Season 6 Episode 2: The Power of Patient Partners in Research

🎙️ In this episode of the GOSH podcast, co-hosts Carly and Sabrina sit down with Karen Bemister, a passionate advocate and patient partner in research from Ontario, Canada. 

Karen shares her journey as a patient partner—someone with lived experience who collaborates with researchers not as a participant, but as an equal team member. Together, we explore the value of patient-oriented research, where patients help shape studies, guide priorities, and ensure the work truly reflects the needs of patients and communities. 

Tune in to learn how centering patients leads to more meaningful, relevant, and impactful research. 

For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca

Where to learn more about us:
Twitter – @GCI_Cluster
Instagram – @gynecancerinitiative
Facebook – facebook.com/gynecancerinitiative
TikTok – @gci_gosh

Transcript

00:00:02 Intro 

Thanks for listening to the GOSH podcast—The Gynecologic Oncology Sharing Hub. We share real, evidence-based discussions on gynecologic cancers, featuring stories from patients, survivors, researchers, and clinicians. Our podcast is produced and recorded on traditional unceded territories of the Musqueam, Squamish, and Tsleil-Waututh Nations. It is produced by the Gynecologic Cancer Initiative, a BC-wide effort to advance research and care for gynecologic cancers.  

00:00:36 Carly 

All right, hello everyone. My name is Carly. 

00:00:39 Sabrina 

And my name is Sabrina. 

00:00:40 Carly 

And we are your co-hosts on the GOSH Podcast. 

00:00:44 Sabrina 

Today we are joined by Karen Bemister, an advocate and highly engaged patient partner in research from Ontario, Canada. Patient partners are people with lived or living experience who work alongside researchers as equal members of the team. Rather than engaging in research as participants, they co-produce knowledge; helping to shape studies, guide priorities, and ensure that the work remains meaningful and responsive to the needs of patients and communities. This is the foundation of patient-oriented research, which keeps patients at the centre and emphasizes collaboration, relevance, and impact. Welcome, Karen! 

00:01:31 Karen 

Hi. 

00:01:31 Carly 

How's your day going? 

00:01:34 Karen 

Oh, well, you know, it's always a fun day in Ontario. 

00:01:38 Carly 

Isn't it? And now it's going to be even more fun talking about cancer. 

00:01:43 Karen 

Absolutely. 

00:01:44 Carly 

Yeah. But, you know, we gotta do it to bring awareness, right? 

00:01:49 Karen 

100%. 

00:01:49 Carly 

Yeah. So let's get digging. Let's start it off. Patient partnerships start with lived experience. So why don't you share with our listeners a little bit about your journey with gynecologic cancer? 

00:02:04 Karen 

So in June of 2019, I guess you could say I started my journey. My journey started with one nice little symptom. I was bloated. And by bloated, I mean, I literally grew two pant sizes overnight. 

00:02:29 Carly 

Wow. 

00:02:30 Karen 

So, I’m, as my friend likes to like to term the phrase, a fluffy woman. So for me to grow two pant sizes was huge. So that started my journey because after two weeks of still being bloated with no change, I did go to my doctor and she started the process of doing tests and trying to figure it out. And 12 doctor visits, four different ...  the specialists. 

00:03:12 Carly 

Oncologists? 

00:03:14 Karen 

Well, no, not even oncologists, because I saw a gynecologist, I saw an endocrinologist, and then I saw a gyne-oncologist t all on top of my family doctor. So I saw four different specialists trying to figure out what was wrong with me. And it took the gyne-oncologist who, after surgery or even before surgery told me .... so .... I jumped a little too far in ahead. But the endocrinologist actually was the one who found my tumors and sent me to a gynecologist. But I had a family history of fibroids, so it was pretty much assumed that that's what I my issue was. But the tumors were actually quite large and I had two of them. So she sent me to a gyne oncologist, not because it was cancer, and that was her words. “I don't think it's cancer”. But the tumors were too large for her to deal with or too large for her to be comfortable dealing with. So she sent me to the gyne oncologist. Even the gyne oncologist didn't say, I can't tell you that it's cancer, but they are big, so we're going to take them out. So the gyne oncologist, we scheduled the surgery and I woke up from my surgery to be told I had cancer. So because it was all still assumed that it was fibroids right up until I woke up, at least for me anyway. 

00:04:48 Carly 

Wow, intense. 

00:04:51 Sabrina 

Yeah, I can imagine that must have been scary. 

00:04:54 Karen 

Yeah, four days after my 50th birthday, it wasn't a fun birthday present. 

00:05:01 Carly 

No, not the way you expected to start your 50s, that's for sure. 

00:05:06 Karen 

No, definitely no. But all in all, it took six months for me to have my first symptom to my surgery date and then my diagnosis. 

00:05:20 Carly 

And we'll talk more about that a little later for sure. 

00:05:23 Karen 

Certainly. 

00:05:25 Sabrina 

So thank you for sharing your story. I think that's really impactful to hear. Can you tell us what motivated you to get involved in ovarian cancer research and how you first ended up becoming a patient partner? 

00:05:38 Karen 

So unfortunately, I started, or my cancer journey sort of started before COVID and finished in COVID. So I didn't have a lot of like interpersonal interaction with a lot of people through ovarian cancer at that point because I wasn't ready to delve too much into the disease. I was just focusing on healing and getting my stuff done. But in November, they had an online symposium. Ovarian Cancer Canada had an online symposium, and one of those topics was OVCAN, which was a patient partner initiative for patients to be involved in research not only in grant proposals, but advocacy, education, being involved in projects, in research projects. So I listened to this project and like, or this presentation, I was all in. I'm like, okay, I need to know how to do this.So before the presentation was even over, I emailed the director in charge of that, which was Dr. Alicia Tone. She was the scientific advisor for Ovarian Cancer Canada. And I said, I want in, I want to do this, I want to help, I want to give back, and I don't want people to go through this. And then I got an e-mail right back and said, okay, you're in. And that was in January of 2021. 

00:07:13 Carly 

And how long had it been since your last, like, I guess, cancer treatment? Were you still going through cancer treatments when all this was going on? 

00:07:20 Karen 

I had finished my cancer treatments in April or at the end of April of 2020. But the world was still half shut down at that point. So, it was the most information that I could get was all virtually and I got so much information out of that one symposium that it was really phenomenal. 

00:07:46 Carly 

Wow, that's amazing. So why don't you tell us a little bit more about the projects that you've been involved with. You know, I'm sure you've done many projects. You don't have to say every little thing that you've done, but, you know, obviously you were very motivated to get engaged in that. You got responded to quickly. So tell us a little bit more about the changes that you've made with partnering up, doing all these types of projects and advocacy. 

00:08:10 Karen 

So one of the main things that I love about doing this patient engagement is research grants. We actually, as patient partners, actually get a full seat at the table with Ovarian Cancer Canada to decide who's getting funding, what's getting funded, and how it's getting funded. So I've actually been involved in three different grant proposal reviews in which we've given away millions of dollars already. And to have that equal voice is truly fascinating and amazing. So sitting at the table and being able to change the way scientists think of something because they've heard it from a patient partner without specifics because a lot of that stuff is unfortunately confidential. But we actually had one project, I love telling the story because it was one of the first ones that I worked on, we had was sitting at the table and the researchers had all done their presentations on this project and they scored it huge marks, like high marks. They were ready to just throw money at this project and then patient partners came around and like well, no, that will not do us any good. This one particular thing was based on diet and they wanted to do a strict diet right after surgery and during treatment. No, first of all, you're not going to get a patient who potentially might not be able to eat to follow a strict diet or while you're doing treatment, the last thing that you want to do is restrict what you're eating. Because you know what, if I want to eat a chocolate bar, I'm eating a chocolate bar and there's nothing you're going to say about it. So, but it was something that they hadn't quite thought about because they've never gone through it. 

00:10:21 Carly 

Right. 

00:10:21 Karen 

So they completely changed their tune. And, they score, in the end, they changed their scores to less because they saw our value in that project. And the same holds true in the other way, where the team has scored it less based on the research, but the patients saw more value in it, so they ended up scoring it a little bit more. So it's been really fantastic to see how our voice is coming across. And I'm also done a few, worked within a few projects, some that are just coming to publication, some that are actually just starting for trials. We work with the team in developing the information guides, the consent forms. 

00:11:27 Carly 

It's a lot of work. 

00:11:29 Karen 

It is, but it's so rewarding to be a part of it. 

00:11:35 Carly 

And I agree with that. And I was going to say like what you just mentioned earlier right now is that you said you wanted to get this out to people from someone who'd been through it. And I think ovarian cancer is really on the rise, but yet it's not spoken about enough. So when people like other patients start to advocate, it brings it to the table more and we see more change. So I applaud you for doing that. 

00:11:59 Karen 

Thank you. 

00:12:00 Sabrina 

And it seems like your involvement has been really meaningful both to the researchers, but also it seems like to yourself. Do you have any other examples that you want to share of how your input has been impactful to research? 

00:12:14 Karen 

So one of the things that we're doing right now, we're really investing in pragmatic clinical trials, where it's actually patient-centered trials and patient focused. So what we're trying to do...I would hate, I hate to use the word mess around with, but ... we're taking the patients, and so everybody at the tables already knows the science behind chemo, where the dosages that are provided are the maximum dosage allowable to treat a disease. But sometimes the dosages can be reduced and still be as effective. So some of the things that we're trying to do is determine, does the patient actually need to have this, or do they even want to have this much of a dosage? So we're actually doing trials now to focus on and having the patients answer those questions instead of the doctors and the researchers. 

00:13:28 Sabrina 

Wow, that's super interesting. 

00:13:29 Karen 

Yes. 

00:13:30 Carly 

Very cool. And like, did your family get involved with the projects that you're doing? Because I'm thinking from my perspective as a two-time cancer survivor, like my family was always supporting me, but they weren't involved in advocacy or projects. So has your family jumped on the wagon with you and helped make a difference? 

00:13:48 Karen 

They have not other than the support part. I love them to death and they are behind me 100% in the support, as is my job because I'm even taking time off of my job to do this podcast. I have a few people who come to all of the engagements that I speak at and after I'm working on these projects, I go to them and they're like my sounding board and they love hearing me talk about it because they're seeing excitement in my face and my voice. But other than that, they try to stay away because I'll probably talk their ears off too much if they knew too much about it. 

00:14:37 Carly 

And it can be a rabbit hole. Like, I don't think I've ever talked about cancer so much in my life and everybody heard about it, right? So sometimes everybody needs a break, including ourselves. 

00:14:46 Karen 

Yes, I do have to agree with that, unfortunately. And eventually I might take a break, but not yet. 

00:14:52 Carly 

Yeah, go girl. 

00:14:55 Karen 

I try my best. 

00:14:58 Sabrina 

So obviously, like, engagement, as you just mentioned, isn't without its challenges, you can certainly experience burnout or there's certainly learning barriers. Have you faced any challenges or barriers since you've been engaged as a patient partner? Is there anything that's helped you overcome them that other patient partners might be able to learn from? 

00:15:18 Karen 

So what are the things that with Ovarian Cancer Canada and the patient partners we were actually, it was mandated before we became a part of the program that we actually took a science of cancer course, which was, I don't, I can't quite remember who it's from, but it's, I think it's Canadian Cancer Survivors Network. So it's a whole science of cancer; it's 10 modules where you actually learn from the beginning, like the cell division, the types of cancers, the type of research. So it actually gives you a great background to start because reading some of these projects are completely overwhelming and they have so many acronyms and your brain is just going to explode into a million pieces. But by starting with that science of cancer, you actually get a good base to start. And then reading through these proposals, you don't get as overwhelmed. There's still a lot of acronyms that are a little confusing, and sometimes following them along is quite difficult. But I have found that I just read them very quickly first, and then I start with the lay summaries of the abstracts that we get and then delve deeper into the other meat of the documents. And I find that that has really helped me. But I also found that just talking to people who are in the community, like the ovarian with the patient partners and GCIP. Having them as go-to's for help. Like if I don't understand something, I could go there, a little bit of support, you can go to one of the organizers or the leads of the programs and say, can you just give me a little bit of assistance on this so that I can wrap my head around it? Or if you needed an extension of a timeline, then they would go and advocate to the researcher or the project to give you a little bit more time in case your brain is about to explode because you've got too much going on. So I find that having those groups as your backup and support is that very valuable. And they also advocate for you with these, with the researchers so that they get full value of your voice. 

00:18:20 Carly 

Yeah. No, that's so true. And I mean, you've already said a couple times now about the right people supporting you and the right people listening to you. Like, there's challenges when one is trying to bring attention to whatever, not just cancer, just anything in general. You know, people say no, or people say maybe and they let you down, but you want to make a difference. And so how have you kind of dealt with some of those roadblocks, maybe you haven't had any, I'm unsure. But you know, when you you've had a vision of what you wanted to accomplish, you've asked and have you ever had to kind of rethink it and revamp it? And like, how did you kind of come across all that? 

00:18:58 Karen 

Luckily, I haven't really had that roadblock as of yet. Many of the issues that we've had, or I've dealt with in projects it's more of collaborations. So there's usually a lot more talking involved with all the participants so that everybody gets an understanding of each other's vision and voice so that we can come together and find the appropriate wording or terminologies or approach on how to proceed further. So, so far, everything has really been a true collaboration with everybody that we've been working with, and it's been really good and really promising. So we haven't, I, I personally haven't felt any roadblocks as of yet, and I hope I never do. 

00:19:55 Sabrina 

Yeah, that's fantastic. On the mention of this whole collaboration, we often say that patient-oriented research is a co-creation and a partnership where researchers and the patient partners should have shared power over decisions. What does this whole idea of co-creation mean to you, and have you really experienced that yet? 

00:20:17 Karen 

We have, actually. And like I was saying with the grant review proposals, because we get equal voice in who's doing the research. So because, like, yes, the scientists know more and can express their opinions in a vastly different way. But then when it comes down to it, because it's the patients who actually have to live with the consequences of those decisions, we found that having that equal voice has actually been are really good and listening to the researchers as they're listening to us commenting on the stuff that we're saying is also, it's very rewarding. And then as well with these pragmatic clinical trials that we're now start really trying to work with because it's patient centered and it's the patient voice that's leading the charge for these research projects. It's vitally important and vitally or extremely rewarding because you get to help in the design of the program. And it's been very fun and interesting to learn all about these different types of trials. 

00:21:49 Sabrina 

That's awesome. That's great to hear that. It's so rewarding for you. And I know it's rewarding for the researchers. So that's fantastic.  

00:21:58 Carly 

And the research can't be done without the patient, right? Like this is the whole collaboration piece. And so if somebody listening wants to do, you know, advocacy and work like you're doing, how would they go about getting involved? Is there, let's just talk ovarian specific, like where should they reach out? 

00:22:16 Karen 

Ovarian Cancer Canada would be the first spot that I would reach out that for ovarian specific because we are the only national charity that deals exclusively with ovarian cancer. So it's there's the whole website is designed specifically for so that you can get as much information as you need, both on research resources, tools. New projects that are coming up that are available for to be participants in. So you can actually go there and find all of the information that you want. And if you did want to get involved in the advocacy, then you can reach out to the programs through that and work with advocacy or research or however you want to get involved. There are ways to do that. And then if you extend it through all gynecological cancers, through GCI, through PFAC, getting involved there, and then you can be a part of different types of community projects through that as well. And that's how actually I became involved with PFAC through Ovarian Cancer Canada because we were both sort of working on a project together. So I was brought in as a patient partner through Ovarian Cancer Canada. But then they sort of like said, why don't you come and do us to? 

00:23:51 Carly 

You got knowledge. We want you. We want you to help. And I think I can only really speak for myself, but when I first fundraised money for cancer, I just knew it was just going to like a big in the sky cancer place. So when we can do research or fundraising, whatever the case, directed to the cancer that you had and that you're working towards to help find more cures and treatments for it, it's a pretty powerful thing. 

00:24:17 Karen 

It absolutely is. 

00:24:19 Carly 

Yeah, absolutely. 

00:24:20 Karen 

I'm going to give a little plug here. This episode is going to happen after this event, but even this weekend, I am supporting Dr. Alicia Tone from Ovarian Cancer Canada she's doing a Run for Her. It's a 31 kilometer trail challenge that she started a few years ago. She's doing it annually. I'm going to lend my face and my voice to the participants to encourage them to run that 31 kilometers and to help raise more money for Ovarian Cancer Canada so that they can continue the research. 

00:24:57 Carly 

That's amazing. 

00:24:58 Karen 

It's another, one of the other benefits of being a patient advocate is you get to talk to so many people and really fill them with energy and excitement. 

00:25:11 Sabrina 

Yeah, it sounds like you've had a lot of different rewarding experiences. Do you think that you could pick one that's like, or one thing that since you've become a patient partner that's been the most meaningful or the most rewarding for you? 

00:25:25 Karen 

I was invited to go to a research lab while they were presenting to the Terry Fox Foundation for grant money. And it was four different projects that are, they were collaborating for one common goal. And I was invited to review the work and speak on behalf of patients. And I spoke and I did a great job speaking. And then I found out the people that I was speaking to were like the heads of Tokyo Research and the UK like research. And I was like, when I found that out, I was like, I'm glad I didn't find out any of that before I started to speak. But the chair of this committee came up to me afterwards and he shook my hand and just wanted to thank me for being involved in putting my voice out there and it was, that was probably, like I was so excited after that conversation with him. And especially after I found out who he was and it was like, oh. 

00:26:44 Sabrina 

So you're having worldwide impact is what we're hearing. 

00:26:47 Karen 

Yes, yes. 

00:26:49 Sabrina 

That's super impressive. That's a great example of a very rewarding experience. 

00:26:54 Karen 

Yes, it really was. They did get the funding, so it must have had a little bit of an impact. 

00:27:02 Carly 

Because what year were you originally diagnosed again? 

00:27:06 Karen 

2019. 

00:27:07 Carly 

2019. And did they give you a stage? 

00:27:09 Karen 

Stage 3C endometrioid. 

00:27:12 Carly 

Okay. Yeah. And that's aggressive, right? So the fact that you got through all that treatment, you're here today, you're making a difference. Basically, we need to clone you. That's basically what we need to do because we need more of you out there, right? 

00:27:26 Karen 

Well, I am certainly trying. I am actually currently awaiting my surgery date for new surgery for new spots that have to be come out. 

00:27:37 Carly 

Oh, ow. In the ovaries again. 

00:27:40 Karen 

Well, no, because I don't have ovaries anymore. 

00:27:41 Carly 

Okay. That was my next question. 

00:27:44 Karen 

Yeah. No, I had a complete total hysterectomy. So this spot, so one of my original tumors was actually attached to part of my colon. So they had to detach the tumor. But this new activity seems to be where the original tumor was attached. So it's coming out as well as a lymph node. Because a lymph node also has activity now. 

00:28:13 Carly 

I hate cancer so much. 

00:28:17 Karen 

Me too. And one of my key takeaways for my all is I don't want to lose anybody else because I lost too many people in the last two years and I don't want to do it anymore. 

00:28:31 Carly 

I hope you know that we're behind you to support you. All those people you've made an impact with, you know, whatever you need. 

00:28:41 Karen 

100% I do, which is partly why I keep doing this. Because there are people who don't have the same type of voice as I do or who don't have the energy or the to do this type of work. So, and I do because I want to, I don't want this ever again. I don't want this for anybody. I want early detection. I want better treatments. I want no ovarian cancer ever in this world. 

00:29:22 Sabrina 

I think that there certainly will be some people that will hear this episode and possibly learn about patient-oriented research for the first time and possibly learn about how they might be involved. So you might be a motivational speaker to many other patients who have the opportunity to listen to your experience and your story. 

00:29:40 Karen 

Well, I would be okay with that too. Because the more advocates, the better. 

00:29:46 Carly 

And I think like the general consensus is once you “beat cancer” in quotations, you just move on with your life. And I don't think a lot of people realize that there are these research projects out there, these partnerships that are needed to help the next you. And you are making such an impact helping the next you because we need, like you said, to see advances in medical treatment, procedures, research, you name it. So from the bottom of my heart, and I just want to thank you for all that you've done. 

00:30:18 Sabrina 

I think we have one last question here, and I think you've touched on it for sure already, but maybe to sum up the episode, would you mind sharing us what you think your personal mission is, what's driving your involvement in all of this research, and what keeps you coming back to the table? 

00:30:36 Karen 

My personal mission is to better outcomes, provide better outcomes for women. No woman should have to be blindsided by a disease, like, especially like ovarian cancer, because there is no good way to like, because there's no early detection. So when you do get diagnosed, it's usually by accident or because it has progressed to the point where your symptoms are so severe that you have to get hospitalized or you've discovered that you, or you found you symptomatic and you bring it to a doctor and they, ah, don't worry about it. You're just going through menopause or it's just this, it's just that. I want that to stop happening. I want women to have a good strong background in or not background, a back bone in which to support their health so that they can get that early detection or have a detection tool that is standard of care for women, much like the cervical screenings are and mammograms have something for women so that they can have get checked for gynecological cancers like ovarian that is harder to detect. So that would be my goal is to have that early detection so that they can get the treatments faster or get the solutions faster and then give better treatments that are more effective. Because what works for me doesn't work for my friend who's got low grade serous or doesn't work for another friend who's got granuloid cell tumors or mucinous because there's so many different types of ovarian cancer. So treatments that work for everybody and get them done sooner. 

00:32:46 Carly 

Absolutely. 

00:32:46 Karen 

And with at least possible side effects. 

00:32:49 Carly 

For sure. And I think with that too, just taking the shame for women to think like, you go to the doctor and you almost feel shame when you're getting checked out and then you're asking, oh, I feel discomfort or, oh, can you, all these things, we feel so like hidden. We shouldn't have to feel hidden when it comes to our female health and what we need to keep us going and healthy. 

00:33:12 Karen 

Yes. So my friend, Dr. Tone from ovarian cancer care, she gets so enraged whenever she hears of a delayed diagnosis because somebody wasn't taken seriously. So she uses that rage to put into research and we take her rage and it fuels us to find that better research. 

00:33:39 Sabrina 

But hopefully we don't always have to be running on rage, but it's certainly motivating some good research coming out of ovarian cancer Canada. 

00:33:45 Karen 

Isn't it? But yes, the rage will unfortunately, it does affect mental health for all of us. So rage is definitely not the good motivator, but if it's a start, then we'll work on that. 

00:34:05 Carly 

Well, I think I wanted to just thank you for taking the time to be here. Right, Sabrina? This is pretty powerful. 

00:34:12 Sabrina 

Yeah, this has been amazing. I think so many people are going to learn from your life and your experience and how they can continue to get involved in research and how impactful it can really be. 

00:34:24 Karen 

I certainly hope that both patient partners and research, as well as PFAC, get some new advocates out of it. 

00:34:32 Sabrina 

That would be fantastic. 

00:34:34 Carly 

It's well deserved for both. 

00:34:37 Sabrina 

Well, thank you so much for coming on the podcast. 

00:34:40 Carly 

Absolutely, my pleasure. 

00:34:44 Outro 

Thanks for joining us on the Gosh podcast to learn more about the Gynecologic Cancer initiative and our podcast. Make sure to check out our website at guiding cancer initiative.ca.