was all new to me. So, this kind of helped me understand how to access care. Also, for immigrant patient partners, that is something totally new to them. If they don’t know about it, it’s not something they’re going to be able to access.

GA: You don’t know what you don’t know.

MB: When I went to the hospital when I had my child, and did follow-up and stuff, but that was the extent of my health care system experience. Then, learning behind the scenes of how it works and policies, then it started to make sense to me.

GA: When you joined Manitoba SPOR’s patient engagement committee, was that their first one?

MB: Yes, it was the first patient engagement team in Manitoba, so we had to work on the terms of reference and figure out what it would look like. As a patient partners, in patient engagement, what kind of activities should we help the researchers with? That kind of thing.

GA: It sounded like it was everyone’s first time, so everyone was learning together.

MB: Yes, it was. And I found that people who mostly get into health research as patient partners are mostly like seniors who are retired, and they are able to fill that role because they have all that time. And that kind of opened my eyes to see how this research is impacting communities that we serve. But if it’s only one voice and that’s less effective.

Canada is a multi-cultural country, you know? And even coming from Africa, that’s 54 countries and different cultures, right. So, my experience as an immigrant here is different from another immigrant. And these are social determinants of health. For me, I was privileged, I came here as an international student. Many immigrants here came as refugees, so their experiences and health needs are different than mine.

And then I came to health research and found that there’s no diversity in the voices that are being collected. So that is something that we are looking into. When we are recruiting, we want to have men and women and youth and immigrants. We want all the different diverse groups to provide feedback to researchers.

I can provide input on how something impacted me, but another immigrant is going to have a different experience. So that’s why I got interested in being a patient partner, to say, hey, you know, there are other communities out there that need to have their voices heard. And researchers will say they need diversity, but diversity is a broad term.

GA: Tell me about the work you do as a patient partner. What do you do?

MB: I sit in the Public Advisory Council for HDRN Canada, where we provide advice to the organization in terms of how to engage the public or patient partners. With the CPCRN, I am on the Patient Council, and I recently joined the research committee. For this committee, we help support the projects. This usually means if the Principal Investigators need anything in terms of how to define the project, define success of the project, or how to evaluate the project. I also recently got involved with the Patient Advisors Network (PAN). There, we review research and technology projects in health care and stuff. That’s something new and I’ll be starting my first project with them. I’ll be helping with project evaluation.

GA: Exciting. What’s an accomplishment or something that you are proud of from your work as a patient partner or member of the patient council? 

MB: I was involved with one project that was trying to find the vaccine effectiveness for long COVID, and we got published.

GA: Congratulations!

MB: Yeah, I’m proud of the knowledge translation part and making sure that the public actually know about the research that’s being done for the public. And that way the public can make their own informed decision based on it, right. I want to bring awareness of what health research is to the general public, especially immigrants who may not know anything about health research.

GA: Do you have any future plans? What do you want to do next on your journey as a patient partner?

MB: I want to still continue working in patient engagement. Even if my time is limited with all my other work and commitments, right, whatever time I can contribute, I want to. I want to spread health research to other communities like grassroots organizations.

I’m also interested in technology and healthcare, and I think it can be especially in primary care.  In the wider healthcare system, there’s so much resources put into hospitals and staff, but I find that primary care is mostly in the community. Technology can help with some of these challenges. You know, people like convenience. We saw with COVID that, you know, people were conveniently using technology for consultation and stuff. And I think integrating technology into the healthcare system can help.