S2E1 - Patient engagement in research funding: Learnings from the Canadian Cancer Society (interactive transcript)
Meet our guests
Don Wood was a caregiver for his late wife Sherry who battled Stage 4 metastatic colon cancer for 3 years. He also lost his only brother Ken to leukemia as a young adult. Don focuses his time now when not golfing or skiing working and volunteering his time primarily in cancer research for several provincial and national health care organizations including the Canadian Cancer Society. He recently co-authored “Co-Creation of a patient engagement strategy in cancer research funding” with the Canadian Cancer Society.
Judit Takacs (she/her) is the senior manager for partnerships and engagement in research at the Canadian Cancer Society. She was the staff lead in co-creating the patient engagement in research strategy and works to diversify voices in research and research funding. She holds a PhD from the University of British Columbia and a coffee from the local coffee shop – though the latter is not yet a formal degree.
Dr. Michael S. Taccone is the proud Founder and CEO of Childhood Cancer Survivor Canada, Canada’s first survivor-led organization which aims to unify and empower the growing childhood cancer survivor community through awareness, education, access to care and peer-support. By training, Michael is a senior resident of neurological surgery at the University of Ottawa and completed his PhD in the Surgeon-Scientist Training Program at the University of Toronto. Himself a survivor of childhood cancer, Michael merges his experiences as a patient advocate, cancer researcher and junior physician to influence policy, research and practice for children and young people living with and beyond cancer in Canada. As a patient partner and co-investigator, Michael contributes to several CIHR-funded AYA and childhood cancer national research programs, is an acting co-chair of the Integrated AfterCare Advisory Council with the Pediatric Oncology Group of Ontario, and informs strategic development and capacity building for patient-engagement initiatives at Sick Kids Hospital, the Canadian Cancer Society and Ontario Health.
Suzanne Bays has been the caregiver for her father and husband, both of whom died from metastatic colon cancer. She spent 2019 as a Fellow at Harvard’s Advanced Leadership Initiative, where her Capstone Project focused on improving the lives of those with Advanced Cancer. She continues this work with the Canadian Cancer Society as a Patient Advocate, helping create action-oriented strategies to impact the lives of those touched by cancer. She is a co-author of the articles “Co-Creation of a Patient Engagement Strategy in Cancer Research Funding” as well as “Supporting People and their Caregivers Living with Advanced Cancer: From Individual Experience to a National Interdisciplinary Program”.
Contact the host: Anna M. Chudyk - anna.asperusual@gmail.com
Table of Contents
What is CCS’s meaningful engagement plan and strategy encompasses?
Different ways that patient partners can be engaged within the strategy?
If somebody else was trying to create a strategy like this, what you would say to them?
How can people get involved with the work that you're doing?
Resources
Publication on co-creating the patient engagement in research strategy
Canadian Cancer Society site on patient engagement in research funding
Canadian Cancer Society site on patient engagement resources for researchers (including basic scientists)
Anna
Hi everyone. Welcome to season two of asPERusual - a podcast for practical patient engagement. My name is Anna Chudyk and I am your host for this season. We're going to spend the first two episodes of this season talking about future areas of growth for patient engagement in research that we did not get to last season. As a reminder, we identified these areas of growth through a participatory study that investigated future directions for Canadian patient engagement in research. The study is currently undergoing peer review and will be sure to share it with you when it's published. So that said, today we're talking about approaches to engaging patients within current institutional funding models. As we can probably all agree on, most of patient engagement in research in general is heavily dependent on institutional funding. And there certainly are some challenges with this system, like:
How do we meaningfully engage patients in helping set funding priorities and deciding on what projects should receive funding?
How do we redesign funding opportunities to better support patients being engaged in developing grant proposals?
How do we build accountability mechanisms into grant funding to better ensure that patients are actually being meaningfully engaged once a study is funded?
Our study participants came up with some possible solutions like:
Creating designated and well-supported positions for patients in funding allocation and grant review processes;
Diversifying funding sources and creating more funding opportunities to support patient engagement in idea generation and grant development;
Requiring research teams to demonstrate a base understanding of patient engagement when applying for funding;
Requiring grant awardees to report on indicators that assess adherence to proposed engagement plans;
Formal evaluation of engagement processes.
These are all important and big ideas to tackle. So to help us get started today, we have four guests that will share their experiences partnering to create a patient engagement strategy for research funding within the Canadian Cancer Society. Michael, Susan, Dawn, and Judit, could you please introduce yourselves to our listeners?
Judit
Hi everyone. My name is Judit Takacs and I am the Senior Manager for Partnerships and Engagement at the Canadian Cancer Society (CCS). I'm excited to be here. My role at CCS is largely to bring a diversity of voices to the research funding environment. And I'll pass it over to Suzanne.
Suzanne
My name is Suzanne Bays. I was one of the patient partners engaged in this research study. My background - I was the caregiver for both my father and husband who passed away from cancer. So two different provincial medical models and two different experiences through that as well. I've done a lot of strategic planning work and technology advisory work as part of my other roles in life. Over to you, Don.
Don
Oh, thanks, Suzanne. My name is Don Wood. I'm in Calgary, Alberta. I was a caregiver for my late wife, who passed away in 2020 and also lost my brother to leukemia in the early 2000. So I always say live my life with cancer. Why I got involved was I saw some issues in the system and gaps when my wife first got sick so I started volunteering. As someone who came from a business background, I thought I had a different lens. So I've been very involved with the Canadian Cancer Society for the last 3 or 4 years. And, you know, I think this work that we've done really is revolutionary and brought together some great people and some great minds with lived experiences. So look forward to today and to giving back.
Michael
My name is Mike Taccone. I am a survivor of childhood cancer. When it was resolved that set me on a trajectory for a long career in patient advocacy. I'm also a surgeon, a senior neurosurgery resident at the University of Ottawa where I look after patients as part of my daily work, which is super rewarding being both the patient and physician. I recently finished a PhD in biomedical research at SickKids Hospital in Toronto on brain tumour research, which is another passion of mine. Most of my advocacy work is in the area of childhood cancer survivorship, as well as adolescent and young adult cancers. I got into that basically from my own personal experience and, along the way, making friends who are also either survivors of childhood cancer or actually going through cancer as young adults. And we decided that we needed a stronger voice and to creates a community for us. With that, I founded Canada's first organization, called Childhood Cancer Canada, that is run by survivors, and is geared towards survivors to create education opportunities for survivors, a place to connect with and also somewhere to belong and have a unified voice for that population. And so I was really excited to hear about what the Canadian Cancer Society was doing because I think being engaged in research as patients is one of the most important things that needs to take place if we, as researchers and the medical community, are going to fully understand the impact of the work that we're doing. I’m really excited to join. Thank you.
Anna
Thank you all once again for being on here today. So let's launch right in.
Could you please share with us why the Canadian Cancer Society decided to create a patient engagement strategy for research funding?
Judit
The research and health care community are building consensus across Canada and across the world on the benefits of patient engagement in cancer research and research funding organizations are no different. We're looking to engage with patients. CCS recognizes the value of patient engagement, and we wanted to implement patient engagement, but in a meaningful and systematic way within our research funding processes. And so what we really needed was a plan. And we created one with patients, caregivers and researchers.
Anna
Could you tell us more about what CCS’s meaningful engagement plan and strategy encompasses?
Judit
The patient engagement and research strategy is really a complete plan for engaging people with lived experience in research funding from start to finish. It includes a vision, aims, and guiding principles. It has four different ways to engage depending on your interests and your levels of availability, and 13 patient engagement activities. It also includes a section on impact and evaluation, which has six statements for success. A description of the plan and more on engaging people in research funding can be found on our website online. And really, the two key pieces of the plan is that the engagement is meaningful and that it's systematic throughout the research funding cycle.
Anna
Could you describe the different ways that patient partners can be engaged within the strategy?
Judit
So there's a lot of different ways that the group thought of for engaging patient partners. When we originally did the thought-storming exercise, I think the group came up with 60 different patient engagement activities. Now, even we recognize that’s not practical, so we prioritized that down to 13. So right now we have 13 patient engagement activities or different ways of being engaged or involved. But I'll just cover a few of the main ones.
The way we think of it is to have that patient voice in all the parts of a research competition.
So from when the research competition is just being thought of, to being created, to when it's actually had applications come in, to when it's funded. Along that continuum at the very beginning and end is our advisory council that helps advise our broad research direction. So we have patient members who are equal members of our council. They have a voice. I think there's three right now of 12 or 14 members, but our council is going through a bit of growth and change so that number might change. They help to do things like suggest and set research directions, or identify gaps where research funding might help.
Then, once an idea has come along for research funding, we actually have to develop an RFA or a request for application. And we have program advisers or people with lived experience to help develop that. So things like what types of requirements should we have in our research competition that's important to patients that would make sure they get the right type of content across from a researcher.
Then the competition goes live and hopefully researchers apply. Once we get the applications, then we have the review cycle. There’s scientists, researchers, and our patient reviewers (equal members again) who review and make some of those evaluations on whether the research is scientifically meritorious but also relevant and consider all those types of questions. And our patients score just like our researchers. So everybody has the same weight or weighting in terms of voice.
Then, at the end, we think about what happens once research has been funded. So we have things like having patient partners tell their story of the significance of research and patient involvement in research. We also work with our patient partners in terms of helping to integrate them into grants. So sometimes we match patients with researchers.
So those are some of the ways patients can be involved in the different parts of the granting cycle. And we have others but that's just to get an idea of the breadth of how you can get involved. And some of those are more complicated. For example, the reviewing is complicated. It takes 2 to 3, or sometimes 4 months. It’s 30, 40, 50 hours of a reviewer’s time — there's training involved, there's meetings involved, and that’s a lot more complicated than, for example, if somebody wants to tell their story. Or sometimes, depending on the program or the new competition we're creating, it might be relatively simple, so it could take 1 or 2 meetings or a little bit of review, or it might be a little bit more complicated. So, a whole range of ways to get involved - because it depends on what people want. Suzanne, did you want to add anything to that?
Suzanne
I think I think one of the things that was really important in developing this plan was that it had an action orientation at the end, and I'm really pleased to see that several of those activities have already been concluded. The plan finished last year, and already we've made really big differences in how patient engagement is handled right from start to finish. For example — adding people onto the advisory group, embedding various people into the actual research studies, having them evaluate as part of the evaluation team. We bring in a diverse set of voices to those discussions. In some cases we are researchers, and in some cases we are patients, and sometimes we are strategists, etc. and we carry many voices. Having patients involved in start to finish activities is really important to improving the impact of those research funds, and if we improve the research funding, ultimately we should be improving the impact on the patients themselves.
Anna
Could you tell us more about how you came about in creating the strategy? How did it come to be? How did you conceptualize it, and what did you learn in the process of co-creating this strategy?
Judit
Maybe I can start and then I'll pass it over. When we were starting out, one of the key things was that we knew we needed was patient engagement from day one. So other than a single document that we created called the terms of reference that hopefully laid out what we were expecting to do (i.e., create a strategy, beyond that, we didn't create anything without patients, caregivers, or researchers involved. So the first step beyond thinking we need a strategy was reaching out to find people with lived experience and researchers to build that team that was going to create the strategy.
Suzanne
As Judit mentioned, there was engagement right from the beginning, and each meeting sort of built on the one previously. And we all had homework every time prior to the meeting. It was like being back in school in some ways. And what I was incredibly impressed with was the overall engagement of everybody that was involved. People came prepared. They came with a voice and an opinion and were very engaged throughout the whole process to make sure that the work was top quality. To a person, everybody showed up. Everybody wanted to really make a difference. And I think that engagement of the entire group really made a huge difference in terms of the results of the work.
Michael
What I recall most is a certain amount of energy always present during our meetings. It was obvious that this area of patient engagement is something that I think patients have been wanting for a while, but have had a difficulty with. The fact that you've got the Canadian Cancer Society that’s actively saying you need this and reaching out was finally like a breath of fresh air — to have a venue where that voice could be heard, to come together and actually feel heard. And that was a lot of the beauty behind it all. We really felt like our voices, as either caregivers or patients ourselves, were finally being heard.
Don
The only thing I'd add was that I think it's very bold — what CCS has done here is very bold. And other organizations, patient engagement organizations, and advocacy groups are looking at it as a model. And I think that's a win in itself. Like my colleagues have said, we came together as a group with no expectations, but we connected from day one. And it wasn't without hiccups and stops and starts, which is what I think makes the body of work that came out of it and this beginning of it so important.
Anna
I think that's a very important message that we heard a lot in season one. And I know just talking to researchers and patient partners in general, it's that understanding that you don't necessarily have to have all the answers. You don't have to know what something will look like, because that's not what co-creation is, but it's the understanding that it's bringing together people at the table, having a terms of reference that helps lay out some sort of a common vision, and then leaving the space for everyone to come together as equals and to work together to shape things into being something great. And I know it's often scary when you do it for the first time, thinking, what are the parameters? What should things look like? But to me, that's a very powerful message to keep encouraging people in this space to know that the most important part is bringing people together, deciding on a vision, and then through that, trusting that you'll come together, like any team, to figure out what this vision will actualize into.
Could you share with us any sort of facilitators or key challenges that you faced in creating the strategy and how you overcame them?
Michael
I think that one was the terms of reference, making sure that everybody is on the same page.
The other great facilitator that I found was the lack of an agenda or the lack of a plan. When there's a lack of a plan, everybody feels like an equal because it's up to us to create that plan. Whereas if there's already a plan in place, you just feel like you're trying to fit into a mold that's already there. There are many opportunities in so-called patient engagement that occur in the country and even internationally whereby, whether it's an organization or whether it's a team of researchers or what have you, they really look for people to fill a hole. And so you end up being a token person at a table. Whereas what we were able to do and what really facilitated the ability to create something, was the fact that there was a lot of freedom, which made us feel like equals to build this the way that we thought it should work, and not some sort of boxes to check. So that was a huge facilitator for what we were able to accomplish.
Don
I mentioned it a little bit before, but we didn't go without running into some roadblocks. One was EDI and recognizing and integrating diversity and inclusion into everything we were doing. And it was a cause, I'm trying to think back now, it was a cause early on where we had to stop and go back as a group and relook at it, because we recognized that we weren't getting that total, diverse and inclusive voice that we needed. So we came back as a team and we challenged it back out and actually went out and did some further work to make sure that all voices and everyone was being heard and had a chance to be included. For me, that was one of the watershed moments of the entire project because not often do you see a group kind of pull back and stop and say, oh, we're missing something. We're missing maybe a particular group, or ethnic population, or whatever it may be. But we did that rigor and everyone was very collective on that. So we stepped back and that was one of the big homework pieces that came out of it was we recognized as a group that we needed to do that, and we stepped back and we did it.
And as Michael said, when I think back on the whole thing, I never felt threatened or pushed or anything else. It was very much a value add and like I said before, a peer-to-peer relationship that we had with everyone. I think that's why we were able to be so creative and bring together all of the information and education and work that people long past ourselves had done to the forefront, so that we're bringing all of those voices and all of that information forward. And I think, that's really something that gave us momentum for taking the project forward.
Suzanne
What I think this is really speaking to is the fact that this isn't a plan that was created by 14, 15 people and then disseminated. It really went through a lot of rigour after that initial plan was put on the table. So we went out to the advisory committee on research. We got feedback from them and tweaked a few things. Then we went out to the much broader community, and that's when we started to realize that we really didn't have the diverse voices that we needed. And when we got that information back, we spent a lot of time really looking at what they said and perhaps valuing what they had to say even more critically than other voices that we'd already heard from. So I would say that this plan has had hundreds and hundreds of people's opinions forged into it, which I think makes the plan quite special. That takes extra time, but the end product is a lot better as a result. So now it's really trying to communicate that vision and make sure that we adhere to the action plans that we put in place and keep that work going forward.
Anna
That's amazing, especially to hear for other people, as we're all trying to better and more meaningfully include a greater diversity of voices in all our work.
Could you give us some further examples of how your organization and your group has supported diversity and building relationships?
Judit
CCS values equity, diversity and inclusion, much like other organizations and people. And we all recognize that we have work to do to dismantle systemic barriers and discriminations. So we're learning from and working with organizations and Indigenous partners, trying to meet people and organizations at their table and in ways that work for them.
As an example, we conducted a roundtable for the Black community with lived experience of breast cancer to better understand their research priorities. This was one of the patient engagement activities in the plan, and we reached out to Black community organizations such as the Olive Branch of Hope, the African Cancer Support Group, and Community Health Centers to spread the word. We co-designed the roundtable with members of the Black community, including one member who also led the conversation, and we ran multiple sessions at different times, including one in the evening, and offered compensation. And all of this together helped us get what we feel was really valuable, genuine input from the Black community on their breast cancer research priorities. And we're using that input to design a next round of health equity research grants.
Suzanne
The one thing that I would add (and I say this to many people) is that if you've ignored people for most of their lives and then you pick up the phone and expect a welcome response, sometimes you might be surprised. This is heavy lifting work. And it doesn't happen overnight. It absolutely has to be done. And it has to be done with care and empathy and on their time frame. A lot of people are quite suspicious when you come to them, if you've ignored them for a long time. So it's really important to really acknowledge that and then work with them in a way that's very meaningful.
Michael
What's been great about the EDI goals of the plan that we put together is that they’re already in action. Actually, I've already been on a number of grant review committees whereby our decisions for funding allocation are entirely influenced by whether EDI is in place or, if it's not within the project itself, the people who are running the project. These things are already happening for anything that’s funded by CCS, and that's all because of what we were able to do and put together with this plan. Not just EDI in the projects themselves, but even EDI with the patient partners that are part of these projects that are getting funded. So it's everywhere. It’s in action. Which is awesome to see because it's not just words on a page. It's being lived out.
Judit
Maybe I'll just add one thing, which is that it's a work in progress. Where we were at the start of creating the strategy is not where we are now and even now, not where I hope to be in two years time from now. It's a constantly evolving thing where we try to build more relationships, deeper relationships. We try to make more changes to research funding and in other places. It’s kind of constantly changing, but it feels like the creation of the research strategy helped move that forward.
Don
I'm reflecting because the next two days, I'm in grant reviews. So this is very timely. And what we've learned (and I talked about this with a lot of people last week) in the last two rounds of grant reviews I've been involved in is that we've gotten better and better each time. We're seeing the researchers come to the table with better work, more inclusion, and giving true thought to this. It's still a little bit new and it's a change, and change takes time. But it's not a one-and-done. So I think we'll continue to evolve and learn. I'm sure I'm going to learn a lot more in the next couple of days and look forward to it — seeing kind of how far we've progressed and where we're going. So it's a new work in progress, but we're there. We have more than a baseline. Like Michael said — this is real. This is here and this is now. And we're seeing it live and in action every day.
Anna
Do you feel as though, as part of your iterative process of growth, that somehow you've provided feedback to the people putting in these grants, or maybe changed your grant calls to help people grow as well, so that you are seeing these improvements within the projects that you're reviewing? Or what do you think? How does that work?
Don
I think this one could be a podcast all on its own right? The crux of everything, right? And the iteration and the learnings. That's what's so important. And that's why we talk about where have we been, where are we going, what's next, how do we quantify it, and how do we track it? And how do we show that? Because the research community wants to see evidence and evidence based on things come out of this. So I think that for me personally, I think that's well underway. And something we should all be really proud of already.
Judit
Patient engagement, and equity, diversity and inclusion (EDI) are intrinsically linked. It's one aspect of diversity to have people with lived experience at the research funding table. Somehow patients seem to get EDI sometimes a lot better and a lot quicker. So what we found with having patient reviewers on our review panels is that they bring that focus of not just the relevance and impact to cancer, but they ask the questions about EDI and bring the focus back to that. All of our applicants get feedback back on their grants. They get that from their reviewer comments or from discussion comments if it went to a panel discussion. We have changed even up-front requirements — one of the statements we have now is that CCS requires or recommends meaningful patient engagement in all of its grants. So that is a boilerplate statement that's non-negotiable. Now that has to be there.
Anna
How do you feel that your strategy then (and you've touched upon some of this right now) and all of this work has changed the research funding at the Canadian Cancer Society?
Judit
Some of the activities that were called out in the strategy that are now happening in research funding are things like having patient engagement on our Advisory Council on Research, which helps advise our research directions for grant funding. We have patient advisors co-creating new research competitions. In all of the last… I think about half a dozen research competitions we've created, patients have co-created them. In reviewing and funding research projects, we have patient reviewers (or PSC reviewers as we call them). There are people with lived experience as equal reviewers, and they're on every single panel that we have.
Michael
Speaking from the perspective of a reviewer, knowing that you’re at a table of decision makers, but representing the perspective of a patient and knowing that you're there as an equal participant in making a decision on what is being funded, is: (1) hugely validating for the patient community and (2) very much eye-opening for the scientific reviewers that are on that same panel.
I've been in situations where I've brought in the patient voice or the patient perspective as somebody who engaged in the funding decision process, and it's completely changed the opinion of a scientist or one of the other academic people on the committee. [For example, sometimes…] the lived experience of the particular disease being funded or a part of the patient experience of what was being investigated in the study’s actual experiments was something that scientists or some of these academic people had no insight into and didn't realize how valuable that piece was. That is already huge and transformative. But the other really transformative piece that I personally find is the biggest is the fact that now patients are being engaged in these projects that we're choosing to fund. Patients are part of the experiments that are going on or are part of the oversight committee that watches a project as it moves forward. We get to learn as reviewers, all of the different roles that these patient partners are playing. Many of them are creative roles because researchers are now thinking outside of the box when it comes to patient engagement. And we get to learn about these — whether they're young patient representatives that are part of the committees (such as students that are now being involved) or whether it's non-student or non-academic patient participants. There's a lot of unique and really creative ways that scientists and teams have come together to bring patients into the decision-making process and the oversight committees for these projects. And I think that's just a win and a beautiful outcome for what has actually happened at CCS.
Don
I was like a new dad last week when we were at the conference and I actually got a chance to watch a presentation from someone whose grant I reviewed. And that was the first time that this happened. No one could know that I was the proud dad sitting in the back who was one of those people who helped review the grant that they got funding for. After they presented, they put up their acknowledgments and they thanked CCS for receiving this funding that changed their research. To be involved in that, I think, was transformational. Like you said Michael, you did a great job of summarizing what we do. And I'm going to think about that tomorrow, when I do it again for the next two days, the fact that I'm part of helping change people's future and giving advice. The presentation on the project of the grant that I reviewed also had patient engagement front and center in it. So I'd like to think that was a real-life experience on what we're doing and where we're giving back and seeing it for real now. So maybe we're starting something and we'll see more of that tomorrow and the next day.
Suzanne
And I think you can tell from Don's voice the passion that these patient reviewers bring to the work that they do. I know to CCS’s credit that anyone that does this kind of review or sits on research projects is paid for the work that they do. And a lot of researchers, I think, were initially quite concerned about scarce research money going to fund patients. But CCS has increased the funding envelope to make sure that the patients are paid and that the work continues. So it's not taking anything away from the researchers and the scientific community. It's a plus. And the work will be better as a result. That also really helps equity so that people feel that their voice matters and that they can do this work in a way that they are getting paid.
Anna
If somebody else was trying to create a strategy like this — if people want to bottle this magic that you people seem to have created together — what you would say to them?
Don
It's kind of a soapbox answer, right? I've seen it already. I've actually talked to another organization this morning about it. It’s sharing outward to other organizations and sharing the work that we've done.
This work was published some six weeks ago and is out there now. Suzanne and I just presented on it live. I think we're both competitive. We were gauging how many people were going to be in the room, and people were clamoring at the doors to get in. And as Suzanne pointed out, we're in a what's called a lightning session. We were the only patient partners to present it and I think that in itself is a big moment and a watershed moment for what we're doing. And a lot of the people that were in that room (because you get to know a lot of people in this small community that we're in) were from other organizations and were keenly watching what CCS has been doing and where we have been out with this work.
I always say we're only at the beginning and we've got a long way to go. But it's making change and it's enacting change and it's very positive. And as we’re looking out across the room — networking out like that I think goes a long way. The health care community is a big community. The research community is a massive community, but I think it's also a small community. Everyone knows each other and there's a lot of sharing. So I think we've already started that. Part of what we've been doing in the last month and a half after this two and a bit years of build out has real momentum. It's upon us all to keep messaging that out and to keep spreading the message so that it gets bigger and better. We're challenged to do that next piece of work.
Judit
In terms of your question on how to bottle this, we’re looking back on two, two and half years of work. If I was starting out, maybe that would be a little bit intimidating. But I don't think that's how we started. I don’t think that at the beginning we were thinking about conferences to present at and that type of thing. We were just going step by step and laying things out in terms of the sections that we wanted to build, which were all working towards our vision of a strategy. So I think sometimes it's really important to just take it step-by-step and not get lost in that big picture of everything that needs to be built. It sure does but you don't have to do it all in a day.
Suzanne
I think in terms of the work that was done — first the plan was put together and the consultation was done. Then the work involved socializing it internally with the executive committee. I think this was a really important step as well, because without their buy-in, you're not going to get funding going forward to continue the work. So, I think as a group, we kind of problem solved on the fly in many ways, realizing, okay, what do we have to do next and why is that important and how long will it take?
As Judit and Don suggested it's two, two and a half years of work. It seems like a long time, but for a lot of this consultation you have to go out to the community. It does take time. There's no question. So keeping the team intact and committed and together is always kind of an interesting challenge of herding cats. But the team stayed together and I think that was a testament to Judit’s work.
I think it's important that this research, the whole creation of the plan is, open source and published. So rather than everybody calling Judit 16 times a day, I think that's a really good starting resource for some people. It's pretty carefully laid out there - what went on and the components, the vision. All of those pieces could be very helpful for others trying to replicate it.
Anna
So how sustainable would you say these changes are that the Canadian Cancer Society is making? And what is helping with this sustainability?
What helped keep the glue of you all together? I'd have an inkling it’s that equality, that community, that partnership, that joint feeling that you're all in it together, so you're going to see it through together. But that's just me reflecting what I've heard you say. What would you say is the answer?
Judit
I can start with the CCS pieces and let the others fill in. The strategy, and I think actually Suzanne alluded to this, was approved by both our advisory council and our leadership. So it really has high levels of support. And that means it's resourced. It's got people attached to it like myself at the organization. It's got finances put aside, budgeted for it.
Beyond that, the CCS community of staff, patients, donors and researchers are all very supportive of the work. Especially as they see the positive changes rolling out.
And you mentioned that solidarity. I'll just say, I think one of the big surprises for me was the level of solidarity that I've seen among the patients, caregivers, and researchers and staff who overall created this strategy. There were many different opinions, sometimes, of how to do things. But overall, everybody was very much swimming in the same river.
Suzanne
I think the fact that there are evaluation criteria for all the work makes it hard to get out of now. And I think that's a good thing.
One of the action items that we didn't talk about is that some researchers who are not at a hospital, etc. are in another type of milieu. They might not have access to patients or caregivers to put on their research projects. CCS is committed to a sort of soft launch now and then, in a more formal way, to pairing up patients with researchers when it makes sense by assessing patients’ interests and expertise and then trying to pair them up and match them in a meaningful way. I think this will really make a big difference going forward as well.
Anna
As we start to head into the tail end of our podcast, could you please share with us some practical information on what you think patients can contribute to basic biomedical research projects?
Michael
When we think about clinical research projects or population-based research that takes place, it's a lot more straightforward to connect with patients, I think. But a real-life box of cancer research is the kind of research that takes place behind locked doors in a laboratory or at the bench side. I think both sides have had difficulty entering into that space.
On the researcher side, researchers who are very much pure scientists have a hard time finding patients or finding places to reach out to, to get patients to be part of their research teams. Likewise I think on the patient side, if there are patients out there very interested in being engaged in some of these more biomedical or basic research projects, it's hard for them to access that world as well.
But the beauty and maybe some of the thinking that needs to change in this world involves both (a) what we think that patients can contribute to this type of research that takes place, as well as (b) our ideas of the patients themselves.
I'm a fairly good example of what I mean in terms of the patients themselves. We're not just a diagnosis. Many of us have jobs, background education, skills, talents, other parts of our identity and who we are that make us great people to contribute to a basic science project. I myself am a researcher as well as a cancer survivor. There are people out there who can contribute and even understand with relative ease the kinds of work that is going on. These people exist. And we all have very different backgrounds outside of what we were diagnosed with or our partners or family members were diagnosed with. We are much more than just a diagnosis and I think that's a piece that needs to change when we're thinking about how these people could be part of that research world. Especially if you're a scientist or an academic person.
On the flip side, I think we also need to think about the types of ways that patients can get engaged. Sure, there's going to be patients out there who are interested in getting their hands dirty and sitting at the bench and trying to learn about what's going on and can contribute in a very real, straightforward, sciencey way. But there's so much more to it. Patients can come into a laboratory and be a bridge to reaching patient organizations that principal investigators or scientists want to be able to reach out to, to get perhaps funding or get more engagement or build a partnership with because they happen to belong to a disease organization that a laboratory is working on.
Patients are great communicators. For the most part, we are exceptional at telling a story. And when you tell a story, not only can you inspire people, but you can also bring people into - whether it's team members - you can bring them into the world of the disease that they're studying. You can have them see challenges or roadblocks that they've never seen before. As an example, I've met with a researcher who was studying a type of cancer. Surprise, surprise. That's all I do. This particular researcher was very focused on developing treatment for cancer or treatment to stop the growth of tumor cells. A patient partner came in and said, “Well, you know, you keep telling me that we're years away from a cure for cancer, if not decades. How about just allowing my hair to go back after the chemotherapy because I don't like being bald all the time?” So they developed spin off project, whereby the new focus became why does chemo make people lose their hair and how can you get that back? Because if we're not going to cure cancer, let's at least make the road better.
So there's a lot of different ways that I think patients can participate in this world and give insights into things that researchers really don't have insights to.
Lastly, I think one of the most important parts of any research lab in terms of sustainability is the ability to get continued funding for the research. And that's dependent many times on grants and many times on relationships with particular organizations. And so we've actually developed a program at SickKids whereby survivors of childhood cancer now come into the labs and they work with PIs, and they work with members of the research team to co-write grants. If you can write a grant together whereby the patient partner is now sitting down and saying, I really believe in this project because of X, Y, or Z. That’s words on a page coming from someone with lived experience that’s now going to be fed to a committee, like people like us who are now making decisions on whether that researchers get funded. Off the bat we know that's important research because it's coming from someone who's been through it.
So there's so many different ways if we are just imaginative and creative about it, that these patients can really get involved in basic science research. It's not just the stuff that's happening at the bench that's the important piece. It's all of these other things that really makes that work come together and move forward and change lives ultimately.
Anna
In closing, what little actions would you say we can take tomorrow to advocate for better funding infrastructure and to really all start to collectively make these changes that you folks are so wonderfully making together?
Judit
Really, it's to give feedback and get involved. When CCS design support, they're designed for researchers and for patient partners based on research and input that we receive. So really anybody who wants to get involved can through their voice be part of that input.
Don
Mine will be easy and quick because for me because it's always the same thing. I think it's communication, overall. It’s communicating this outward and inward. We've talked a lot and done some great work on things like mentorship programs and stuff. I'm bringing along the next group of people that are going to be involved in this work. I always say we're by no means an expert. I never wanted this job. When I got it, it was something that was brought to me because of my wife being sick. I'm always very grounded in that. Michael put it so eloquently before when summarizing how we come from different backgrounds and experiences, but we're able to combine and bring that together as a collective. I think it's important to give back. Those are some of the things that we're doing now. I think we've got some traction with some work that we've done, which to all of us, I think, is hugely important. So what do we do with it after today? And that's the question for all of us. I think that's why we're also passionate about what we're doing and the work that we're doing. I thank everybody that I work with because it's been a huge honor. I always call it an honor and I also call it therapy because coming from a different background as a patient, as a caregiver, it's therapy for us too and it's a difficult role and a role you never want. But when you're put into it, and most families at some point in their lives are going to face some sort of diagnosis of cancer, you need to be aware of that. You need to be conscious of it, and you need to be prepared.
Suzanne
In terms of moving forward, I would say research getting much closer to the fundraising piece and translating into simple terms what the research is really trying to accomplish. Is this curing cancer? Is it better quality of life or a sustainable life for a longer period of time, etc? So simplifying the message into something that from a donor's perspective can help understand the impact. When people talk to me I say, if we change the way research funding decisions are made, we should be improving the impact.
Anna
For those listeners here who, after hearing everything you've said, are like me and are super amazed and want to join in or just take part in any way that they can...
How can people get involved with the work that you're doing?
Judit
To get involved with CCS you can sign up on our website. We have a research website that has a sign up where you can tell us what you're interested in and what you’d like to participate in. Or you can email research@cancer.ca
Anna
Before we wrap, is there anything else that you'd like to share with our listeners that you feel we haven't covered yet today?
Judit
I just have one thing specific to researchers, because we've talked a little bit about how it can be more challenging for basic scientists to implement patient engagement. I want to reiterate that as a research funder, we recognize patient engagement is that much harder when you're that many more steps removed from patients in your work. And we do support that. So as a research funder, we offer supports on our website. We have a site specifically dedicated for patient engagement and stakeholder supports for researchers, as well as a section specifically for basic scientists. We also have informal supports like workshops for applicants to specific research competitions and matching. We're developing some more formal supports as well. So I just want to share that we hear you. We know it's a challenge, but we also believe in it. And I'm excited to see the change happening.
Don
For me, it's more a thank you. I think you're pushing the edge, and what we're doing is innovative, evolving, and valuable for researchers, patients, families, and caregivers. So keep doing what you're doing. And people like ourselves, the hundreds and thousands of other people that are doing exactly the same thing, will continue to be engaged and to reengage, and we'll get new people out of this, which I think is a win for all of us.
Michael
I think for too long, clinicians (whether it's doctors or surgeons or anybody else in the health care sector), scientists, researchers, and patients have been working towards the same goal. We've all wanted to develop better therapies and make the experience of having cancer better. Until fairly recently, we've been trying to do it independently. Patient engagement is really where it all finally came together. Now with patients, clinicians, and researchers, we've started a new and exciting way of really moving a dial on research that's going to take place in Canada here at our front door, as well as elsewhere in the world. We're finally all learning to speak the same language and working together toward the goal we've all had independently all along. Now we're doing it together and stronger. It's really exciting.
Suzanne
I would just add that beyond being a patient advocate, we are so many more things than that. We are patients, caregivers, volunteers, advocates, funders, donors, etc. So I think it's really important if researchers have concerns to reach out to some of us and have a good discussion on what value we can bring to the table. I think you'd be surprised and think in a very good way.
Anna
Beautifully said. Thanks again to all of you for coming on to our podcast today and for sharing your experiences with us. I'd like to remind everyone out there to check out our website (asperusual.substack.com) for further information like resources shared by today's guests and interactive transcripts from this and previous episodes.
These fine folks have put out a publication as well, which we will share on our Substack. But for those of you who are interested right now in looking it up — it's called “Co-Creation of the Patient Engagement Strategy in Cancer Research Funding.” It is freely available so if you search it on your web browser, you'll be able to find it and read it.
Please also remember to subscribe to our podcast through our website or wherever it is that you download your podcast episodes like Apple Podcasts or Spotify. Lastly, if you have any questions or comments or want to pitch an episode idea, please send an email to anna.asperusual@gmail.com. These emails honestly make my day, so please do keep them coming.
Until next time, let's keep working together to make patient engagement in research the standard or as per usual.