In this episode, Nicole asks Stephanie about her experience facilitating patient oriented research at the Gynecologic Cancer Initiative. They talk about some of the important learning lessons, strategies and tips researchers and patient partners can use when starting out on their patient engagement journey. They also go through some amazing resources to get more involved with patient-oriented research (for both patient partners and researchers!) To learn more about patient-oriented research and how you can get involved check out these resources:
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 - https://bit.ly/3jsViHM
Instagram - https://bit.ly/3dRQsCF
Facebook - https://bit.ly/3knUgOw
In this episode, Nicole asks Stephanie about her experience facilitating patient oriented research at the Gynecologic Cancer Initiative. They talk about some of the important learning lessons, strategies and tips researchers and patient partners can use when starting out on their patient engagement journey. They also go through some amazing resources to get more involved with patient-oriented research (for both patient partners and researchers!) To learn more about patient-oriented research and how you can get involved check out these resources:
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 - https://bit.ly/3jsViHM
Instagram - https://bit.ly/3dRQsCF
Facebook - https://bit.ly/3knUgOw
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 the lives of people with gynecologic cancers.
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. Hi, I'm Nicole Keay, and I'm Stephanie Lam and you're listening to the GOSH podcast.
Nicole
Today's episode, we are going to be talking about patient engagement and patient oriented research. And sitting in the hot seat is our very own co host Stephanie Lam. She is a fierce advocate for all things patient engagement. And I am really excited to have this conversation with you, Stephanie.
Stephanie
Yes, one of my most exciting topics for me to talk about. So I'm really excited to share more about it on the podcast today.
Nicole
So why don't you start off by telling our listeners what patient oriented research is?
Stephanie
Yeah, for sure. So I actually took a bit of a definition off of the Canada's strategy for patient oriented research within the CIHR. So for listeners who aren't sure about what the CIHR is, it's the Canadian Institute for Health Research and this is where a lot of funding that researchers and scientists are applying to obtain in order to do their research. And part of this institute, is one of their major strategies is to incorporate more patient oriented research. And they've developed a strategy and part of the strategy also defines what patient oriented research is. So I'll just read out the definition, and then we can talk more about it. So according to the strategy, patient oriented research is about “engaging patients, their caregivers, and families as partners in the research process.” So this engagement helps to ensure that studies focus on patient identified priorities, which ultimately lead to better patient outcomes. So this is the, I guess, the official definition of patient oriented research in Canada. And I think that this has, upon my journey of engaging with patient partners in our work, I've come to learn that there is such a broad spectrum of patient engagement that is available to researchers as well as patient partners. And when I was learning about this, they actually talked a lot about this spectrum of patient engagement. And we'll probably put this kind of image on our show notes, but patient engagement can come in all forms. At kind of the most preliminary form, there's, you know, patients are able to learn and be informed about their care or the research. And this is kind of the most preliminary level of patient engagement. So it's very, it's still very much of patients receiving information from researchers. And, you know, right away, I think one of the most important ones that we talk about is the informed consent process. So for research studies and stuff, there's always an informed consent where patients are learning about the study, they're being informed about their study and that's a really important part to it, but you're not really engaging with patient partners, as a equal partner in the research process. So the other kind of forms of patient engagement also includes consultation involving patients and then the last two, which are definitely more much more engaged and much more I guess, heavily dependent on patient partners is kind of the “collaborate” and the “empower” phase of the spectrum. So on these phases, you're really working with patient partners, such as yourself on projects like the GOSH podcast, so it's really kind of doing it together with the patient partners and really listening to patient partners and making sure that their feedback and their priorities are all kind of integrated into whatever project that researchers are working on.
Nicole
Right, right, and this was a big part of the role that you have with the GCI, right? Iss engaging patient partners?
Stephanie
Yeah, definitely, this is a really big part of what I do. And it has been a couple years that we've been doing this work. And it has been a very slow, I guess, gradual increase into the patient partner and patient engagement world for the GCI. And I think that's also relevant. I think, in some of our previous episodes, Debra Walker and yourself also talked about this a little bit. Patient engagement has been a relatively new concept in the health research space. So there's still a lot of things that people are learning about, still people are trying to figure out how to do this properly and how to do it ethically. So I think this has been something that I've really learned a lot about over the last couple years. And one of the biggest things that the GCI has been involved with over the last couple years is developing our Patient and Family Advisory Council. So as you know that this is a really, this is a group of patient partners who are interested in engaging in gynecologic cancer research in British Columbia. So we have a large group of patient partners, and every patient partner will be involved in different ways. And they'll be involved at different times of their personal journey. So I think that this is a really interesting journey. And I remember when we first started this initiative, there was Dr. Aline Talhouk, Dr. Michelle Woo, Dr. David Huntsman were all really strong supporters of this. And we were busy recruiting patients at kind of public events, we were trying to recruit them in the clinics to try to get them involved. And the very first meeting that we had, we had about three patient partners, and we were all still trying to figure out, you know, how do we do this? What does this look like? But now, I'm very happy that we're able to have so many more patient partners who are involved, like all across the spectrum, we definitely have some who are very engaged like yourself, but also some who aren't as interested in being engaged in the projects that we're doing right now. And they take a bit of a more consultation style in their engagement. And that's okay, too. And that's why I think the Patient and Family Advisory Council has been really kind of interesting, because it allows patients to be involved in different ways, depending on what is best for them.
Nicole
And are you typically recruiting people into that group? Or are you finding, you know, as the GCI gets more out there that people are coming to you and expressing their interest in getting involved?
Stephanie
Mm hmm. That's a good question. I think it's been a bit mix of both, I think as the GCI continues to grow and as we continue to engage with more patient partners, and have more public facing kind of educational material, videos, podcasts, brochures and stuff like that, it becomes a little bit more easy for people to find our group. So we've been able to recruit some people off of social media, which is, you know, a more engaging and a different way of recruitment than what we've done in the past. But definitely, when we first started, we kind of took some more traditional routes. So there are a lot of resources out there to recruit patient partners, at public events, through clinics, but also through kind of larger patient partner organizations in the province. So those were some of the strategies that we used initially. But as we continue to grow, I hope that patient partners will be interested in connecting with us and expressing their interest because we're always looking for more people to get involved. And there's never a shortage, I think.
Nicole
Yeah, absolutely. And it's something we're seeing, I think a lot more in all areas of health care, like the Patient and Family Councils are something that has been really, really important. I think over the last probably, what would you say like 10 to 15 years, it's becoming more and more the patient and family oriented care. So we're seeing these groups emerge and that opportunity for people who have been affected and are really passionate about informing how you know, standards of care and what treatment will look like, get that opportunity to now kind of help shape that which is really great to see.
Stephanie
Yeah, definitely. It has been you know a big shift in the research community. And I think that's even more of a call to researchers to try to shift the way that they do their work as well. Because we're seeing that there will be more requirements, there will be more of a need to really engage patients and family partners in the work to make sure it is patient oriented. Because I think in the past, we've seen that without the engagement, there is a lot of room for error. And there's a lot of room for mistakes. And you know, there's a lot of power to coming together and learning from each other because patient partners are the ones who have lived through the journey and can speak from their personal experiences, right?
Nicole
Yeah, absolutely. So as a research researcher, what have you learned through patient oriented research?
Stephanie
Mm hmm. This is a really interesting question, because I think everything I've learned through patient oriented research has been through the patient partners. I feel that the patient partners like yourself, and many others have taught me so much. And I think that these are, you know, this is the most important ways to learn about patient oriented research is through patient partners. But I think that there are some things that I've picked up over the last couple years while doing this. And I think one of the biggest learning things that I've picked up on is that patience is really important. So as we were talking about, you know, patient oriented research is such a new thing, it's a new way of doing things that a lot of researchers and scientists and clinicians aren't completely attuned to yet. There are a lot of barriers to doing this work institutionally. And it is new. So I think it takes a lot of patience, as someone who is facilitating a lot of this to work with the researchers, and also making sure that we are patient with the patient partners as well. So when it comes to working with the researchers, it takes a lot for them to see the benefits of it, once they do see the benefits of it. And once they do see value in the patient engagement process. They're hooked. There's like, they're, they're going to be implementing it on every one of their projects. Yeah. But sometimes it's just difficult to convey how important it is, and how useful it is for their work. So that initial kind of engagement, or that initial hook to get them interested in learning more about patient engagement is really important. And it takes a bit of time. So I think it's important to be patient in that regard.
But also, being patient with the patient partners is also really important. So I remember, you know, patient partners also have a whole bunch of different ideas, they want to implement things, they want to see change in a certain way. And I think it's also important for me to facilitate when working with patient partners to make sure that I'm also being patient when listening to their stories, and when trying to understand where they're coming from. At the end of the day, it really comes down to being able to communicate with them and being able to convey where we are in the process and not. I guess, in a way, overstate our intentions or overstate our capacity to make change, but also provide patient partners with a bit of, I guess, a little bit of hope that their input will eventually be taken into consideration. Once kind of all of these kinks and all of these little processes are put into place.
I think another really important thing is...an important thing that I've learned is that lived experience is truly one of the most powerful sources of knowledge. And I think that, you know, every single time I have conversations with yourself or any of our other patient partners, I've always learned so much about the cancer journey. And I don't think that this is something I would have learned if we just stayed working within the research space without the patient engagement because, you know, the little things that pop up as patient partners go through their personal journeys is really telling and I think that it's important to really recognize these experiences as knowledge because sometimes in society and in the research or just the science community, we see knowledge as one like very specific thing. It's usually very science driven, very research based and very evidence based, which is really important. But I think it's also really important to recognize that lived experience is also a very valid and really powerful source of knowledge that the community also needs to find a way to embrace and really consider as an important part to inform some of our larger decisions.
Nicole
Yeah, absolutely. That's one piece that was really challenging for me as a patient partner in, you know, I remember the first thing that I came to speak at, I felt like, “Who am I to come? And what value am I really going to bring to a roomful of researchers and doctors?” So you know, they're the ones that have the medical degrees, and they've got the letters behind their names, and they've been doing all of this work. So what do I have to contribute, that is actually going to be of any value to them. And I learned very quickly that I had a lot of value to them, and that there was a lot of power in my voice and my experience, but I had a whole lot of like, imposter syndrome, like internal battle with myself to get that confidence to say, Yes, I can speak up. And yeah, you know, I have something that is worthy of them hearing. And I can contribute in a really meaningful way in this space.
Stephanie
Yeah. And I think that just also goes to show that it's really important as the research community to create welcoming spaces for patients to be vocal about their concerns, to provide an opportunity for them to share their stories, and work with patient partners in that way. And it's important to be welcoming and engaging with the patient partners in a very, I think, in a very human way, and connecting with them on a very kind of emotional level as well, because that's where their stories are coming from. So I think it's important that researchers are finding engagement strategies that are really able to get down to the core of, you know, really authentic connections and relationship building with patient partners, because that is what is going to set the foundation for really good engagement. Once patient partners are really comfortable and feel empowered to share their stories and share their voices, the work becomes a lot easier, and the work becomes a lot more effective that way as well.
Nicole
Yeah, absolutely. Yeah.
Stephanie
Well, I'm actually curious, you know, from your perspective, as a patient partner, what are some of the things that you've learned about patient oriented research while you've been engaging in this process?
Nicole
Well, if you had to ask me beforehand, I would have thought this meant things like, you know, you sign up, when you're going through any sort of treatment to participate in a survey, and it might be at the start, it might be halfway through, and then at the end, and I kind of saw that as like, you know, how you could contribute as a patient. So it wasn't until I got introduced to the GCI, and to you that I learned more about the opportunities that I could actually use my voice and get involved, which was really important to me, because, you know, in going through this, I just felt like, there has to be some reason or some way that I can make this the pain that I've gone through and what I've experienced, not for nothing. So you know, I've learned that, like I just said that there is a lot of power, in my experience and what I have to contribute. And I've learned that, you know, people who are working in the research space, are really interested, like they, they want to absorb that knowledge. And it is really helpful, that, you know, we can bring a perspective that may not be thought about and I think in terms of, you know, all of our journeys, cancer or whatever it might be we're going through aren't going to look the same. So, you know, having that ability to have different perspectives brought to the research lens, you know, I learned that helps just create a much more robust or informed plan moving forward, that is going to add a lot more value and benefit others. So, you know, knowing that there is definitely space that we can contribute and make change. You know, I think it was a really important learning for myself.
Stephanie
I really liked how you brought up that, you know, researchers really do want to hear patient stories because it is very true, I think, when you were giving your presentation at the webinar series that we held for trainees to kind of look at the whole spectrum of gyne cancer related topics. Some of the great feedback that I was able to get from a colleague was, you know, this is my first time hearing a story of a patient and understanding now how their kind of daily tasks and daily work environment is contributing to improving the lives of people who live with gynecologic cancers. And I think that it's something that, you know, when we are working in research, it's, it becomes a very kind of daily the task sometimes, you know, we go through the same steps, you know, as someone who works in the lab, you're probably running experiments every, every day, you know, replying to emails, and sometimes it can feel really distanced from, you know, the actual impact that we're able to make. But I think also, by having patient engagement, and having patient stories, kind of really coming to light within the research community really helps to, in some ways, motivate people or makes them feel more connected to, you know, the lives that they are hopefully impacting at the end of the day.
Nicole
Yeah, well, I think it puts a face to the research, you know, it becomes less about whatever you might be doing in that one specific portion of it in the lab. And you know, you have a connection to something greater. And that connection is those patients who have helped, you know, share their journey and giving, giving you, you know, a bit of an inside track into what that looks like, and how much impact what they're working on is going to have. Yeah, yeah. And I think that's really, really key and something that, you know, as patients, as you are going through your journey, if you are interested, there's a lot of opportunity. You know, and and I think there is ways to reach out and get involved, and I'm sure we can talk about that a bit more. But, you know, that's one thing that that I've learned is, you know, I, I've asked for things, or I've made suggestions, and they've happened. So, you know, you definitely have opportunity here. And so you know, if it's something that you're interested in, definitely talk to your doctor or, you know, your healthcare provider to see or do some research online, see, you know, find a way to use that passion and your voice, because you can really make a difference.
Stephanie
Mm hmm. Yeah, definitely.
Nicole
So let's talk a little bit about how patients are how researchers can get involved with patient oriented research. And, you know, what are some of the tips that you would provide to them. You know, if this is something that they're just getting started in?
Stephanie
Yeah, definitely, I think that there are a lot of different things that we could probably talk about when it comes to tips. But I'll probably talk about two things, I think the first thing is that communication is really important. So I think it's really important to, you know, slow down and look into whether or not you're communicating appropriately with your patient partners. Similar to what I had mentioned earlier about making sure that expectations are being met, from both parties. So, you know, communicating this with your patient partner, but also, you know, reflecting back on ourselves as researchers and asking whether or not we are making sure that this is happening. And I think that having that authentic communication, and really consistent communication is really important to making sure that people are still feeling engaged, and that they're feeling valued as being part of the research team. This is in full recognition that sometimes things don't happen so smoothly, right? You know, there's always bumps and barriers in the research process. And sometimes the, you know, sometimes it's difficult for patients to understand the research process and how long it takes. But being really transparent with that, and being really open with patient partners about you know, this is how it happens in the research community, it takes a while to, you know, really get through, you know, get these projects running. And it takes a lot of effort. And this is what we're doing. And this is where we hope to be going is one really important part. And I think also part of this is communicating with patients to make sure that we're on the same page. So we had talked about this in the episode with Debra. But something that, you know, Debra reminded me of is that it's really important to honor our patient partners where they are in their journey. And I think that this is, you know, fundamental to I think communication is fundamental to being able to do this because if we aren't being open and communicating with patient partners, we'll never know if this is still an important part of their journey. Um, so I think communication is, you know, one of the most important things that researchers need to keep in mind when doing patient oriented research.
I also think it's really important that researchers are careful about tokenism. So I think, you know, as patient engagement work continues to increase, and as it continues to gain popularity, there is a bit of a risk that patient engagement becomes more of a checkbox, as opposed to really authentic and powerful engagement. So I think it's important that researchers are constantly checking themselves, and you know, taking the steps in the necessary, you know, engagement protocols to make sure that we are actually engaging authentically, and we're implementing the things that patient partners have been more than kind enough to share with us. And I think that this is important, because it makes sure that we're not just, you know, having patient engagement as a checkbox.
Because there is a lot of power to doing patient engagement, and there can be a lot of harm done, you know, towards patient partners, if it isn't done well and viewed as more of a tokenistic thing, and I can just see that it can be very, you know, painful and harmful to patient partners, you know, when they've so generously shared and open their stories about something that's very painful to them, and then to have it kind of just disregarded. So I think it's really important that those two things are really upheld and kept in mind when doing it. And I think that there's also, you know, I add this in as well. But I think that sometimes researchers will make mistakes along this process. And there will be times where things don't always run as smoothly. And I think part of being very aware of your communication is to be aware of the missteps that you might take as a researcher and acknowledge it, and communicate that with patient partners and be very authentic and vulnerable about those missteps. Because we all understand that it is a very messy journey. But it's important that it is acknowledged. And it's important to say the words, you know, “I'm sorry, I apologize for this, this and this. This is how I'm going to do better next time, this is how I'm going to do better in my engagement.” And I think that's, you know, that's, I think, in any place in life, that's a very welcoming thing.
Nicole
Exactly.
Stephanie
But then also, I think, in terms of how researchers can actually get involved in patient oriented research, there's a whole bunch of different resources out there. So you know, as I mentioned earlier, there's the Canada’s Strategy for Patient Oriented Research. So that's on much more of a national level. And there are a whole bunch of different resources that are based out of that strategy. There's also a lot of, I think, provincial resources. So the BC Support Unit is a provincial hub that really coordinates patient oriented research activities across BC. So for them, they are involved in areas that aren't just gyne cancer. So they are involved in all types of research. So they can really help connect to patient partners, they do training to support researchers on how to do this work. And there's also a lot of different resources at different institutions and universities. So, for example, UBC has a great knowledge exchange kind of portfolio that really supports similar types of work. SFU has a Community Engaged Research Initiative, that also does a lot of webinars, a lot of events to teach people how to do this type of engagement. And I think of course, I'll put a little plug for us. But if you are a BC researcher who is conducting work on gynecologic cancers, you can always reach out to the GCI for resources. And if you want to connect with patient partners more directly, you can definitely reach out to us. And we can help set that up because it is you know, we have our Patient and Family Advisory Council and that's, you know, one really important step to doing patient engagement is having the ability to connect with patient partners, and that initial engagement, so definitely reach out to us and we can help find those connections.
Nicole
I think it was interesting. I think it was through the BC Support Unit that I had her presentation the other week that was a researcher and patient partner and they were talking about the contract that they had in place, which I thought was really interesting. And the patient partner just spoke to how important that was for her to have everything that she was comfortable with really laid out. And that you know that as you spoke about that expectation setting, done right from the start, and that was something that kind of guided the process, but they even did go back and revisit and make changes to to make sure that she was comfortable throughout, which I thought was just a great way to have that really, really clear for both parties and something to guide you as you move forward. So, you know, I don't know if that's a common practice, but definitely something that, you know, might be key for people to look into, just to, you know, keep that communication and that, that level setting, really top of mind.
Stephanie
Yeah, definitely, I think it's a practice that is very highly looked upon within the research community, and like having a terms of reference and making sure that everyone is agreeable to the same things and having those initial conversations with patient partners. So I remember when I was doing recruitment for the PFAC, I would have one on one conversations with patient partners before they joined the team. And that's a really important part for me to get to know the patient partner and have that initial kind of relationship building really early on. And sometimes these conversations would go for like an hour and a half. And it's like, amazing, because I learned so much from patients when they talk about their journey. But it's also really important for me to understand what they're looking for out of the engagement and making sure that, you know, I can keep that in mind if we have something available that might be of interest to them right away. But if not, then you know, as things go along, as projects come up, I can find ways to involve them based off of their interests and their passions, and what they hope to hope to do within the engagement. So definitely having like a bit of a contract and terms of reference is really, really great, and can really help to solidify that relationship building between the researcher and the patient partner.
Nicole
Yeah. One thing that I think is really key for patients to keep in mind, too, is just their readiness to get involved, right. I think there's times in your journey, that you might be really vulnerable, or, you know, definitely, I think through the treatment phase, especially where, you know, that whole process can be quite overwhelming. So I think that's something that those who do want to get engaged to really just think about where they're at, and how ready they feel because it can be, you know, emotional to retell your story, or to go through depending on what you're getting involved in. So, you know, something to consider for people who are thinking of getting involved as a patient partner. Speaking of that, how can patients get involved?
Stephanie
Yeah, that's a good question. Maybe, maybe you can talk about how you got involved, because that was a bit of an interesting journey, I think.
Nicole
Well, I think that's, you know, I had a personal connection. So that kind of kicks me off. You know, I knew Dr. Gavin Stuart. And we had done the Ride to Conquer Cancer a couple times. And so we got into a discussion on one of our, the second ride to conquer cancer we did. It was pouring rain, and we were talking about survivorship. And I knew I was probably complaining about why wasn't this a thing? And why didn't nobody pay more attention to this? And so that kind of kicked off my involvement. And then through that, I got invited to attend a tour of the BC Cancer Research Lab, which is when I met you. And then really, I think I threw myself out there to present at the survivorship forum. Just as a you know, in case you need anybody...not really sure what I was signing myself up for, and that kind of just snowballed into this role that I've had. So, you know, there was a combination of me really putting myself out there and not really knowing what to expect. But then you know, or having those personal connections that helped steer me in the right way. So that definitely helped. But I think you know, now with the GCI website is a great opportunity for others, you know, in the gyne cancer space, at least, to check out. You know, I have done a little bit with the Canadian Cancer Society. But that all came through having these opportunities to speak where then, you know, I got connected with another person who reached out. And so, you know, that just provided more opportunities.
Stephanie
It's all a really big network. Yeah. But I think like what you talked about in terms of having those connections, and then, you know, having more, you know, seeing it happening in person probably also informed kind of how you wanted to be involved in stuff.
But yeah, there's a lot of different ways that patients can get involved. And, as you mentioned, I think, you know, we're always looking for more patient partners to get involved within the GCI. So any one or any patient, or family member, or you know, loved one who has had some sort of lived experience with gynecologic cancer, so ovarian, uterine, vulvar, vaginal cervical cancer, you know, we're always looking for more patient partners to join our group. And I think we've mentioned this as well. But we are, you know, because we're a provincial initiative, we are interested in engaging with patients all across the province. So whether or not you are in Prince George, or if you're in Metro Vancouver, we're always looking to engage in that way. And especially because of COVID, it has made engagement 100% virtual. So we have had to learn how to do this work virtually. And that has also been a really important learning experience for everyone. But it's also made things a lot more accessible for everyone, because now all of the engagement is done virtually. So no matter where you are in the province, you'll still be able to engage equally, which I think is amazing. So definitely reach out if any of our listeners are interested in getting involved with the GCI in that capacity. And as I mentioned, you know, we always have kind of initial conversations about what this could look like. So even if you have, you know, questions about this, or concerns about this, or you're not entirely sure about what it is, you know, definitely just reach out, and we can have those conversations.
But there are also a lot of different organizations that facilitate patient oriented research. So one of the most important ones that we've been able to leverage is the BC Cancer Patient Experience Program. So they are a BC cancer based program. And they've actually connected us with several of our patient partners, and they've been really great at kind of making sure that patient partner needs are met. And they're also really great at facilitating some more of the feedback giving process. So that's definitely a really great program to look into if you're connected to BC Cancer. But there are also programs such as the Patient Voices Network, and REACH BC who are kind of provincial initiatives that are not just centered around cancer. So any, anyone who has any lived experience with the health system can probably find opportunities within these two organizations to connect with people who are doing work in various types of research. So those are definitely really great spaces to take a look at and see if there are any opportunities that are of interest. And I think they also facilitate some of those very nicely similarly to how the BC Cancer Patient Experience Program does it. So really, making sure that it's a right match, and making sure that the patient partners are well connected and well informed. And same thing with the researcher side. So making sure that everyone in kind of the engagement process is really, really able to engage meaningfully.
Yeah, so I think those are just a couple ways that patient partners can get involved. But you know, I think so like, as you mentioned in your process, Nicole, there's always power and you know, just asking anyone like you through your connections through your network. We've also been connected with various patient partners through patients just expressing interest in being involved to their health care provider. And because we are very integrated within the clinic, with the clinicians and surgeons and others, they are able to facilitate some of those connections. And I think that's also a really great way to get involved and can really make it a little bit more personable, I think.
Nicole
Yeah, absolutely. I mean, in the fertility space, that's one area that I really also wanted to get involved in. And that was one thing that, you know, I just expressed interest and it and then it just kind of went from there, I was asked to participate in a few different things. That was an incredible experience. And it just, you know, meant me saying like, “Hey, I'm interested in this, in case there is ever an opportunity” and then it worked out. So, you know, there’s no harm in asking right? It’s definitely just something you can seek out, but there’s a lot of places to do so.
Stephanie
Yes, definitely. There’s a lot out there and I think as this movement continues to grow, we will see more and more people and more and more researchers and health environments and health systems getting involved with patient engagement. And I think, sometimes it just really takes a question to really see if that’s a possibility and push people to imagine patient engagement in their line of work. So I think definitely, if anyone is interested, just ask, you know see if it’s a possibility. Maybe that will inspire others to get involved in this environment and really see it as an important area to really invest their time and energy in as we move along in this environment to improve health systems and outcomes for everyone
Nicole
Absolutely. Alright. Well I think that takes us to the end of our show here. Thank you Stephanie. It was really informative
Stephanie
Yeah! I’m always super keen to talk about patient engagement. It’s one of my most favorite topics to talk about so I’m super excited to share and happy to have the opportunity to talk a little bit more in depth about this because it is such an important topic. I think there’s a lot of learnings for us to get from each other. So yeah! This has been a great time so thank you so much for doing this episode with me.
Nicole
Thank you! You do a lot of great work in this space so really appreciate you for sharing all your knowledge!