Episode 7: The Value of Patient Engagement

Debra is a strong patient advocate and has been doing patient engagement in research for several years. She talks about the importance of patient engagement to the future of cancer care and the legacy she hopes to make. Debra also shares some important learning points for researchers and clinicians who are interested in engaging patient and family partners in their work.

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Transcript

Stephanie 

Last time, on the GOSH Podcast…

Debra

but part of my legacy is in contributing to informing what tomorrow looks like for future cancer patients. That's, that's going to live on well beyond me. And that's an important part of why I believe engagement is very, very important.

Introduction

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 treatment outcomes. 

Our podcast is produced and recorded on the traditional, unceded territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and səl̓ilwətaɁɬ / sel̓íl̓witulh (Tsleil-Waututh) nations. It is produced by the Gynecologic 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 gynecologic cancers.

Nicole

Hi, I am Nicole Keay.

Stephanie

And I'm Stephanie Lam, 

Nicole 

and you're listening to the GOSH podcast.

Stephanie

On our last episode, we spoke with Deborah Walker, a cervical cancer and ovarian cancer survivor, who was a strong supporter of patient engagement and patient advocacy. She shared her cancer journey with us last time and on this episode, we'll dive into her patient engagement work and the impact it has had on her life.

Okay, let's jump right into it. Well, Debra, I clearly know you as someone who is incredibly engaged in so many different initiatives. I mean, I work closely with you on just two of them. And I know that you're involved in many provincial and national levels of patient engagement. I am curious, though, because last time you spoke about the differences in your cancer journey related to your clinical care, I'm wondering, you know, were there differences in your patient engagement and the amount of activity that you did when you compare your cervical cancer diagnosis with your ovarian cancer diagnosis? 

Debra

I wasn't an engaged patient at all in the first cancer..didn't know, didn't care, wanted it done, wanted it over. Don't even tell me what this place is. When I drive by in the car, it gives me the shakes, right? Whereas this time, I wanted to be engaged. At the same time, the cancer center was much better at telling me what opportunities were available. I can remember, I went to the symposium in April of 2018, which was the gynecological symposium, and I can remember going to my checkups and being handed:  “Did you get this? Did you get this? Have you heard about this?” and I never really got that kind of direct solicitation or opportunity to engage. And the first time that I definitely gotten a second time, so I took advantage of that. Got to hear Dr. Hoskins in his pink sweater describ fallopian tubes in the most animated one and I was hooked.

Nicole

I wonder if you know, thinking in the 90s, and what, you know, patient and family centered care has been something that's been growing quite significantly, you know, in 2010, on, I would say. So I wonder back in the 90s, if those opportunities existed?

Debra

I don't honestly think they did. Because I'll even take it further than that, when we were in. So I was a part of the patient group that was invited to the Canadian Cancer Research conference. And it was only 20 of us. And there was a lot of conversation about how to involve patients in research. Why you want to listen to them, what contributions they can make…I mean, that's 2019 and they're only just really starting. Even some of the engagements that I'm that I'm active on, sometimes I have to tell them. 3 CTN has come up with a very good patient engagement framework, because people don't know what to do with us. I'll sit through, not so much the GCI, the gynecological clinical trials, here in Vancouver, but some of the other ones, and it's another language. It takes you a while just to get used to the acronyms. I'm sitting on a couple of engagements right now that it's another language entirely. Because as I progress through my own disease, I'm also finding that I'm involving myself in different kinds of engagements. Because I need to inform myself as my progression goes, I'm more interested, for example, in palliative care, advanced care planning. I'm really interested in the lack of information that is out there on treating neuropathy. My sister and I both suffer really poorly from, like, I walk completely different than I did two years ago. And it and it hurts. So I'm involved in different kinds of groups now than I was before. And each time I go into a different area, it's having to learn the language. It's like going to a different country, every time you go to a different country having to learn at least some of the language to be able to say hello, and goodbye, and where's the bathroom and stuff like that. Well, it's sort of like that, when you're learning with acronyms, when you're sitting with people around the table that have studied, upwards of 10, 15, 20 years to know these acronyms. I'm trying to amass them. And not just me, but most patients that are sitting there so we usually just start off sitting there blissfully, you can put it on some, there's no video on zoom now, so they can't see the look on your face. But it takes you a while to get acclimated. And once you're acclimated, then you're able to add value in a different way. But going back to what we were starting to say I don't think everybody yet knows what to do with us. We're sort of like some kind of migrant into the system. And we're really not too sure what to do with it yet. But it's getting better. And there's people like that the head Gynecologic Cancer Initiative, he's wonderful. Gavin, he asks, he double checks to confirm understanding, but he's a good communicator overall. Right? So it depends on also the emotional intelligence of the people that you've got on the committee's whether you're able to pull out of participants, what they have the potential of giving? 

Stephanie

I mean, speaking from, you know, I've only just recently been kind of working in the research environment and trying to get kind of patient oriented research in the eyes of kind of more researchers in our community. It is difficult to kind of know how to do these things well, and, you know, in some ways, I think a lot of people fear that, you know, it takes extra time. I think I've come to realize that by engaging patients, we become so much more efficient, and we're able to kind of catch some things way earlier instead of going off course, and doing things incorrectly. 

Debra

It's really hard to, to get them to see that that investment of time really is going to pay off because they haven't got any proof yet, that it's gonna pay off. And then there was another one… but…I still blame chemo brain for some things. Yeah, the other one will come back. 

But basically it is a parallel, it's not unusual, what we're experiencing from the professionals who say, “Okay, now I have to teach someone, something that I could do in two seconds”, Oh, and the other thing that I really enjoyed is that Stephanie had arranged as part of our advisory council to do a tour of the research center. And that helped elevate my understanding of what happens and what a researcher does, and the kinds of things that they're working on were really stimulating and, and I think it helped the researchers because we were engaged and they got a chance to see that there were things that we could contribute and that two way sharing is always going to elevate, it's never going to be just a multiplier of one, it's going to be a multiplier of many things. Ah! I see, I knew if I kept talking, it would eventually come. The second piece was that there is a concept called design thinking. And design thinking is where you bring stakeholders in at the beginning and problem solve as you're going along so that when you get to the end, you don't have someone put up their hand who has not been involved, who says, “but you didn't think about this? Or you didn't think about that.” And now you've got to go all the way back to the beginning, potentially, to fix something that if you had used design thinking, and design thinking is one of the ways that you involve all of the stakeholders and the stakeholder. I mean, the ultimate stakeholder for me in cancer research is a cancer patient. So similar to if you were in a business, you would bring in finance, you would bring in marketing and you would bring in customers. So why wouldn't you do the same thing when it comes to cancer research or cancer end user initiatives?

Nicole

I wonder, well, I don't wonder, but just from my own personal experience. I also attended the walkthrough of the research lab, and that, for me, was really eye opening because when I wanted to get involved some way, but you know, wasn't really sure where that fit. And when I thought about research, I felt like, what possibly could I have to contribute in that space? Like, you know, as you were talking about, Debra, you know, 10,15, 20 years they've been working in this field and doing these types of research studies that I know nothing about? And how can my small little story help inform or change or improve outcomes? And I really felt like it just there wasn't value in me being involved in that space. Until I did that walkthrough and was able to chat with the different groups about the work that they were doing. And then, them also ask questions and be interested in, you know, your journey or what brought you here. And that was kind of eye opening to me that like, you know, my contribution may not be on the same level of what their contribution might be, but is equally as valuable in terms of just providing that human element to it and the lived experience of it, right. And I wonder how we get more patients to kind of hear that and feel that and have the confidence to speak up and put their hand up to participate.

Debra

One of the things that, one of the engagements that I'm on right now, it's called a P2P Connect, and it's a patient to patient partners, patient to patient connection, and it's specifically talking about engagement. And if it's foreign already for the researchers, and it's foreign for the practitioners or not so much foreign and it's just a new concept. And everybody is like a regular adoption scale, right? There's early adopters, there's mid adopters, and there's late adopters. So the ones that are the early adopters, we already got on the patient side and on the practitioner side, and the research side. Once they start to see that there's more successes, and that, for example, one of the things that we've been talking about with Gynecologic Cancer Initiative clinical trials, is incorporating patient reported outcomes as being a required component of their research. Once they start to see… not so much that it's legislated because we never like to think of things as mandatory. But when you can see that there's a WIIFM or what's in it for me, you're more apt to, to start to adopt. And so that you can start to get more of those mid adopters. And it becomes more of a standard of practice as opposed to an anomaly of practice, which is part of what we wanted to do. 

And another example from that walkthrough was that one of the research projects was also on using material from the tissue bank. And I went, “this could be part of me that's in this slide it” so making that personal connection to and that's one of the one of the presentations that we're going to be doing to that P2P Connect shortly is how to make sure that you're strategic about the engagements that you're taking on. So that it has a personal connection to your why, to your purpose, to what it is you want to do. Don't just randomly go take the first three initiatives that show up and they may not have any relevance to you. So number one, you're not doing service to yourself, because you're not going to pull out of this as much as what you could then then if you were participating. Number two is you're doing the initiative a disservice, because now we got a patient representative sitting on this engagement that isn't invested in its success, isn't invested in making it all that it can be. And that's another part of, I mean, it's involved a lot of time investment for me to learn what the difference is between a POSI and a REDCap and all these different systems. But, I'm also finding now that the base of knowledge is now having applicability in other engagements. And so it has a multiplier effect. And the more and at the same time, you don't want to stop an engagement because you finally got the knowledge that you want to have. But you've also got to allow room for other people to come through. And, and for it to be like, I like to think of it a little bit like a sourdough starter, you know, you got to have the base that you got to have that starter for it to be able to grow. And, and you got to keep fostering it. And as long as I can, the intent is to continue to do that. And, at the same time, share with each other what your successes have been, and what best practices have been. Because this isn't something I'm doing casually this is, this is part of me and part of my treatment and part of fighting for my life is to contribute back and to increase my body of knowledge as much as I possibly can.

Stephanie

I mean, I think one thing that really stuck with me that you mentioned earlier was kind of that difference between your initial diagnosis, your first diagnosis and your second diagnosis. And, you know, being able to engage with these types of initiatives and kind of what that had in terms of improving your quality of life and how you felt about the diagnosis and how you approached the diagnosis. And now, I'm just, I think, Nicole yet you mentioned such a great question about, you know, how we can continue encouraging more patients to be involved. Because, you know, I wonder how that actually has an effect on patient outcomes and their quality of life and how they approach their diagnosis and their treatment in the long run.

Debra

I have a friend who was diagnosed with lung cancer the following April after my diagnosis. And his progression of his disease was quite rapid, and he passed away this past March. And, and he didn't know how to engage, and he didn't know how to get the most and he was also rather skeptical. There's a six, six hats thinking - it's a theory on how to get different points of view and perspectives into things. And one of them is a black hat. And he never quit wearing his black hat - He always was looking for the…not the easier…he was always looking for the alternative that was going to get him more of the results that he was looking for, as opposed to facing what he needed to face. And he also had a language barrier. So he didn't hear things quite the same way. And we've talked a lot in different engagements about how to connect with patients that either have different cultural backgrounds or language backgrounds or degrees of interest in maybe not looking for a curative program, but looking at about how to work when it's non curative. I mean, one of the things that we've got with BC cancer, is looking to eradicate cancer and we know that that's an admirable goal. But in the short term, it's not going to happen. And so what we want to do is we want to help people live with cancer more and you're going to see more and more of it as being a chronic illness as opposed to a definite life sentence. A chronic illness requires an engagement in a different way because it's going to provide long term challenges for you that you never really even thought about. Like even myself, the who I am today physically is completely different than who I was three years ago. And being cognizant of the fact that Grace be to God, I'm here in three years, it's going to be a completely different still. So it's hard to engage people when they're dealing with so many levels of issues: physical, mental, familial, relationship. I mean, this time last year, my sister and brother and I got in a car and we went on a cemetery tour, looking at where we would choose and why we choose it and, and, and so you look at so many different things. My sister, as a result of her diagnosis, and my diagnosis, I guess, in some part, has done her work towards becoming a death doula, or an end of life doula, as they've moved towards. Because we all seek different ways of putting a stave on the burn. And in some ways, that's the way a diagnosis feels, it feels like a really fast, really hard, really horrible burn. And you don't know how to soothe that and engagement is for some. The other part of it is there's so many people that are being diagnosed, that the pool is rather large to find people who are willing to be engaged. And so, it's identifying those that have either the capacity or the desire, and at the same time recognizing and honoring the fact that there are those that don't, and can't. I think that's an important part of it as well. And that, just like me, engagement is an important part of who I am this time. But the first diagnosis, like I said, didn't want to even see that building ever again. And so recognizing that different, different stages of a person's life. You're a different, you're never the same person, two moments in a row, you're always changing and evolving, and recognizing ways of re-engaging with people. Especially if it's chronic, at one point in their diagnosis, they're going to not want to, and then there's going to be other points that they are. So how do we make sure that the arms are still outstretched and ready to receive when or if they're in a position and have a capacity to participate in that way. 

So as many different types of people, cancers, as there are, there's just as many different kinds of people. And we're all different and unique. And that's to me, part of why it's important for patient engagement to be part of research….is recognizing that we can't be painted with one brush, it's the same, one of the things we did in the lab walkaround was looking at breaking down stage one, stage two, stage three and stage four now into different categories, to recognize that there's different ways of treating even within a stage category of a particular disease. I mean, that's similar to the complete variability and diversity of the kinds of people because we're people first, and we're a diagnosis second, right? But sometimes, we need to be doing things as part of our engagements to reflip that because sometimes we get the diagnosis first and the person second. And, and to me, it's important to make sure that either if…at minimum, there's a balance, but preferably, we're looking at the people who have eyes and emotions and those eyes first, as opposed to what kind of disease we identify ourselves. You know, you see that going through different patient engagements to like different times when we've gotten people together that have come across diagnosis, and there are those that really resist “Hi, my name is Mary stage four, you know, whatever kind of cancer”. I'm not defined by that cancer, but at the same time, I am, it is part of the descriptor of who I am going forward, forever and ever. I will always be that cervical cancer survivor from the late 90s but now I've added another moniker to me as well. 

Stephanie

Well, I think that's something that I'm going to take away after this conversation is, you know, honoring people where they're at and recognizing that, you know, even though not everyone will want to engage all the time and that's okay. And we have to just be available when they do and if they do and if they don't, that's okay too, and it's important for us to honor that.

Debra

Yep. And like I said, the big, one of the biggest differences is, just to loop it back to that the first part of the conversation. One of the biggest differences for me was accessibility to opportunities to engage. And as Nicole mentioned, I mean different time, 20 years ago, there may not have been opportunities, but all the more reason to shout them out and shout them loud now, as they come available. And I mean, to have an actual patient engagement department is pretty phenomenal to me. Same thing, as I don't even remember in the late 90s being referred to psychosocial support of any kind. I mean, the biggest psychosocial support we had was when you finished radiation therapy, you got to ring the bell that was about as close that you got to get some psychological support. Whereas now, we've got an amazing team and it's just wonderful. And part of when you hear frustration from patients is just not knowing the sheer diversity and breadth of the support that is available. And knowing how to navigate the system. Another other reason it's important for me to engage is just so I understand. If I turn left, and I go down this hall, where is this actually…not literally, but figuratively. How do I navigate the maze, that is cancer treatment, because it is such a huge health care issue. And it's got a huge mechanism that's in place. But even the difference between the way it's structured in one province versus another province is completely different. Looking at the way Ontario is structured versus the way BC is structured was eye opening to me. So you can’t even give advice on how to navigate. We did a really great initiative on mapping out the patient journey, and part of it was just having somebody that can help hold your hand, while you figure out where everything is and what everything does. It's like getting on a cruise ship. Have you both been on a cruise? So the cruise ships are humongous. And it takes you all of your cruise to figure out where is the elevators? Do you turn left when you get off? By the time the cruise is over then I discovered a whole new floor that I've never actually seen before. So similar kinds of things…A. you're learning a new language B. you're on a cruise ship that you can't figure out how big it is. So there's a lot of challenges for a patient in addition to the fact that “oh my goodness, I just got what?” So having somebody to navigate, and that could be patients that could be other people, but finding ways to help patients navigate their way through a really unusual time in their life and in unusual places.

Nicole

Mm hmm. I loved what you said early on that the treatment is not done to me, it's done with me. And I think that is a really important piece for patients to know. I think those who are not as versed or haven't been through any sort of health care crisis before… anything serious. It's a whole new scary world. And you know, you may just sit back and take what's presented to you and not feel comfortable to ask those questions or know where to go and, you know, you've spoke to two very different journeys that you've had. I'm curious if you have any advice for anyone who might just be starting out on this journey, and may, you know, may not be sure where to go or where to turn or you know, just some words of wisdom to encourage them to speak up and to take part in their journey.

Debra

It's, it's, um, it sounds trite, but I want to say try and be as much in the present as you can. And by being in the present, there are lots of signposts that are out there. It's just you don't know where to look. And if you see one that relates to you…explore it and, and, and go, look. If you don't like what you're hearing, there's people through ethics committees, through a number of resources that will help be your ombudsman or not so much ombudsman, because that implies that they're going to do something for you or do something on your behalf. It's to help guide you through things. So I would say, be present, and don't grab all of the brochures, but grab the ones that are the most relevant to you. And unfortunately, or fortunately, most of us have someone in our personal community that has gone through, or is going through this. And so we take referrals for what kind of jeans to buy, or what version of phone we want to get from the people that we trust the most. So maybe turn to the people that you trust the most, and help them, not do what they did in their journey. But learn from the things that they learned and build on that knowledge. I think that's probably what I would say, don't try to reinvent the wheel. There's so many things that are out there and people that you know, that can help you that…breathe deep, take it one day at a time, stay present, don't leave any stone unturned if you're not finding the resource that you need, because they're out there. 

Stephanie

Well thank you so much, Debra. I think that pretty much wraps us up an hour of us chatting with you and having you share your story with us and the hour flew by. I honestly don't know where it even went. Thank you for sharing your wisdom and your story and you know, just encouraging others to engage in research and engage in their own cancer journey, however that might look like for them. And thank you again for joining us here.

Debra

Thank you for having me. One of the things that's important as a patient and just going through this is that they don't become transparent and invisible. That they're seen. That they're heard. And I hope my story doesn't bore people, but thank you for giving me the opportunity to share it and say it out loud.

Outro

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