On September 24th, 2021 the GCI hosted a launch event for Season 2 of the GOSH Podcast: Press Play on Patient Perspectives. Patient partners Nicole Keay, Nancy Cleveland, and Debra Walker shared their reflections on the GOSH Podcast, as well as their own stories and engagement with gynecologic cancer research.
We are excited to share their meaningful and insightful conversations as a bonus episode for this podcast. Press Play to hear more!
You can also read more about the event on the blog on our website.
For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at firstname.lastname@example.org
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Thanks for listening to the GOSH podcast. Gosh stands for the gynecological oncology Sharing Hub, an open space for real and evidence based discussions on gynecological cancers. We'll share the stories of guiding cancer patients and survivors, and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecological cancers. Our podcast is produced and recorded on the traditional unceded territories of the Musquem, Squamish, and Tsleil-Waututh Nations.
It is produced by the Gynecological Cancer Initiative, a province wide initiative in British Columbia, with the mission to accelerate transformative research and translational practice on the prevention, detection, treatment and survivorship of gynecological cancers.
Hi, I'm Nicole Keay and I'm Stephanie Lam, and you're listening to the GOSH podcast.
Hi everyone my name is Stephanie, welcome back to the GOSH podcast and welcome to this bonus episode that we were able to put together for you all.
This is such an exciting episode for us to produce, and what you're about to hear is an amazingly insightful conversation that I was able to host at our GOSH Podcast Season 2 launch event called Press Play on patient perspectives. We invited some of our previous podcast guests. And just had a bit of a conversation about the GOSH podcast, the platform that was created, knowledge translation, storytelling and patient engagement in gyne cancer research.
So I really hope that you folks will enjoy this conversation and really learn some of the important insights that our patient partners are bringing to us in the area of gynecological Cancer Research in British Columbia.
This event was such an amazing reminder of the importance of patient engagement and the amazing insights that patients continue to bring to our work, I really hope that this episode will inspire you all to get involved and really prioritize patient oriented research as an important part of your research program.
Hope you all enjoy this amazing conversation.
So I just want to introduce the three individuals that we have on the screen here. I've had the great privilege to work with these individuals over the last couple of years and I'm really excited to chat more with them and to share some of the work that we've been doing.
So we have Nicole K Nicole is an experienced communications professional who's been working in healthcare, nonprofit and telecommunications. She's also a patient partner with the GCI and Co Hosts of the Gosh podcast. In her early 30s, Nicole was diagnosed with cervical cancer and underwent intense treatment, including surgery, radiation and chemotherapy, resulting in the loss of her fertility. So Nicole now uses her experiences to help guide support and be a really important voice for patients who have been diagnosed with Gynecological cancers.
We also have Deborah Walker who is joining us today. She is an incredibly strong patient advocate. As someone who has gone through both cervical and ovarian cancer, and she is very active in the patient engagement space, she is part of both the GCI Patient Family Advisory Council as well as our clinical trials group among many other provincial and national groups. She has an immense interest in a whole bunch of different areas, including advanced care planning, immunotherapy research, clinical trials, palliative care, and is really interested in integrating and looking at these across all of the different irrespective of cancer type. She was previously a human resources consultant who specializes in Psycho Psychological health and Wellness in the workplace and she is very interested in scientific research as it relates to psychosocial health of patients and caregivers.
We're also joined by Nancy. Nancy Cleveland has lived in Vancouver for her entire life and is married and the mom to two beautiful adult children. In her professional life she spent 35 years as a teacher at the Vancouver School board. In 2019, Nancy was diagnosed with stage 3C primary peritoneal serous ovarian cancer after going through a routine laparoscopic surgery for a gallstone. So her, her story has definitely had a lot of ups and downs, but she continues to have a lot of hope for gynecological cancer patients and survivors, and Nancy has had some great experiences with clinical drug trials and research that continue to improve outcomes for patients across BC. So thank you to you 3 ladies for joining us today, I'm really excited to learn more about your perspective at our event today.
To start us off we will just start by addressing one of the questions that had been previously submitted before the event and that is, you know, as patients and survivors, what about this particular platform Gosh podcast excites you? Maybe we'll start off with Nicole as the Co host of the podcast.
I think one of the things that really excites me about the podcast is the capabilities that it provides to patients and their families as well. As you know, the research and medical communities each user has a real unique interest and reason for tuning into our episodes, and it has the power to act as you know, almost a bridge to sharing knowledge between groups of individuals who would not otherwise have the opportunity to share or connect, or have you know little opportunities for that so.
I think that's the real power of using a tool you know, such as a podcast. For that you know, knowledge sharing and storytelling, and it really creates a, you know a a powerful experience for both those on the patient side as well as those in the research community.
Absolutely, I think as someone who is, in the research community I I am always hearing from people I work with about how impactful it is just to hear patient stories because sometimes researchers don't have that opportunity to connect with patients in that way.
So you're absolutely right that the platform is really useful for bridging those two groups together, and we'll move over to Debra now, what about this platform excites you?
One of the things that excites me a lot is the fact that we don't necessarily work with borders, although this is a BC cancer initiative, it has. I've got people that have been listening in Asia and in Europe and are getting the benefit of it. I'm blessed to be living in BC and have had the most amazing cancer. From from a region of the country that seems to be excelling in finding or discovering new ways of doing things specifically as it relates to cancer.
So I like being able to shout out all the things that are happening here in BC to other parts of the world. The other thing that excites me is. Even within our own borders, I come from small communities in northern Alberta where you don't get necessarily to connect with the community the same way that you would be able to by listening to this podcast. And that's the same thing as we're working. One of the benefits that has come about as a result of the pandemic is being able to do more things virtual?
And so even in our own province, and it's a beautiful province. But it's huge and there's people spread all over, and those cancer doesn't just strike people in urban areas, and so it's an opportunity to get are the things that are happening on the on the research front, hope. We're spreading hope throughout the world with this particular podcast, and that excites the heck out of me.
Yeah, I love that it's so important and as we look at the analytics of our podcasts we are really getting that international reach and you bring such a good point about how it's not even just about other countries. Even within our own province of BC, there's still so much work that we need to do in order to increase accessibility to this type of information and make sure we're reaching all communities across the province who are impacted by cancer.
So thank you, Deborah. Nancy, how about you? What excites you about this platform?
Thanks Stephanie and thanks, Deborah for bringing up the hope because I think that's one thing that these podcasts really do very, very well. They give us as survivors, real hope and and really honest stories and for me it's just great to be having relevant, reliable local sources of information. I think Nicole mentioned too as she was had going through her cancer battle it's very easy to go onto Doctor Google and try and find different things and I never knew what was right and what was wrong and I was having different people telling me this and that and the other thing. I really think having a reliable source like the GOSH Podcasts and having the researchers and everything that they do to be accessible for us as patients, I think it's just amazing.
Thanks, Nancy, I think that's really a really important part of this. This kind of creation of this platform is bringing all of the evidence based information into the hands of the public and making sure that it's accessible and sometimes it's about having a conversation with people. It's not so much about always reading the research articles or reading the scientific data. It's about what is the endpoint. What does that, what does that mean for patients and survivors? And I think that is an absolutely important part of this.
I I want to sort of bring up something else too. If you don't mind Stephanie, is that you just mentioned it?
We're we're reading articles. We're reading this where we're trying to absorb it, but we learn things in different ways and having an oral platform allows people who who that's the way they process information. Or or as Nicole mentioned, you can get it in ways that you don't have to be sitting down formally in either in front of someone or in front of a machine. You can do it on the phone you could do it running, you can do it laying down you can do it pretty much any activity that you wanna do.
You can listen to a podcast and so it allows people a different modality to be able to get the information than just reading and, and quite often research documents are are harder to read when you relate. And so getting to hear the story that goes along with the research that's really important.
Yeah, yeah no, that's really right. And as a visual and audio learner myself, I absolutely agree with your point, Deborah. It is sometimes much easier just to listen and to chat with people about the information they are trying to teach others. So thank you to all three of you for answering that great first question.
I am seeing a note here in the chat.
Thanks Amy for sending this question in, you know we do have some analytics on our reach in terms of age range and interestingly enough we have a pretty broad range.
We're reaching people who are from 18 all the way to 65 - 70 years old. And but with that being said.
We are reaching more of the younger demographic actually, which is quite surprising when we looked at the analytics ourselves because gynecological cancers often impacts those who are a little older. So it was really interesting for us to see that we were reaching people who were younger and it's just supposed to show that this type of platform can be really accessible to all sorts of people, and you know, young people will also really benefit from learning this type of information and being aware of things like prevention strategies, detection strategies and just hearing these stories. So I think it is really important that this is. This podcast is also reaching a very wide range of ages as well.
Nicole, do you have anything that you want to add on that front?
No, I think you summed it up pretty good.
OK, so this is one of my favorite questins, so all three of you have been on the podcast have shared your stories with us and and in a whole bunch of other forums, you guys aren't just engaged in this particular podcast, you guys do so much outside of in the patient engagement space, always sharing your story and offering that as a resource for so many people.
So what role do you think storytelling has on your cancer journey?
How has storytelling and being able to Share your story impacted you and the end your relationship with your cancer journey?
And maybe I'll start this question off with Deborah.
Storytelling is important for a number of different reasons for me. The first one being you get it off your chest yourself and you get to hear it out loud and and you you replay that loop in your head over and over and over again. And sometimes getting a chance to say it out loud.To to pretty much an audience that you can't see, so it's usually just you and the interviewer that that you're having this intimate conversation.
But at the same time, you know that there are people out there that are that are listening. So that's an important part of storytelling.
I also go back to Indigenous culture, one of the ways that we pass along storytelling or pass along our stories or or who we are as a culture is through our stories. And until we and if we don't share those through storytelling, we all think that we're an isolated little column that's all by ourselves and everything that we're experiencing is unique and special to us.
And sometimes that's good, and sometimes that's bad, but it allows you to see that even within a cancer diagnosis or gynecological cancer diagnosis, there are a million stories inside there that everybody is unique and everybody, even even my sister, is on on this meeting today and she and I have both gone through cancer very similar timeframes, both a gynecological cancer. But each had different experiences, so I think storytelling is one way that we get to hear about those differneces.
The other thing that I really believe in is design thinking, and if researchers are going to be able to design over or to look at research, they have to be able to integrate the stories of the people that they're doing the research for. And until you hear that, yeah it can be easy or as a researcher to think of it purely in the in the science realm as opposed to the anthropological realm as well. They have to both be included in research and and storytelling is one of the ways that we can communicate and when you talked about having a different session that's going to be in another language. Storytelling is a way that we can communicate across languages across culture, across demographic differences, gender differences, and so storytelling to me is fundamental. If we lose our ability to tell stories, uhm, we've sort of lost as a culture in my opinion.
Thank you Debra for sharing that.
That's such an important part and I'm as as someone who has been able to listen to all three of your stories, I am very grateful to those who will continue and will always be keen to share their stories with us because it is a really vital part to all of the work that we do.
Nancy, maybe I'll go over to you. And if you could share the role that storytelling has had on you and your journey.
Well, storytelling really began right at the beginning of my cancer journey, and when I think about storytelling, it's that and lived experiences are the same thing for me and so I had a very good friend from high school that ended up having ovarian cancer 10 years earlier and so she having her and having her story was so helpful for me knowing what was going to be ahead because when you hear that you have cancer and it was the last thing that I was ever thinking about, I had been looking into this cancer for over 8 months. And to find it from a gallbladder surgery was kind of crazy, but I've learned from her and some other people that many of us find that. I mean, where this cancer is found at a late stage and it's often proving late surgery, so that was the same for Barb, she had found it same stage 3C same Way through surgery and so just having that to fall back on and to be able to ask her questions And and navigate my cancer that way was just so, so helpful.
The other thing that I really think about is, you know if you it, it creates a sister hood of sorts. You know it or it's it becomes family, you know and I just have found that with the podcast so much and for the GCI, you know you just become like family. And I think stories have a way of doing that. I think we can identify with and understand the process you know of cancers so much better and and I really think it fosters hope as well and it can alleviate such fear of the unknown. And I think that's so much with this cancer there's so much fear of the unknown like what's next and and all of that service stuff.
So I think all stories are individual, but collectively they're so valuable in in multiple ways.
Thank you so much, Nancy, and I think a lot about the work that you continue to do now walking alongside other survivors, other patients and and connecting with people over those stories and the lived experiences that you all have.
So thank you so much for sharing that Nicole I'll pass it over to you now if you would want to share a little bit about how this has impacted your your own journey.
Huh, yeah, I think you know probably similar to what Deborah and Nancy shared.
Uhm, you know for me I think it's helped me really honor the experience that I went through and find acceptance for that journey. And you know, helped me to really establish my voice and speak up and speak out, and that wasn't something that I was always able to do or was really keen to do.
And so being able to express myself that has really helped the healing process and you know it's led to you know, many great connections. Like Nancy mentioned it is, you know a sister Hood or family like you know, I've really bonded with people over, you know, shared experiences or even just, you know, having gone through this journey, being able to talk about things that you know others in my life, maybe I wouldn't be able to have the same type of honest or real conversation with so it's really it's really helped with that healing aspect, providing validation and building community, and that's been really personally powerful.
But then you know throughout being connected with the GCI and the Gosh podcast, and different things, I've taken part in, you know, really understanding that my voice can have an impact for the future of cancer care it's been really important as well and like as Deborah mentioned, you know we all have unique experiences and we have unique stories and I think geing able to share these stories really humanizes the disease and the experience for those who work in the research space.
And I think that's really, really important. And in the beginning, I didn't really understand that my voice had power or carried any weight, and I've learned that through being, you know, connected with the GCI, and I think that's really important.
Thank you so much for sharing that Nicole and you're absolutely right that there's so much space for patients and survivors and people in the public to be involved in research and to share their stories to help inform research and be part of that process. It is ultimately really important.
Deborah I, I'm begging back to the podcast episode that we recorded with you where you shared that the most important stakeholder in Healthcare is the patients so they are absolutely very essential and needed in these types of conversations.
So I'm just going to pop over to the slido. I'm seeing a couple questions being popped in and I will give the three panelists, a bit of a break and answer one of the questions about how we are reaching out and finding our patient partners.
So I'll start just by sharing a little bit about the process of connecting with patient partners, and it would also be really interesting to kind of go back down them relaying and hear how the three of you have been connected to being patient partners.
So as part of the Gynecological cancer initiative, we host a patient Family Advisory Council that was formed somewhere in 2019 and we did a whole range of different strategies to connect and try to find patient partners. So we're very lucky that BC cancer hosts an amazing patient experience program, where we do we where we did do outreach and they were able to connect us with a few patient partners who were very keen to work in this area.
But alongside of that we also found some patient partners over social media and there are a ton of people talking about their experience sharing their experience on social media. And that is such a great platform to find those connections. We've also been able to connect with a few patient partners in in our clinics at BC Cancer.
So as part of research and as part of an ongoing research that has been happening at BC cancer, we were able to develop some of those connections in that way, and I think I'll just say that you know, finding and reaching out to patient partners is one really important step, but it was really just the first step of creating a relationship and to working with patient partners moving forward, so I think by creating that first step and if if groups out there such as the BC Cancer Patient Experience program or the support unit have been really great in making that first step really accessible and easy so that you can focus on creating a relationship with your patient partners and building that working relationship to make sure that the work that you and other researchers do are really impactful, so yeah, that's a little bit about how we find our patient partners.
Let's go down memory lane a little Nancy, how, how do we connect it's it's been a while.
It has been a while Stephanie.
I think I started going down the fundraising trail and was talking to somebody that was involved with fundraising and she connected me with you. And so we had chatted, and then you invited me to the survivorship conference, which was just life changing. And I remember I had just finished my chemo 2 weeks earlier, so I couldn't stay for the whole thing. But it was just it was so amazing to be able to have that information. And to have and to see that there was that kind of interest and and see the research moving forward, because I think from what I had really started to find out is that previously there wasn't a whole lot of information on gyne cancers or anything really anything moving forward where the survivorship conference was so informative and it really was excellent.
Yeah, I, I think it's really important that you mentioned that Nancy that sometimes when we connect with patients about doing patient engagement and doing this work it it can be a very new and daunting space for them, so I think it was really important that we were able to participate in the survivorship summit in that way, and really just kind of sit there and see and see what this is all about and to see how you connect and then re engaging in the conversation about whether or not you are interested or have the capacity or have the interest in engaging with us in that way so it is definitely really it's still really an important part of this patient engagement process just to invite people in, bring them to our events, share some of the work that we've been doing, and then always having that continuous dialogue.
Nicole, we've gone back and forth about this so several times in the last couple weeks.
Yeah, I don't know what the initial connection point was. Somehow I got connected to come to a tour of the lab at BC Cancer Foundation and then from there you invited me to the survivorship summit and, and that's where we connected a bit more and then decided we'd connect further about the podcast so, but I still just don't know where that initial I I think it was through Doctor Stewart.
Uhm, most likely, but yeah, it's still a bit of a mystery.
Yes, it's it's been a while yeah.
So how about you Deb?
I think the first was the patient and Family Advisory Committee and that was a posting that was done through the patient Family Partners Group. And So what we do is every month we have a list of opportunities for patients that come out in our newsletter. And I picked this one because of course a gynecological cancer is an important part, not just for me but for my family and then from there I think my interest in clinical trials probably took me to the uh GCI clinical trials group.
I think that that's how. At at the same time, one of the one of the things that I had talked about earlier is how it's important for research researchers to get to know the patients. But I think it's also equally important for patients to be vested the research and Nicole mentioned something that I know I've brought up many times, but I'm so impressed with the the tour that you arranged for us to go into the lab and to be able to see it because it goes back to your previous question on storytelling.
Unless I know the story behind your research, it's really going to be hard for me to get behind it and to understand it, but and and then, but going through that lab and going through and seeing the variety of things that were being done it goes back to Nancy's word on hope, I got so much hope by going through and connecting with the researchers that it really solidified my connection to both that the patient and Family Advisory Committee as well as the the clinical Trials Group. So I think that that's how we got together.
But it certainly was solidified by by the work that you've done with both of those groups, and including that that tour of that lab that was mind boggling and changing for me.
That's amazing, I I remembered afterwards when you mentioned looking at some of the slides of the tissues that the researchers were working on and you know you were mentioning that you know you've been part of the gynecological cancer tissue bank. And like you know how that has been you know, really seeing the research that is happening has been really important as well.
I'm going to move over to a question that was submitted and this was a pretty interesting question that I think would be a really great discussion.
One of the questions that had came up that folks wanted you all to address is what is the most rewarding experience about being a patient partner?
Uhm, maybe I'll go over to Nancy, if you want to start us off.
Again, I think it's really just being part of a community and yeah, and just the fact of having a well you learned so much. Absolutely like I think that's number one that I've really found is that I'm learning so much as we go. And just again, here comes this word again, but that there's hope, you know that we even with the different projects that we've been on, I'm seeing movement I'm seeing, uh, success in often cancers that are really not great and don't have that much of a success rate.
So I think just being with people like you guys and and yeah, just yeah, your leadership. It's just it's amazing and it really to be able to be working with you Stephanie, I mean you you have been a champion of this right from the start and I remember thinking about this at the survivorship thing and and now to see where it is today. It's just so exciting that you think about from two years from now, what is it gonna look like?
Stephanie thank you on behalf of so many of us for all that you've done because that's been a huge highlight is working with you. And Nicole, you too.
Thank thank you so much Nancy. It makes it warms my heart to hear you say that, but I think, uh, a part of this is, you know, this is the whole essence of what the GCI is hoping to do it's about bringing people together to work towards the common cause and and doctor Gavin Stewart talks a lot about this and the episodes that we've done with him that by working together, we'll actually be able to start making it continue making a difference in these types of cancers.
Nicole, I'll go to you.
What has been the most impactful part of being a patient partner.
Uh my I would say there's probably two things like the connection piece is huge for me. I think there's been lots of opportunities connecting with you Stephanie with connecting other people in the GCI, but as well as the other patient partners, you know so those relationships with meeting Nancy and meeting Deborah and and some of the other ones and hearing their stories and having you know, just really meaningful connection points has been really, really impactful and then just the opportunities that the GCI has provided to to work on and be a part of and, and you know when we interviewed Doctor Stewart for the podcast, and you know, hearing those achievements and how much has been accomplished, and to know that you play a really small piece of that is really important and really really rewarding and and I would say has a huge impact.
Thank you so much, Nicole. Deborah, I'll bring it over to you.
20 years ago. 25 years ago I was initially diagnosed with cervical cancer and when I see how different the environment is today thanks to research thanks to understand understanding the patient, the human I'm I'm I'm very encouraged by what I've seen in the last 20 years and can't wait to see what happens in the next 20 years.
I was very fortunate prior to COVID to participate in the Canadian Cancer Research Conference in Ottawa, where I got to see over 650 abstracts from research projects that are going on all across this country, and if that doesn't make you feel hopeful, I don't know what will.
But on October the 1st, the first we get a presentation by a Doctor who's proposing a clinical trial using a different protocol for ovarian cancer, and I'm so excited to be alive to be able to watch that kind of a presentation and to know that there's people like the researchers that we're showcasing over the next few months in particular that are doing some pretty pretty fantastic and amazing things.
And so just to be a part of that even on the periphery of it and having my little voice, like Nicole said, occasionally taking a a role in that is really exciting to me and and I can't wait to see what's coming next because there's so many wonderful projects that are out there and being researched and and as a result of that, my life may is is being improved, but the people that are coming behind me that are going to be facing diagnosis, they're going to be getting a a completely different world, hopefully, so that's what excites me for sure.
Thank you so much to the three of you for sharing all of that it it it makes me feel so happy to hear that this work makes patients and their family feel hopeful about the future of cancer care and Cancer Research.
And I hope you all three of you and all of the other patient partners and family members on the line know how important your voice is in this work and thank you to all three of you for being such a big part of it.
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 gynecancerinitiative.ca.