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Beyond Asking the Doctor: Bringing the Patient Voice Into Clinical Research · Amplify: A Podcast Powered by Patient Voice Partners

• 0:01
  SPEAKER_03: Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
• 0:11
  SPEAKER_03: I'm Ursula Mann.
• 0:12
  SPEAKER_00: And I'm Brent McCordy.
• 0:14
  SPEAKER_00: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
• 0:21
  SPEAKER_03: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listen.
• 0:33
  SPEAKER_04: I'm here today with my co-host Anne-Marie.
• 0:35
  SPEAKER_04: And Ann Rie, today we're going to be talking about Meloma.
• 0:39
  SPEAKER_04: And we're going to be talking to Martine Elias, who's the Chief Executive Officer at Myeloma Canada.
• 0:45
  SPEAKER_04: What are your thoughts on this disease area and what do you know of Martine?
• 0:50
  SPEAKER_02: Well, I've had the privilege of having a front row seat to some of the great work that Martine has led over the years.
• 0:56
  SPEAKER_02: So what I'm really curious about today, and hoping we can delve into a little bit, is about how she's been able to get so many to coalesce around some of the big issues that face this, not just this disease area, but she's been really good at how you take learnings and how to work with others on big issues, whether it's this disease or that disease, and how they stay focused.
• 1:20
  SPEAKER_02: Cause I really see impacts being made through the work she's been doing.
• 1:24
  SPEAKER_04: I appreciate that.
• 1:25
  SPEAKER_04: Martine is very collaborative and very thoughtful in terms of how to approach things.
• 1:30
  SPEAKER_04: I also have known Martine for a number of years.
• 1:33
  SPEAKER_04: I'm not sure our listeners know too much about myeloma, and I'm going to share just a little bit of a background, but it's a blood cancer that this group represents.
• 1:41
  SPEAKER_04: It's the second most common form, but some people have never heard about it.
• 1:45
  SPEAKER_04: It's uncontrolled growth of a white blood cell, the plasma cell, that ends up being affected in this area.
• 1:52
  SPEAKER_04: And so myeloma in Canada works in this area.
• 1:55
  SPEAKER_04: It's in fact the only patient-driven grassroots organization that brings the Canadian myeloma community together.
• 2:02
  SPEAKER_04: What's very interesting is Martine works beyond Canada.
• 2:06
  SPEAKER_04: And this really speaks to what you just said, Anne-Marie, and the work she does bringing people together.
• 2:10
  SPEAKER_04: So I don't know that many people know that she also does support the International Myeloma Foundation board of directors.
• 2:17
  SPEAKER_04: And she also represents Canada within Europe.
• 2:21
  SPEAKER_04: And patient advocates there address key challenges where they're talking about patients facing challenges in accessing diagnosis, monitoring, treatment, care, and clinical trials.
• 2:32
  SPEAKER_04: And this is all at an international level.
• 2:34
  SPEAKER_04: So needless to say, there's a lot going on.
• 2:37
  SPEAKER_04: And I'm really interested to dive in today.
• 2:40
  SPEAKER_04: Martin, welcome to today's show on Amplifying.
• 2:42
  SPEAKER_04: We're delighted to have you here.
• 2:44
  SPEAKER_01: Thank you for having me.
• 2:45
  SPEAKER_01: It's wonderful.
• 2:46
  SPEAKER_04: So I'm hoping that you could tell us a little bit more about yourself and how did you end up on this journey to be leading a patient organization?
• 2:56
  SPEAKER_01: Well, I think I attribute my passion to trying to help people that need sort of attention or are left behind in a certain way.
• 3:09
  SPEAKER_01: Because myeloma, as you said, is a rare cancer of the plasma cells, and the plasma cells are part of your immune system.
• 3:17
  SPEAKER_01: So it affects your immune system and affects people who are generally older.
• 3:22
  SPEAKER_01: And for many years, there was a lot of research done in hematology, but not necessarily in myeloma.
• 3:29
  SPEAKER_01: And so these patients were forgotten in terms of the access to new treatments or clinical trials.
• 3:36
  SPEAKER_01: My background is in marine mammal biology.
• 3:39
  SPEAKER_01: So I wanted to save whales.
• 3:41
  SPEAKER_01: So I ended up saving patients.
• 3:44
  SPEAKER_01: Love it.
• 3:46
  SPEAKER_01: So long journey, because I've been involved for quite some time in this world and working initially in clinical trial and then in market access and pharmacoeconomics in the pharmaceutical industry.
• 3:59
  SPEAKER_01: And then got connected to Myeloma Canada with the co-founder, Aldo Del Col when I was working in a drug space where there was a new drug that was being developed for myeloma and hadn't been a drug in the air in the field of myeloma for many, many years.
• 4:17
  SPEAKER_01: And so we hit it off and we connected.
• 4:20
  SPEAKER_01: And he started the organization and I started my journey in patient advocacy and found my passion.
• 4:26
  SPEAKER_04: That's really interesting.
• 4:28
  SPEAKER_04: What a, I want to say convoluted, that might not be the right word, but it wasn't a direct path to get into this.
• 4:33
  SPEAKER_04: And you've been leading this organization now, and having worked in Canada as well as globally for some time.
• 4:40
  SPEAKER_04: What do you think are some misconceptions that people don't really understand about myeloma and patient organizations?
• 4:48
  SPEAKER_01: I think it's not about the disease itself.
• 4:52
  SPEAKER_01: You mentioned my working at the international level.
• 4:54
  SPEAKER_01: And the reason why I do that is because many of the decisions that happen in research, in drug development, don't happen here in Canada.
• 5:04
  SPEAKER_01: They happen at the headquarters of drug company X, Y, and Z, either in the US or in Europe.
• 5:10
  SPEAKER_01: So you really have to connect with those organizations at the source to be able to affect change.
• 5:18
  SPEAKER_01: And I realized that early on in my work in patient advocacy, when I just started leading a patient advocacy department with a pharmaceutical company, and we were quite advanced in terms of including the patient's voice and talking to patients.
• 5:36
  SPEAKER_01: And I thought this was really great.
• 5:38
  SPEAKER_01: I decided to go down in the US to talk to the people who are developing the clinical trial in oncology and try to understand how we can bring the patient's perspective to the trial design.
• 5:48
  SPEAKER_01: And we're talking about this was 15, 20 years ago.
• 5:52
  SPEAKER_01: So a long time.
• 5:53
  SPEAKER_01: Wow.
• 5:54
  SPEAKER_01: I met with this fellow and I started talking about the importance of the patient voice and what we wanted to do in Canada.
• 6:00
  SPEAKER_01: And, you know, I asked him, I said, How do you include the patient voice in the clinical trials that you design?
• 6:05
  SPEAKER_01: And he looked at me and he said, Well, that's very simple.
• 6:08
  SPEAKER_01: We talk to doctors and ask them what patients want.
• 6:11
  SPEAKER_01: That's how we develop patients' perspective.
• 6:13
  SPEAKER_01: My jaw just dropped and I went, Oh my God, like we are so far from where we need to be.
• 6:20
  SPEAKER_01: And that gave me the fuel and the passion to really work in making change and affecting change.
• 6:27
  SPEAKER_01: And just to go back, obviously, Canada's small.
• 6:31
  SPEAKER_01: So you have to really talk to the people who are making those decisions right at the source to be able to include patients' perspective in clinical trial.
• 6:39
  SPEAKER_01: Because it's not about do you like the red pill or the blue pill?
• 6:43
  SPEAKER_01: Really, it's a lot more than that.
• 6:46
  SPEAKER_04: That's really interesting.
• 6:47
  SPEAKER_04: That I'm sorry that was the answer.
• 6:50
  SPEAKER_04: I'm not surprised.
• 6:50
  SPEAKER_04: We're definitely going to come back to that one.
• 6:52
  SPEAKER_04: But Martine, I also have to give you a shout-out.
• 6:54
  SPEAKER_04: You do such an incredible job.
• 6:56
  SPEAKER_04: You mentioned just a minute ago talking to the community.
• 6:59
  SPEAKER_04: You do an incredible job engaging regularly with your patients and caregivers across Canada, but also the healthcare professionals and the leadership across clinical research and thinking about what happens holistically to impact patient care with policy and access is complicated and takes a lot of work to bring that all together.
• 7:19
  SPEAKER_04: So I want to say thank you for all the work that you do on all of those fronts.
• 7:22
  SPEAKER_01: You're welcome.
• 7:23
  SPEAKER_01: I think it's important to speak to all people who are involved in developing sort of treatments and research protocols and advancing, be it treatment outcomes for patients and deciding what is the best sort of patients reported outcome that you need to measure, as well as the key endpoints for clinical trials are really critical.
• 7:45
  SPEAKER_01: And quite often research takes time.
• 7:48
  SPEAKER_01: We're seeing a lot of acceleration in research where it's happening a lot faster, but it still takes too much time for patients.
• 7:55
  SPEAKER_01: If you're living with a cancer or any disease, you want the answers now.
• 7:59
  SPEAKER_01: You want to be able to look at what is going to be your trajectory, what are you going to need?
• 8:04
  SPEAKER_01: And is research advancing as fast as it can to address your disease and to make you a better person and live better lives.
• 8:14
  SPEAKER_01: So that's how I bring my sort of collaborative lens to working with people who I need to work with because it's that sense of urgency that people sometimes tend to forget.
• 8:26
  SPEAKER_01: And we are here as sort of catalysts to make sure that people understand the importance of speed and research and why we're doing this and why we're trying to advance patients' outcomes, but also access to those therapies, which are really important.
• 8:44
  SPEAKER_02: When you were just explaining the origins of some of the work that you do, I think we've come a long way over the last five to seven years.
• 8:53
  SPEAKER_02: I think for the most part, most stakeholders in the clinical research area, innovative medicines area, policymakers, payers, regulatory agencies, researchers, all recognize the need for this patient lens and meaningful patient outcomes to really drive the innovations that we bring to market.
• 9:15
  SPEAKER_02: I think sometimes we struggle with the how.
• 9:17
  SPEAKER_02: And that's where I think the work you're doing is so important because again, to that time frame you're talking about, it takes so long.
• 9:25
  SPEAKER_02: And we're spinning our wheels trying to figure out how we do it.
• 9:28
  SPEAKER_02: And I think I don't know whether you can comment a little bit on your sort of take on how we're getting better at knowing how and what you've seen, what's really moved the dial, in your opinion.
• 9:41
  SPEAKER_01: The how is making the connections and bringing the people to the table.
• 9:44
  SPEAKER_01: We as a patient organization are not experts on MRD, mineral residual disease, or how do you measure critical endpoints for patients?
• 9:53
  SPEAKER_01: That's not our role.
• 9:54
  SPEAKER_01: Our role is to make sure that people get to the table and do connect and have those conversations because we're realizing that many people are still working in their silos.
• 10:04
  SPEAKER_01: You're looking right now at surrogate endpoints in blood cancers.
• 10:08
  SPEAKER_01: I just mentioned minimal residual disease, which is one that the US is incorporating in their evaluations for myeloma drugs, EMEA is incorporated as well.
• 10:20
  SPEAKER_01: Here, Health Canada will be incorporating MRD.
• 10:23
  SPEAKER_01: But the question is, it's great and it's done in clinical trials, and large pharmaceutical companies have the means and the ways to be able to do MRD testing.
• 10:32
  SPEAKER_01: But what happens when it gets to the real world?
• 10:34
  SPEAKER_01: What happens when it comes to your small local center?
• 10:38
  SPEAKER_01: How are they going to measure MRD?
• 10:40
  SPEAKER_01: What are going to be the standards?
• 10:42
  SPEAKER_01: Nobody's really asked those questions.
• 10:44
  SPEAKER_01: And because it's critical from a patient's perspective because it could dictate if you continue a treatment or if you stop a treatment, if you go into another treatment.
• 10:53
  SPEAKER_01: If you live in a small remote area, well, your myeloma is the same if you live in downtown Toronto.
• 10:59
  SPEAKER_01: And how is it going to be addressed and how is it going to be evaluated in your particular situation?
• 11:06
  SPEAKER_01: So things like MRD testing becomes really important, but we realize that there were many people, like all the technical, the technologists who are doing these assessments are not necessarily speaking to the oncologists who are evaluating what does it mean?
• 11:24
  SPEAKER_01: And so our role was to bring people together and develop a round table to address these issues and make sure that we have standardization across countries, that people know what are the key elements that need to be brought into that discussion so that we don't waste time at the end of the day before it becomes available.
• 11:46
  SPEAKER_01: And then we know exactly what to do.
• 11:48
  SPEAKER_01: Once the patient comes in in the ER, for example, you know exactly what to do.
• 11:52
  SPEAKER_01: Well, that's the same thing that we're trying to establish in myeloma with minimal residual disease in their patient community.
• 11:59
  SPEAKER_01: And they're very grateful for us in doing that.
• 12:02
  SPEAKER_01: And well, it to me is just common sense and doing what you do.
• 12:07
  SPEAKER_01: And we have the ability to coalesce and bring people together.
• 12:11
  SPEAKER_01: And they're actually looking at us as the key experts in terms of bringing people together.
• 12:18
  SPEAKER_01: It was really cool when we had our meeting on this particular issue last fall.
• 12:23
  SPEAKER_01: If the participants said, myelomechanic can play a role in bringing us together and they really appreciate doing this.
• 12:29
  SPEAKER_01: And that's what we realize we're actually doing something that is good for the patient.
• 12:34
  SPEAKER_02: I was just going to say it's a great example of helping folks to understand what these data points or what these measures actually mean in real life on a day-to-day basis.
• 12:45
  SPEAKER_04: And speaking of what's good for the patient, I would have liked to be a fly on the wall when you were chatting with that person about the clinical trials when he said we asked the doctors what the patients want.
• 12:55
  SPEAKER_04: What was the follow-up to that, Martine?
• 12:57
  SPEAKER_04: What was the subsequent planning for future clinical trials?
• 13:01
  SPEAKER_01: What I did is connected with my counterpart in the US and Europe because I realized that's where decisions were being made.
• 13:11
  SPEAKER_01: People who were as passionate as I was to bring the patient voice to the table.
• 13:16
  SPEAKER_01: And we established guidelines and how to engage patients within the organization and what patients can bring and what is the value of patient-centered care and prepared engagement rules and sort of guidelines as to where patients could be used and how you can have conversations with patients.
• 13:37
  SPEAKER_01: And those were established and adopted within the organization and continue today to grow in terms of the way that industry is engaging patients at the global level.
• 13:48
  SPEAKER_01: We're seeing patients participate as key players, if you will, in development of clinical trial development programs.
• 13:57
  SPEAKER_01: So then looking at the value, first of all, of a new molecule and that it brings to patient.
• 14:03
  SPEAKER_01: Is it the same or is it a Me Too compared to something else?
• 14:07
  SPEAKER_01: Then is it worthwhile developing that drug?
• 14:10
  SPEAKER_01: Asking those questions, what are the benefits?
• 14:13
  SPEAKER_01: How are you going to administer this drug?
• 14:16
  SPEAKER_01: What are going to be the key sort of collection points?
• 14:21
  SPEAKER_01: What data points are you going to collect?
• 14:23
  SPEAKER_01: Are you collecting them at decent intervals?
• 14:26
  SPEAKER_01: Because we know in myeloma, one of the data points is bone marrow, but it's taking samples of the bone marrow to look at if the MRD status of a patient, is it a good thing to do it every two months or every six months and or every year?
• 14:42
  SPEAKER_01: Patient would tell you that they want to do it as least as possible.
• 14:46
  SPEAKER_01: So what are those kinds of things that are of value and important from patient?
• 14:50
  SPEAKER_01: And in terms of outcomes, well, side effects are really important and affect its outcome.
• 14:56
  SPEAKER_01: You may be treating the cancer, and the cancer may not be there or measurable or detectable.
• 15:02
  SPEAKER_01: You may be in complete remission.
• 15:03
  SPEAKER_01: But if your side effects are really unbearable, well, what's the value of this new treatment for a patient in that context?
• 15:12
  SPEAKER_01: So having those conversations with patients and determining what makes sense.
• 15:18
  SPEAKER_01: And fast forward 20 years later, a couple of years ago, I was involved with a pharmaceutical company that was looking to evaluate a new monitoring system for side effects from a patient's perspective.
• 15:32
  SPEAKER_01: And they invited patient organizations, so myself and patient groups from Europe, to hear the different pitches from the various providers that they were considering for this wearable device.
• 15:46
  SPEAKER_01: And we gave our feedback in terms of what we heard from each of the possible vendors.
• 15:51
  SPEAKER_01: And then they made their choice on a particular one.
• 15:55
  SPEAKER_01: And they asked us to evaluate the device ourselves and wear the device for 24 hours and monitor as we were patient and provide feedback to the vendor who developed the device.
• 16:10
  SPEAKER_01: And I thought that was really cool because I've never been asked to be part of selection of a patient type sort of vendor program, a patient support program.
• 16:23
  SPEAKER_01: And I thought that was really interesting because to me, that's the ultimate engagement from a patient's perspective.
• 16:29
  SPEAKER_01: Because you're looking at an innovation and it's going to make sense from the patient's perspective.
• 16:34
  SPEAKER_01: But sometimes there are a few things that, well, they could be tweaked or they could be improved or can be facilitated from the patient's perspective.
• 16:41
  SPEAKER_01: So engagement of patients at that level is really, really important.
• 16:46
  SPEAKER_04: I think that's incredible.
• 16:47
  SPEAKER_04: And I know that engagement with patients at the individual disease level comes up a lot.
• 16:53
  SPEAKER_04: And I'm thinking of all the things that you do in myoma, but you also do a lot of things with the broader oncology community to discuss policy, to discuss situations and issues for persons.
• 17:05
  SPEAKER_04: Can you help explain why you feel that's so important to represent what you're doing in your disease, but also work with broader groups?
• 17:13
  SPEAKER_01: When you look at health policies that are being implemented today in terms of access and implementation of new and innovative therapies that are getting more and more complex, it's not really about the disease itself, but it's about how you bring the new technology to the patient and what kind of resources and knowledge and structural changes that need to be made to the healthcare system where there's a lot of gaps and there's a lot of things that fall through the cracks in my mind that affect not just myeloma, but all sorts of other diseases as well.
• 17:52
  SPEAKER_01: So to be able to make a change at the bedside of the patient, you really have to look at policies that are developing and how you get there.
• 18:01
  SPEAKER_01: A lot of these policies affect different cancer patients and population in exactly the same way.
• 18:09
  SPEAKER_01: So by bringing various cancer representatives and advocates to the table, then you're able to educate them, empower them, engage them, and then involve them in some policy changes that are meaningful.
• 18:24
  SPEAKER_01: So if you can change what happens upstream really early in the process, I always like to use the metaphor of you go where the snow melts and start to affect changes there, then when it comes downstream, then the issues hopefully have either been understood, solved.
• 18:46
  SPEAKER_01: There's a lot of discussion around some of these policies.
• 18:49
  SPEAKER_01: I'm just going to use the example of CAR T, which is an innovative treatment for blood cancers.
• 18:57
  SPEAKER_01: And it's been used in lymphoma and leukemia and myeloma, but the actual CAR T itself that is administered to the patient, it will be different based on your disease.
• 19:08
  SPEAKER_01: But the whole process around CAR T, in terms of the approach, the mechanism, how the T cells are being modified, how they're being reintroduced in the patients and the monitoring, et cetera, is all the same.
• 19:22
  SPEAKER_01: It's just the actual like T cell that is genetic modified to attack the specific type of cancer cells.
• 19:30
  SPEAKER_01: So if you could drive some policies around how to implement and how to introduce and expand CAR T at the bedside of the patient, then everybody's going to benefit.
• 19:41
  SPEAKER_01: So, yes, myeloma is a small community because it only affects a small number of patients compared to some of the other cancers.
• 19:49
  SPEAKER_01: But if we work with other groups and band together and drive policy change, I think it is going to be much more impactful.
• 19:59
  SPEAKER_01: The other thing I want to say is that we're seeing changes in how people are engaging, especially around social media, right?
• 20:06
  SPEAKER_01: When I started in advocacy, it was all about masses of people and send being very active and I want to say a little bit more grassroots in terms of voices and going and marching, those types of sort of approaches.
• 20:22
  SPEAKER_01: Today with social media, it's very individualized.
• 20:25
  SPEAKER_01: People are influencers, but in a very sort of channeled way through their groups and tribes that they hang with.
• 20:34
  SPEAKER_01: So it's important to go outside of the traditional way that you do advocacy and bring the new generation on board and educate them and how they can become better at influencing and telling their story through social media and bringing more people with them in telling their stories and affecting and influencing changes because everybody's listening for that click or a like or repost and so forth.
• 21:03
  SPEAKER_01: And so that's where you're gonna see a lot more changes down the road in terms of how we do advocacy.
• 21:09
  SPEAKER_01: How is it gonna look like at the end?
• 21:11
  SPEAKER_01: I don't know, but I know you have to think about what you did.
• 21:15
  SPEAKER_01: It's not about what you did today, it's about what you need to do tomorrow that's gonna make your advocacy a lot more effective.
• 21:22
  SPEAKER_01: So you have to think about how messages and how communication and how influence is gonna look like in a year or two years down the road.
• 21:31
  SPEAKER_02: Martin, I really want to pick up on this because I think this is a really interesting direction that I'd like to jump on to.
• 21:37
  SPEAKER_02: But I want to go back just for a moment because I think you said something really important.
• 21:41
  SPEAKER_02: And I want to make sure that our listeners picked it up and really understand it.
• 21:45
  SPEAKER_02: What you were just describing around with the Cartier example, I think people maybe underestimate.
• 21:51
  SPEAKER_02: We get really excited about these new technologies and innovations and the science behind it.
• 21:56
  SPEAKER_02: Yeah.
• 21:57
  SPEAKER_02: But the truth of the matter is that our system.
• 22:00
  SPEAKER_02: Isn't always ready and set up to implement these new technologies.
• 22:05
  SPEAKER_02: And the best innovations in the world aren't going to do Canadians any good if they can't get it.
• 22:10
  SPEAKER_02: I think the important piece.
• 22:12
  SPEAKER_02: And it's in bringing these folks together that maybe have different experiences with the disease that they're living with, but all rely on that system readiness in order to bring that innovation to life.
• 22:24
  SPEAKER_02: And that's why work like you're doing is so important.
• 22:27
  SPEAKER_02: And then maybe I can just tie it to what you were talking about.
• 22:30
  SPEAKER_02: I can speak for myself, having worked both as a direct patient care, a health practitioner, as well as working in the pharmaceutical industry.
• 22:40
  SPEAKER_02: We have often been afraid of those individual voices and social media because it challenges our sense of the expertise we have in controlling messages, but it is so important.
• 22:52
  SPEAKER_02: And you have had my experience working with you and some of the social media influencers that have for whom you've really created a channel.
• 23:01
  SPEAKER_02: My goodness, their voices are strong, knowledgeable.
• 23:05
  SPEAKER_02: They make us think differently, they make us act differently.
• 23:08
  SPEAKER_02: So I'm going to hand it over to you, Ursula, because I know you've got some questions around this that you want to ask, but I was just really excited when Martine started going down this road.
• 23:17
  SPEAKER_04: Well, I am going to pick up on that.
• 23:19
  SPEAKER_04: But I have to say, Anne-Marie, thank you for the call out around innovation not getting to patients, because that's something that's not understood enough.
• 23:28
  SPEAKER_04: When I used to work in medical, cure was found.
• 23:30
  SPEAKER_04: We're high fiving.
• 23:31
  SPEAKER_04: The team in the next room is concerned.
• 23:33
  SPEAKER_04: And I'm like, what are they concerned about?
• 23:35
  SPEAKER_04: What's we're done?
• 23:35
  SPEAKER_04: We're moving on to the next cure.
• 23:37
  SPEAKER_04: But there's such a disconnect and such a missed situation when Canadians can't get an innovative therapy and it can be a scary and challenging situation for sure.
• 23:46
  SPEAKER_04: So I think that's such an important call-out and one that we're gonna have to continue talking about.
• 23:51
  SPEAKER_04: Speaking of social media though, and advocacy, Martine, you've done an incredible job building up within a broader community healthy matters.
• 24:00
  SPEAKER_04: And I was hoping you could tell us a little bit about why that was important to you, what it is, and what it means to others.
• 24:07
  SPEAKER_01: Well, thank you, Ursula.
• 24:09
  SPEAKER_01: I must say, first of all, I didn't do all this myself.
• 24:11
  SPEAKER_01: Like I have an amazing team that work with me and that are just as passionate as I am.
• 24:18
  SPEAKER_01: And I think you bring up the Healthy Matters conference that we do every year.
• 24:24
  SPEAKER_01: And I've seen it grow from first all these individual advocates getting together in a room and not knowing each other and like being very shy in terms of am I the right place?
• 24:39
  SPEAKER_01: Am I doing the right thing?
• 24:40
  SPEAKER_01: It was very individualistic.
• 24:42
  SPEAKER_01: And we're now at our we've had our fifth edition and we're doing it again in the fall.
• 24:49
  SPEAKER_01: And people are looking forward to this event.
• 24:51
  SPEAKER_01: They call this their summer camp.
• 24:54
  SPEAKER_01: I don't know if you've ever been to a summer camp, but you always look forward to going to summer camp and meeting your friends and getting your energy.
• 25:01
  SPEAKER_01: Hopefully, hopefully, summer camp is a good experience.
• 25:04
  SPEAKER_01: So for some, it's been a good experience.
• 25:06
  SPEAKER_01: But though this whole idea of getting together and learning from each other and getting energy from the work that what others have done.
• 25:15
  SPEAKER_01: You know, I've seen advocates, Sarah, for example, who has a rare cancer, came in and was very shy the first year and is now being called upon to be a patient advocate for many sort of rare disease conditions, is traveling the world to tell her story and to share why it's important for patients to advocate and what good they can bring to this entire ecosystem.
• 25:40
  SPEAKER_01: And it's so rewarding to see that a conference like this has been able to help so many people to echo and to increase their voice and have a greater impact in the community that they work in, but not necessarily just here in Canada, but globally.
• 25:58
  SPEAKER_01: That's very, very exciting.
• 26:00
  SPEAKER_01: So we look forward to many more of these types of conferences because, as I said earlier, it's not necessarily about the disease, it's about everything that happens around in terms of the decisions around the health policy.
• 26:12
  SPEAKER_01: If you look at Canada becoming a global sort of place to come for clinical trial, right now we are in jeopardy because of what's happening globally in the world.
• 26:23
  SPEAKER_01: And so we can't let that happen.
• 26:25
  SPEAKER_01: And so we have to continue to push and make sure that our stakeholders, and I hate that word because it's all third parties, be it physicians, clinicians, policymakers, researchers, regulatory patients, HTA, people who sit down and negotiate listing agreements, understand that if we want to continue to have a privileged place to bring clinical trials and then to bring drugs to Canadians through our access policies, we are going to have to work together because it's gonna not gonna get easier, it's actually gonna get a lot harder.
• 27:02
  SPEAKER_01: And I think that's quite important for the entire system to understand that it's not about affording a drug or not being able to afford a drug.
• 27:12
  SPEAKER_01: It's about being able to afford to become a leader in clinical trial or become a third world country in clinical trial.
• 27:22
  SPEAKER_01: And that worries me a lot.
• 27:24
  SPEAKER_01: And so that's why increasing patients' voice, educating them on some of these issues is really, really important.
• 27:32
  SPEAKER_04: So, Martine, you've highlighted several different ways, and we've talked about how working together is how change happens.
• 27:39
  SPEAKER_04: And interested in your thoughts as to how your own personal health experiences over the years have shaped or changed leadership.
• 27:49
  SPEAKER_04: And you mentioned having a phenomenal team as well.
• 27:52
  SPEAKER_04: What's one or two words that comes to mind when you're thinking of what good leadership looks like?
• 27:57
  SPEAKER_01: It's really empowering your team to do what they are passionate about and to listen to them.
• 28:04
  SPEAKER_01: When we started the Healthy Matters Conference, the idea came from a conference that was done in the US with some patient organizations.
• 28:12
  SPEAKER_01: And one of my staff, Michelle Wana, went to this conference and came back and said, we have to do this here in Canada.
• 28:19
  SPEAKER_01: It's really important.
• 28:20
  SPEAKER_01: And I looked at her and said, Well, how are you gonna manage this?
• 28:24
  SPEAKER_01: How are you gonna fund this?
• 28:25
  SPEAKER_01: Because it costs money.
• 28:27
  SPEAKER_01: And I was thinking this, we were looking at all cancers, and I'm thinking about my board, because you know, I do report to a board, and what are they gonna think if we're bringing all these other cancers and it's not about myeloma?
• 28:39
  SPEAKER_01: Because obviously, my board and my organization is all about myeloma.
• 28:43
  SPEAKER_01: And so I said, Listen, I'll worry about the board, you worry about bringing this to life.
• 28:49
  SPEAKER_01: And she put on an amazing conference, and I was able to sell it to my board in terms of how this impacts myeloma.
• 28:56
  SPEAKER_01: So if we work with other cancers and make things that are positive and can influence change, then it's gonna have a benefit for myeloma.
• 29:05
  SPEAKER_01: And so that's how I positioned it.
• 29:08
  SPEAKER_01: And right now, I think we want to continue.
• 29:10
  SPEAKER_01: I think it's a really important sort of space for patients that maybe not advocate in the same traditional ways as many of the other patient organizations do.
• 29:22
  SPEAKER_01: It brings individual influencers in our space, and we see them, as I said, grow in different areas.
• 29:30
  SPEAKER_01: And I have many other examples of patients who are now on advisory councils and work with HTA policymakers and researchers, pharmaceutical companies, and are bringing the voice of the patient.
• 29:46
  SPEAKER_01: So I think that's really great.
• 29:48
  SPEAKER_04: That's fantastic, Martine.
• 29:50
  SPEAKER_04: That is really great.
• 29:51
  SPEAKER_04: And to have a made in Canada approach, that's fantastic that your teammate went to attend that and you thought to bring it forward.
• 29:59
  SPEAKER_01: I just want to say what's important as a leadership is to take risks, in a sense, calculated risks, listen to your gut, always have that question in your mind: is this gonna improve the lives of patients?
• 30:13
  SPEAKER_01: Is this gonna make a meaningful impact on the system and the community?
• 30:18
  SPEAKER_01: Is it gonna improve our ability to be at the table and to have a strong voice?
• 30:24
  SPEAKER_01: And if the answer is yes, well, it's a good idea to move forward.
• 30:28
  SPEAKER_01: And everything else will fall into place.
• 30:30
  SPEAKER_01: You'll find all of the resources and the time to do what you need to make this into a success.
• 30:36
  SPEAKER_01: So leadership is about listening, having a really good gut feeling, and empowering people around you to implement and move ahead with your strategy and your vision.
• 30:49
  SPEAKER_04: I love that, Martine.
• 30:50
  SPEAKER_04: Thank you for sharing.
• 30:51
  SPEAKER_04: That is really important.
• 30:52
  SPEAKER_04: And for people that are listening that are new to leadership or thinking about that, I think that's really good advice and important to think ahead and look forward with.
• 31:02
  SPEAKER_04: Martine, you and I were recently together on a poster that was a survey of Canadians and it won an award for sex and gender-based analysis.
• 31:12
  SPEAKER_04: And I'm interested in your thoughts as you look ahead as to what you're thinking about our positive moves in the future.
• 31:20
  SPEAKER_04: How important is it that we continue to think about differences and making sure we have diverse voices around the table when we're thinking of clinical research or projects and feedback?
• 31:32
  SPEAKER_01: Well, I think diversity is extremely important because you just look at makeup of our community in our country here in Canada, and you really need to be true to who you are, represent who you are in clinical trials and in research, and therefore doing everything you can to have a very strong diversity sort of program and objective, and actually implement what you say you're going to do is really important.
• 32:01
  SPEAKER_04: I appreciate that very much.
• 32:03
  SPEAKER_04: And what excites you most about the future of Myloma Canada?
• 32:06
  SPEAKER_04: What would you like to share with people?
• 32:08
  SPEAKER_01: There's so much more to do.
• 32:10
  SPEAKER_01: And there is so much more how we can help patients and advocate for changes in policies, increase in research, bring people together that can affect how we do clinical trials and what clinical trials that we do.
• 32:28
  SPEAKER_01: Like what are the important questions that need to be addressed?
• 32:31
  SPEAKER_01: So our focus has always been education, awareness, advocacy, and science and research.
• 32:39
  SPEAKER_01: So right now, our focus is going to be a lot more on research, trying to find ways to increase the funds that we collect through fundraising initiatives, then invest in the right research that is meaningful for patients.
• 32:54
  SPEAKER_01: So we don't do this ourselves.
• 32:57
  SPEAKER_01: We work with a community, a research community that help us identify what are the key important questions that are important for our community.
• 33:06
  SPEAKER_01: They have very important criteria that have been established by patients.
• 33:10
  SPEAKER_01: So we went through a process to look at the patient priority, the research, PSP patient-supported research through the James Lynde Alliance to identify what are the key questions that are important for patients to be addressed in research.
• 33:24
  SPEAKER_01: So it's not us sitting around a table, my team, or some a few patients saying this is what's important.
• 33:29
  SPEAKER_01: It's really a vetted process to identify these key questions.
• 33:33
  SPEAKER_01: So that forms the base of our research strategy.
• 33:37
  SPEAKER_01: And then we, through our fundraising activities, raise money to invite researchers to provide questions or research proposals, and they're evaluated based on very strict peer review criteria.
• 33:52
  SPEAKER_01: And obviously, we like to invest millions of dollars to do research, but we don't have millions of dollars.
• 33:57
  SPEAKER_01: So we do invest a significant amount of money in research through our efforts, but we also look at partners like Leukemia Lymphoma Society of Canada.
• 34:06
  SPEAKER_01: We've invested in research with them, the Ontario Clinical Research Institute.
• 34:11
  SPEAKER_01: We've invested in clinical trials with them.
• 34:14
  SPEAKER_01: So looking at ways that we can partner with other research organizations to address important questions from a patient's perspective.
• 34:22
  SPEAKER_01: So that's where we will want to focus in the next few years.
• 34:25
  SPEAKER_01: We're looking at areas around homegrown CART or so what we call academic CARTEs, which will have a really important place for Canadians who may not have access to a commercial CAR T that could be involved in a clinical trial.
• 34:41
  SPEAKER_01: We don't want to duplicate what's done.
• 34:42
  SPEAKER_01: It's not that we want to invest in a CAR T, a BCMA targeted CART T, which is available on a commercial scale, because that's not gonna be that helpful.
• 34:53
  SPEAKER_01: But there may be some other areas that we can tweak sort of the target on the myeloma cells that in academic research can do.
• 35:00
  SPEAKER_01: So this is something that we would like to explore.
• 35:03
  SPEAKER_01: We're looking to partner with large foundations.
• 35:07
  SPEAKER_01: There's the Paula and Roger Riney Foundation, which is an American foundation that invested millions and millions of dollars in myeloma research.
• 35:15
  SPEAKER_01: So we've had a conversation with them to invest in Canadian research projects.
• 35:22
  SPEAKER_01: So one thing that I've learned is that if you don't ask and if you don't knock on doors with people, and you know the answer is going to be no.
• 35:29
  SPEAKER_01: So you might as well and ask and see what you get.
• 35:32
  SPEAKER_01: And who knows, we may end up with a large clinical trial or research program here in Canada.
• 35:38
  SPEAKER_01: So really that's our focus in terms of research.
• 35:41
  SPEAKER_01: From an education perspective, which we do a lot as mentor, we are very much grassroots.
• 35:46
  SPEAKER_01: We have a number of patient conferences, patient support groups.
• 35:50
  SPEAKER_01: We do all sorts of various activities with our patient community.
• 35:54
  SPEAKER_01: What we found is that our information that we provide to them is top-notch, is the best information that you could possibly get from a patient's perspective.
• 36:02
  SPEAKER_01: But there's a lot of information, and not everybody learns in the same way or wants to receive information in the same way.
• 36:09
  SPEAKER_01: So we need to take a look at how do we personalize the information and look at it from delivering the information at a rate and a level that is consistent and important from the patient's point of view.
• 36:24
  SPEAKER_01: So it's looking at layering information.
• 36:27
  SPEAKER_01: So asking a question, a little bit what Chat GPT does.
• 36:30
  SPEAKER_01: And when you ask a question, it gives you an answer and then it asks you, do you want to know more?
• 36:35
  SPEAKER_01: And you get more information.
• 36:36
  SPEAKER_01: That's a lot of the way that people are learning and want to receive information today.
• 36:41
  SPEAKER_01: So how do we change that approach to be a lot more patient-specific moving forward?
• 36:46
  SPEAKER_01: So that's both on the information provided from a written perspective, but also how do you connect and how does our sort of information specialist provide this directly to the patient during their calls and communications with them?
• 37:00
  SPEAKER_04: That's incredible, Martine.
• 37:01
  SPEAKER_04: And that's a lot going on in the upcoming future.
• 37:05
  SPEAKER_04: I know it's going to be important for you to also take a break amidst all of that work.
• 37:09
  SPEAKER_04: And I understand on the fun front, you have some interesting things going on with Book Club.
• 37:14
  SPEAKER_04: Tell us a little bit about what Book Club means to you and what's currently going on.
• 37:18
  SPEAKER_01: Well, it's totally different from what I do on a day-to-day basis.
• 37:22
  SPEAKER_01: When I spend most of my career in Toronto, I am originally from Montreal, so my background is French.
• 37:29
  SPEAKER_01: But I spent 30 years in Toronto and speaking English all the time and making friends through my children's activity, being soccer, hockey, and all those things.
• 37:39
  SPEAKER_01: But now my kids are gone.
• 37:40
  SPEAKER_01: And I came back to Quebec to my roots to be closer to the team at Myeloma, Canada, because we are located in Montreal.
• 37:48
  SPEAKER_01: And I said, Well, what am I going to do to get connected with our community?
• 37:52
  SPEAKER_01: And so a friend of mine invited me to be part of a book club.
• 37:56
  SPEAKER_01: And these are women that come from very various backgrounds: musician, geologist, a business person, a writer, an engineer.
• 38:06
  SPEAKER_01: And so I was a little bit intimidated at first because my French was pretty rusty.
• 38:12
  SPEAKER_01: And all the books that we were reading were in French, and they were from various international authors, but we read them in French.
• 38:19
  SPEAKER_01: And sometimes we read English authors, and I always like to read the authors in the language that they write a book, but there's been some really interesting books.
• 38:28
  SPEAKER_01: And right now, the book we're reading is called The Elements from John Boyne, who is an Irish writer.
• 38:34
  SPEAKER_01: And what's great about this group is that I learn about various cultures, I learn about various authors.
• 38:42
  SPEAKER_01: A couple of weeks ago, we went on a retreat with our book club, which is really nice.
• 38:46
  SPEAKER_01: So I really enjoy connecting with the community, my friends, making new friends, and in a very different way.
• 38:54
  SPEAKER_04: That's amazing.
• 38:55
  SPEAKER_04: Well, Martine, thank you for this fantastic conversation today about Myloma Canada and what you're doing there, your leadership in broader oncology areas, Canada and globally, and everything that you're looking forward to.
• 39:08
  SPEAKER_04: Thank you for this.
• 39:09
  SPEAKER_04: Thank you, Martine.
• 39:10
  SPEAKER_04: You're very welcome.
• 39:11
  SPEAKER_01: Very nice to have been with you today.
• 39:18
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• 39:24
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• 39:30
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• 39:37
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• 39:41
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• 39:52
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• 40:02
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• 40:04
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