Season 3 Episode 8: OCC Series - Empowering Ovarian Cancer Research through Innovation, Collaboration and Patient Involvement

Continuing our collaborative series with Ovarian Cancer Canada (OCC), we are pleased to welcome our next guest, Dr. Alicia Tone. In this episode, Dr. Tone shares the personal story of how her work with real women living with ovarian cancer continues to inspire and motivate her work. Dr. Tone elaborates on the critical role of patient involvement in advancing ovarian cancer research and how OCC ensures patient-centeredness in many areas of their work. She also outlines the resources available for scientists in the ovarian cancer field such as an extensive collaborative network of researchers, clinicians, trainees, and patients, funding opportunities, specimen bank and others. 

Bio: Dr. Alicia Tone is Scientific Advisor at Ovarian Cancer Canada. Dr. Tone has been in the ovarian cancer field for 20 years. Her history prior to joining Ovarian Cancer Canada includes a PhD at the University of Toronto in Ontario, post-doctorate training at BC Cancer, and 7 years as a Scientific Associate in the Division of Gynecologic Oncology at Princess Margaret Cancer Centre.   In 2020, Dr. Tone started her work with Ovarian Cancer Canada where she runs the national OvCAN research initiative and performs collaborative research to understand and improve care along the ovarian cancer continuum (prevention, diagnosis, treatment, supportive care).   

Ovarian Cancer Canada (OCC) Website: 

https://ovariancanada.org/ 

OCC email: 

info@ovariancanada.org 

Follow OCC on social media: 

https://www.instagram.com/ovariancancercanada/  

https://twitter.com/OvarianCanada 

https://www.facebook.com/OvarianCancerCanada/  

https://www.youtube.com/user/OvarianCancerCanada 

https://www.linkedin.com/company/ovarian-cancer-canada/  

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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 

Transcript

SPEAKERS  

Dr. Alicia Tone, Nicole  

SUMMARY KEYWORDS  

Ovarian Cancer Research, Gynecological cancers, Patient-oriented research, Oncology, Ovarian Cancer Canada, Resources for Researchers, GOSH podcast  

Intro: 

Thanks for listening to the GOSH podcast. GOSH stands for the Gynecologic Oncology Sharing Hub, an open space for real and evidence-based discussions on gynecologic cancers. We'll share the stories of gyne cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecologic cancers. 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 province-wide initiative in British Columbia with a mission to accelerate transformative research and translational practice on the prevention, detection, treatment, and survivorship of gynecologic cancers.  

Hi, I'm Nicole Keay, and I'm Stephanie Lam and you're listening to the GOSH, podcast.  

00:00:06 Nicole 

Welcome back to the Gosh podcast. My name is Nicole Keay, and I will be your host for this episode. Today we have with us Dr. Alicia Tone. 

Alicia is Scientific Advisor at Ovarian Cancer Canada and has been in the ovarian cancer field for 20 years. Her history prior to joining Ovarian Cancer Canada includes a PhD at the University of Toronto in Ontario, post-doctorate training at BC Cancer, and 7 years as a Scientific Associate in the Division of Gynecologic Oncology at Princess Margaret Cancer Centre.   In 2020, Dr. Tone started her work with Ovarian Cancer Canada where she runs the national OvCAN research initiative and performs collaborative research to understand and improve care along the ovarian cancer continuum (prevention, diagnosis, treatment, supportive care).   

Thank you for joining us today, Dr. Tone. 

00:01:04 Alicia 

Thank you so much for having me. 

00:01:06 Nicole 

All right, so I think we'll just jump right into the first question with you know what, what first got you interested in ovarian cancer? 

00:01:17 Alicia 

Well, so I've always been interested in science and medicine in general. But I would say that my original motivation for joining the field and really focusing on ovarian cancer was the I had a general desire to impact change in an area of Women's Health. I also had a desire to do something in cancer, because my grandfather had recently passed away from colon cancer. And on a more nerdy level, I was really excited by the fact that there was a lot more room for scientific discovery compared to something like breast cancer. I liked that it was kind of the underdog, and there was so much mystery for the biology side. I would say that over time it's become much more personal rather than scientific, especially since joining Ovarian Cancer Canada (OCC). 

00:02:08 Nicole 

OK. 

00:02:12 Alicia 

I've heard so many stories and now I've actually formed relationships with real women living with the disease, so that really continues to kind of light my fire to continue working even if it's difficult sometimes, which it is. And I really get a great sense of satisfaction from doing work that's meaningful and has the potential to impact lives of women and families in a real, tangible way, rather than sitting at a bench, for instance. 

00:02:48 Nicole 

Yeah, I love that. 

00:02:50 Nicole 

Can you tell us a little bit about your role as scientific advisor at Ovarian Cancer Canada? 

00:02:56 Alicia 

So I was trying to actually figure out how to explain it. Because as you know, there's always so many things you do with in a position. So I think I like to think of my role as driving and highlighting ovarian cancer research on a national level. And I do this by leveraging the knowledge that I've gained and the relationships I've built over the last 20 years. That's like the overall big picture, what I do. But on a day-to-day basis, I manage our national OVCAN Research initiative, which I know will speak about. And that includes working with our Governing Council, the patient partner team, as well as funding partners and the scientists themselves, I conduct patient informed research. 

Through OCC's own initiatives and in collaboration with many of the people that I've made relationships with over the years and the scientific and clinical community. They're really geared towards understanding and improving care across ovarian cancer continuum as you mention. I also work really closely with other OC team members to help highlight the most important information on the disease and research progress and kind of late breaking news, et cetera, that's relevant. So I actually collaborate with a diverse set of people within the OCC team, such as those in knowledge, mobilization, advocacy and government relations, survivorship programming, marketing and Communications fund development, finance. And it spans the whole spectrum and what I'm most excited about recently is that I have actually started to become directly involved in advocacy as well. So really pushing for change. I participated in a virtual day on the Hill in September talking about the need for continued funding and then also for instance, a lab tour in Halifax in February. So I do a lot of things. 

00:05:15 Nicole 

You wear many, many hats. 

00:05:17 Alicia 

Yes, there's many hats involved. 

00:05:20 Nicole 

Well, why don't we dive into the OVCAN initiative and if you could tell us a little bit about what it is and its purpose. 

00:05:30 Alicia 

Sure. So OVCAN is ovarian cancer Canada’s 5-year National Research initiative. So it spans from 2019-2024. And it's dedicated to identifying and testing new treatments for ovarian cancer and most importantly for all types of ovarian cancer. So not just those that are the most common high grade serious, but those less common types as well. Interestingly, and very importantly, the overall priority of the program. In consultation with scientific, clinical and patient communities, way back in 2015, there were then four years of advocacy to secure the funding so patients and clinicians all helped with that as well. Ultimately, the program is $14 million over the five years. There are a lot of different funding sources, the biggest one being Health Canada, The governments of Saskatchewan and Nova Scotia each contributed $1,000,000. We also have partnerships with Cancer Research society and eurocorps, which is a drug discovery company in Montreal. So I'd like to say, and we all like to say, that we're doing research differently. And it's true because. All the priorities are set together and then in order to allocate the funds to specific projects within those priorities, we use a combined approach of kind of strategic and collaborative decision making and then the standard competition that scientists are used to. And we make sure that patients are involved at every step in, including in the decision process. I won't go into all the details that we have funded 44 research projects actually across Canada and I'm super proud that we pay special attention to those less common types because they're really understudied. 

00:07:37 Nicole 

Oh wow, that's amazing. 

00:07:49 Alicia 

Patients with those types of ovarian cancer have fewer treatment options, and again, the patient partners are a huge part of it as well as we're already thinking ahead because this program ends on March 31st, 2024. So we already have come up with the next steps, how to go even bigger again with all of the larger community weighing in and working together. And that's really what we're at advocating advocating for, for all those things I was talking about, so just making sure we continue and build on the progress that we've made through this program. 

00:08:33 Nicole 

And is there anything just on a progress standpoint that you know would be really key or that you want to highlight that you've been really excited about? 

00:08:44 Alicia 

So I would say probably two things. So we have funded 6 clinical trials, all multi-site all incorporating translational studies on samples collected from patients, so you can really maximize what you learn about those things about the patients and the drugs that you're testing by doing that. And one of those includes the first low grade serious ovarian cancer trial in Canada, which we're very excited about. I would also say that. I would highlight that where we've built this pipeline, it's a very efficient pipeline. I called the pipeline of discovery because you have you know this set of like high fidelity research models for ovarian cancer that can be used as like the scientific toolbox to continue to make discoveries. And then we feed into preclinical studies and then clinical trials. So it's kind of a well oiled machine at this point. It's going to lead to more and more, you know, important discoveries that can be for new treatments with women. And in our previous episode, we talked to Donna Peppin, who's one of your patient partners, and she was mentioning her involvement, you know, in research. 

00:10:10 Nicole 

And she was talking about that was sort of a well oiled machine in terms of, you know, how they would support in the various initiatives that you have going on. And that sort of, I think start with like a rating or grading system and which sounded really, really excellent. But can you tell us a little bit more about the patient involvement in research and patient informed research that you you're implementing with OCC? 

00:10:38 Alicia 

So obviously our patient partners and research program is the biggest example. And then I might touch on some other research that we're doing as well kind of outside of that. So for the patient partners and research program, it's really to to both honor the fact that patients were so key and securing the funding and because we know that, you know, hearing the unique perspective of those with lived experience can really elevate the research and make it more relevant and important and increase the quality frankly. So this team that we have put together it's co-led by OCC staff, so myself and Dr. Jessica Lawson, she's also an alumni of David Huntsman's lab. Interestingly, as well as two patient co-leads. So Donna, you met and Shannon Kadar. 

00:11:32 Nicole 

OK. 

00:11:42 Alicia 

Basically, it's a group of individuals. Depending on the day, it's between 17 and 20 participants from across Canada really representing different experiences, so different types of ovarian cancer, age, sexuality, cultural backgrounds, geography. We also have a caregiver to offer a different perspective as well. So what my role is and what Jessica's role is, is to really prepare our patient partners and match them to appropriate research opportunities to really complement the work of the scientists that we're funding. They've been involved in tons of things. I don't know if you want me to list them. There's like, a million, but eventually they're involved. 

00:12:37 Nicole 

Maybe a few key ones. 

00:12:39 Alicia 

Key ones, they serve on grant review panels. So they're literally at the table and they have a vote just like every other reviewer. 

00:12:42 Nicole 

OK. 

00:12:49 Alicia 

They speak as panelists or speakers at a lot of our conferences. They also consult on patient education tools as well as scientific funding applications. 

So for instance the the big funding application to the government that we have kind of out in the ether right now. They were involved in, you know, critically reviewing, brainstorming. And just making sure it was as good as possible. And again they're standing beside us for the advocating at all levels of government for funding and equity of access. Yeah, it's just invaluable. And it's such an important and fulfilling part of what I do. 

I would also say that outside of that specific program. We also run our own patient informed research. So we did most notably that every women study the Canadian edition of the Upper Women study, that's actually a global study that we adapted to the Canadian context. It's really revealed some regional gaps as well as interesting gaps and differences based on different circumstances, such as patient age and things about clinical trial access and genetic testing, and how you actually go through that pathway to being diagnosed. So that has really informed our advocacy moving forward as well, so patients are at the center of literally everything of what we do. 

00:14:42 Nicole 

And that every woman study that was initiated by The World Health Organization. 

00:14:48 Alicia 

It was initiated by the World Ovarian Cancer Coalition(WOCC). 

00:14:51 Nicole 

OK, OK. 

00:14:53 Alicia 

So our former CEO has been involved in that organization for a long time and now our new CEO is as well. And so we were working really closely with the WOCC team to adapt it and report back and consult with the clinical community as well about what we found. 

00:15:20 Nicole 

So you mentioned that your patient partner is often present at, you know conferences and different speaking engagements and you know many of our GCI researchers and trainees attended the biennial Canadian Conference on Ovarian Cancer Research. 

Could you tell us a little bit more about that conference? And some of the goals that it has. 

00:15:45 Alicia 

Sure. So this is our flagship national conference on ovarian Cancer Research. It was originally spearheaded by Dr. Barbara Vanderhyden, and it's happened every two years since 2004. And I've been lucky to be attending since 2006, where I started as a trainee. It's really an incredible event that I look forward to every two years. It covers all aspects of ovarian cancer research and care. And there's a lot of focus on fostering collaborative relationships among the scientists, as well as the trainees. There's a huge component for trainees there as well. So this is an amazing close knit community that I've kind of grown up scientist in. So part of it is and this is where I met some of the trainees from GCI is since 2010. I've organized a trainee day kind of like ovarian cancer 101. That happens right before the main conference to introduce them to all the topics that they're going to be seeing at the conference. 

00:16:48 Nicole 

OK. 

00:17:00 Alicia 

You know, get them to connect with each other as well as hear from survivors. So we have usually 2 survivors speak to the trainees as well. For me, hearing from them early in my training really solidified wanting to stay in the field and I, frankly, I feel like they're the reason that I'm still in the field is hearing that so young. So we continue that as well, and then survivors also attend. 

Last year they actually attended the full conference as well as a lunch with survivors and trainees, which is also a very popular and important event because you know these individuals continuously tell me how much they were inspired by their survivors. And there's actually people in contact even now, like survivors and trainees through Canadian Conference on Ovarian Cancer Research and still continue to connect. It's a great a event. 

00:18:04 Nicole 

So that's great. And there's a lot of lot of power in hearing those survivor voices and connecting them early on to, you know, as you were mentioning just you know improve the quality of the research. So that's excellent. 

Can you tell us a little bit. About the resources that are available to ovarian cancer, researchers through OCC? 

00:18:32 Alicia 

So I would say so those models I was mentioning that scientific toolbox. UM. We are actually really focused on making those as available and shareable as possible because we want to, you know, facilitate high quality translational research across the board. So we have an online catalog of what we have and I'm right now working on master agreement to facilitate sharing among scientists in Canada, in a timely manner, because then sharing of these things can take time. 

00:19:08 Nicole 

OK. 

00:19:11 Alicia 

So it's trying to make it a little easier. We also have a large tissue banking network which is invaluable for facilitating research as well. We fund 7 tissue banks in six provinces, and we want to keep growing that. What I think is a really good resource is actually the network that we have. So, we have 250 plus, members of scientists, clinicians, trainees, survivors added. It's that are all kind of interconnected that we are at the center of, and I feel like especially a young investigator or someone who lives, who works in a small center it can be invaluable to get into that network and we can, you know, connect them with the right people, that they're looking for. Specific expertise or uhm to foster new collaborations. 

As well, our patient partners and research group has really become an important resource, especially for those in more of the basic or foundational science. We're really trying to engagement in that area, as you can imagine, that's a little more complicated and no one really knows how to do it yet. So, we've had a lot of interest from the translational scientist to meet our patient partners, start to bounce ideas off each other and it's already leading to some interesting kind of organic collaborations in that way as well.  

And then we do obviously we fund scientists through OCC and other means. Notably, through collaboration with Cancer Research Society. So we want to keep growing that aspect as well. So as things up over the next few years. 

00:21:13 Nicole 

Now our audience base, I would say is really mixed around those who you know would be on the patient side, survivor, a support person to someone who has a gyne cancer or who has lived through a gyne cancer as well as both the research and clinician side. If either one of those groups is someone who's listening who's interested in getting involved with Ovarian Cancer Canada, you know what would the best way for them to do? 

00:21:45 Alicia 

So you can go to the website, that's probably the best idea. It's ovarian canada.org. We also have an info at e-mail account, so info@ovariancanada.org. Basically, if you e-mail that e-mail they will direct it to the appropriate person. We have a lot of support staff as well as the research staff, myself and Jessica. So yeah, that's probably the best way to get in touch and then it will just be directed to the right people that the audience is actually really reflective of who we are connected to as well. 

00:22:29 Nicole 

OK. 

00:22:30 Alicia 

So, we would have something for any of those audiences. 

00:22:35 Nicole 

I'm just checking your website out now and I know we'll include the website link in our show notes, as well as your various social media channels, which are also another good way to connect with OCC and see what you have going on. So we'll definitely include those aAs well. 

Thank you so much for joining us, Dr. Tone. It was really great to connect with you and learn more about your role and all the work that you're doing with OCC is excellent to hear the initiatives that you and the group are driving forward. So thank you for coming on the show today. 

00:23:16 Alicia 

Thank you so much for having me. 

It's a pleasure. 

00:23:19 Nicole 

It was a pleasure. 

Outro: 

Thanks for joining us on the GOSH podcast! To learn more about the Gynaecologic Cancer Initiative and our podcast, make sure to check out our website at gynecancerinitiative.ca.