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Rewriting the Rules of Women’s Health: Power, Policy, and Patient Voice · Amplify: A Podcast Powered by Patient Voice Partners

• 0:01
  SPEAKER_03: Welcome to Amplify, Elivating 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 Cordy.
• 0:14
  SPEAKER_00: Together, we're talking with patients, caregivers, and the healthcare changemakers 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 listens.
• 0:42
  SPEAKER_02: What is something that comes to mind to you for today's show?
• 0:46
  SPEAKER_01: Well, I always find it fascinating that when a woman face challenges in life, we do something about it.
• 0:52
  SPEAKER_01: We don't just sit back as active or passive participants.
• 0:56
  SPEAKER_01: We get in front of it.
• 0:57
  SPEAKER_01: And that's what I'm excited about for today's show.
• 1:00
  SPEAKER_01: Carmen is certainly an example of someone who gets in front of issues when they get thrown at her.
• 1:07
  SPEAKER_02: That is such a thoughtful description.
• 1:09
  SPEAKER_02: And it's the definition of change maker.
• 1:11
  SPEAKER_02: And I love it.
• 1:12
  SPEAKER_02: It's taking information and doing something with it and making change happen to make things better.
• 1:18
  SPEAKER_02: I think that's a perfect description.
• 1:20
  SPEAKER_02: I'd like to welcome Carmen White to today's show.
• 1:23
  SPEAKER_02: Carmen joins us from Edmonton.
• 1:25
  SPEAKER_02: And Carmen, what an interesting background.
• 1:27
  SPEAKER_02: As president of Ripple Enterprises, you do executive coaching for not-for-profit leaders, and you're a health advocate in the space.
• 1:34
  SPEAKER_02: I've enjoyed all the conversations you and I have had about women's health.
• 1:38
  SPEAKER_02: We're going to dive in more today.
• 1:40
  SPEAKER_02: And another note, you actually started Alberta Women's Health Coalition, and that has now pivoted to become Women's Health Coalition of Canada, which is an amazing group that I've been able to, from the sidelines, see some great work happen.
• 1:56
  SPEAKER_02: And I'm interested to hear more about that.
• 1:57
  SPEAKER_02: So, Carmen, welcome to today's show of Amplify.
• 2:00
  SPEAKER_02: We're going to dive in to talk about women's health and the rules and changes that are happening.
• 2:06
  SPEAKER_02: And I'd like to start by having you tell us a little bit more about yourself.
• 2:11
  SPEAKER_04: Thank you for including me in the show today, Ursula and Anne-Marie.
• 2:14
  SPEAKER_04: I'm always excited to talk about women's health.
• 2:17
  SPEAKER_04: It has to be a priority for all of us and for people who care about women.
• 2:22
  SPEAKER_04: My background is I have worked in the private sector, the charitable and nonprofit sector.
• 2:30
  SPEAKER_04: I have spent much of my career on advisory councils for government.
• 2:35
  SPEAKER_04: And so have seen the system from through multiple lenses and have been able to take that experience and use it to advocate for, in this case, women's health.
• 2:48
  SPEAKER_04: I've also been involved in seniors and disabilities and marginalized populations.
• 2:53
  SPEAKER_04: And so I think that throughout my career, it's always been about making individuals stronger, empowering people, and making the world we live in more inclusive.
• 3:05
  SPEAKER_04: I'm just doing that with some focus now on women's health in a very intentional way.
• 3:10
  SPEAKER_02: Well, I really appreciate you sharing that.
• 3:12
  SPEAKER_02: And it's disturbing that women's health is still so fragmented and underrecognized as really a system-wide issue.
• 3:21
  SPEAKER_02: I would like you to share a little bit more with us as to why it continues to be such an invisible gap still at this point in time.
• 3:30
  SPEAKER_04: I appreciate that you used the word invisible because nobody let this happen on purpose.
• 3:36
  SPEAKER_04: It just happened.
• 3:38
  SPEAKER_04: There was a time when women primarily stayed home, they weren't in the workforce.
• 3:43
  SPEAKER_04: I guess creating the next generation was a high priority and having healthy babies.
• 3:49
  SPEAKER_04: And so the system was built on that.
• 3:52
  SPEAKER_04: And so the reproductive health issues have always been top of mind when women experience or report symptoms and a sense of not being well.
• 4:04
  SPEAKER_04: It's dismissed as let's use the word hysteria, which is the root of hysterectomy.
• 4:10
  SPEAKER_04: They think if they remove our uterus, then we're all just fine because then we're more like men.
• 4:15
  SPEAKER_04: But nobody let it happen on purpose.
• 4:18
  SPEAKER_04: It has just evolved this way.
• 4:20
  SPEAKER_04: Men had to be healthy because they were the breadwinners.
• 4:24
  SPEAKER_04: They were the builders of our world.
• 4:26
  SPEAKER_04: They were the brains of our universities, and they were in the corner office of every industry that was evolving.
• 4:34
  SPEAKER_04: But that's not the way it is today.
• 4:36
  SPEAKER_04: And so now, I think more than ever, all the systems are recognizing we've got to catch up.
• 4:42
  SPEAKER_04: But we've got these Goliath systems that are so locked in policies and practices and norms that they're very hard to disrupt.
• 4:53
  SPEAKER_04: But we can disrupt them by running alongside and introducing new systems that can begin to create some balance.
• 5:01
  SPEAKER_04: And that's what we hope to do.
• 5:02
  SPEAKER_01: That's really interesting.
• 5:03
  SPEAKER_01: On a previous episode, we heard for the first time a term that I'd never heard of it.
• 5:09
  SPEAKER_01: I don't know if you had Ursula bikini medicine.
• 5:12
  SPEAKER_01: No, first for me.
• 5:14
  SPEAKER_01: Right.
• 5:14
  SPEAKER_01: Where the focus really being on our reproductive organs and really discounting the entire biology that is quite different in women.
• 5:24
  SPEAKER_01: So I'm just curious, had you heard of this term before?
• 5:27
  SPEAKER_01: And how do you think about this more as an entire system as opposed to just one system within a woman's body?
• 5:35
  SPEAKER_04: So that's very interesting in that.
• 5:37
  SPEAKER_04: So Canada had a women's health strategy in 2010, and it was very driven by reproductive health.
• 5:43
  SPEAKER_04: And so now, as we are trying to put a law in place that will modernize and integrate and include and all of those other things, what's interesting is we still have to think about those reproductive organs.
• 5:58
  SPEAKER_04: We have to think about the life stages that women go through.
• 6:02
  SPEAKER_04: And I think the difference between that term of bikini medicine or reproductive health was it was purpose-driven.
• 6:11
  SPEAKER_04: Women needed to be healthy to reproduce.
• 6:14
  SPEAKER_04: In fact, we're now in a stage where women must be healthy through all the ages and stages, but many of the health conditions they face are being driven because of hormonal changes.
• 6:26
  SPEAKER_04: When they're young, they are going through puberty.
• 6:29
  SPEAKER_04: When they are of childbearing, in a childbearing stage of their life, they're either choosing to have children or not have children.
• 6:37
  SPEAKER_04: And we need to support them through that.
• 6:39
  SPEAKER_04: And then as they go through paramenopause and menopause and postmenopause, some of those conditions you've talked about, Anne-Marie, in terms of systemic impacts, whether it's heart disease, brain health, cardio, like the musculoskeletal health, they are impacted by a woman's cycles, I guess, or stages in producing estrogen or not producing estrogen.
• 7:03
  SPEAKER_04: And so still very much driven by those reproductive organs, but we must look at them as much more far-reaching than just reproductive health.
• 7:12
  SPEAKER_04: And that's the shift.
• 7:14
  SPEAKER_04: Interesting.
• 7:15
  SPEAKER_02: I love the holistic look at what's happening, removing any type of blame.
• 7:21
  SPEAKER_02: This is the fault of your uterus, which is something I've heard before, but looking at integration of let's look at what the system is happening.
• 7:30
  SPEAKER_02: So thank you for sharing that and appreciate not having this continue to be an invisible gap in women's health.
• 7:37
  SPEAKER_02: Carmen, can you take us back to when things started on the coalition front with the forming of Alberta, the movement towards Canada, and what was happening?
• 7:46
  SPEAKER_02: Because this is a very exciting change and information share with regards to women and men with across the country.
• 7:54
  SPEAKER_04: Thank you for that opportunity because the Women's Health Coalition did start in Alberta.
• 7:58
  SPEAKER_04: It was the Women's Health Coalition of Alberta, because I attended a uterine fibroids forum in Toronto with patients and doctors.
• 8:09
  SPEAKER_04: And the one thing in common that all of those 30 plus women had was that they had all waited 10 years or more to get a diagnosis, to get treatment, to have their pain and their symptoms and their irregular bleeding taken seriously.
• 8:26
  SPEAKER_04: It was just, as I said, treated as hysteria.
• 8:29
  SPEAKER_04: And I had never experienced that in my life.
• 8:31
  SPEAKER_04: I have had chronic health issues, autoimmune conditions, but I've always had the ability to navigate the health system.
• 8:39
  SPEAKER_04: These women couldn't push through it with what they were facing.
• 8:43
  SPEAKER_04: And as a result of that, we looked at starting a uterine fibroids national group.
• 8:47
  SPEAKER_04: And I was looking into it, and I realized just how weak the women's health system was.
• 8:54
  SPEAKER_04: And so another patient organization wasn't going to fix that problem.
• 8:58
  SPEAKER_04: It was systemic, it was cultural, it was biased, it was misogynistic, it was based on funding.
• 9:05
  SPEAKER_04: There were so many things that needed to be talked about.
• 9:10
  SPEAKER_04: And so I started the Women's Health Coalition in Alberta as an advocacy organization because that's my home turf.
• 9:16
  SPEAKER_04: And if it was, if I was going to create a practice model that could be scaled across the country, I wanted to do it someplace where I had brand, I had reputation, I had connections, and I needed to investigate the current state.
• 9:30
  SPEAKER_04: But it was overwhelmingly obvious that this was a systemic issue that was affecting women all across Canada.
• 9:38
  SPEAKER_04: And so knew very quickly it was going to be a Canadian organization.
• 9:42
  SPEAKER_04: It was just a matter of time.
• 9:44
  SPEAKER_04: And it happened really fast, actually.
• 9:46
  SPEAKER_02: It did happen really fast.
• 9:48
  SPEAKER_02: And congratulations on that.
• 9:50
  SPEAKER_04: And what do you attribute that to?
• 9:53
  SPEAKER_04: A couple of things.
• 9:54
  SPEAKER_04: One is good timing.
• 9:56
  SPEAKER_04: So I started the Women's Health Coalition of Alberta in 2017.
• 9:59
  SPEAKER_04: By 2020, we were going national.
• 10:01
  SPEAKER_04: But the reason for that is very quickly with the connections in Alberta, they were all connected to national systems.
• 10:07
  SPEAKER_04: So that is one of the beauty of Canada's health systems.
• 10:11
  SPEAKER_04: It's both fragmented and connected in that everybody knows somebody, but it was about bringing together those collective voices, those collective experiences, and creating a united approach.
• 10:25
  SPEAKER_04: And so I think one of the things that's very different about the Women's Health Coalition is we're not a patient association.
• 10:30
  SPEAKER_04: We are an advocacy organization.
• 10:32
  SPEAKER_04: We are a collaborator.
• 10:34
  SPEAKER_04: Collaboration is one of the key values of our organization.
• 10:38
  SPEAKER_04: We curate, we don't create, we complement, we don't compete.
• 10:43
  SPEAKER_04: And so we created an environment where we could take out the risk of sharing resources, the risk of having that common voice.
• 10:52
  SPEAKER_04: We took turf and territory out of it, and we all started talking about the same thing.
• 10:58
  SPEAKER_04: And that was that it was time for change in women's health.
• 11:01
  SPEAKER_02: I really appreciate you sharing that differential because it's a big misunderstanding within the ecosystem that, oh, this is a patient group.
• 11:09
  SPEAKER_02: No, not for profit is not the same as a patient group.
• 11:12
  SPEAKER_02: And you very clearly articulate not even not for profit, although I know that's what the group is, but an advocacy organization, which is really interesting and advocacy to influence and changing the system.
• 11:24
  SPEAKER_02: What does that mean to you?
• 11:26
  SPEAKER_02: And how does that play into the policy realm?
• 11:29
  SPEAKER_04: So it's not obvious what being an advocacy organization means until we actually hit the ground.
• 11:36
  SPEAKER_04: And so when you look at our membership, our membership is businesses, nonprofit groups, individual members, and healthcare professionals.
• 11:45
  SPEAKER_04: That makes us different.
• 11:46
  SPEAKER_04: We're not driven by a group of healthcare professionals, all work in one specialty saying we need to do better for our patients.
• 11:54
  SPEAKER_04: We're not a patient association doing peer support.
• 11:57
  SPEAKER_04: We publish papers that investigate the current system state of women's experiences.
• 12:05
  SPEAKER_04: And it's always based on an advocacy call to action.
• 12:09
  SPEAKER_04: It's pointing out weaknesses in the system, the conditions of the symptoms or lived experiences of particular conditions.
• 12:18
  SPEAKER_04: There are patient associations and healthcare professional associations that are expert in that space.
• 12:24
  SPEAKER_04: What we want to be is an expert in turning the current conditions into social advocacy, into system change.
• 12:33
  SPEAKER_04: We also, one of the big things is we're not trying to change the world.
• 12:37
  SPEAKER_04: We're trying to change one system at a time.
• 12:39
  SPEAKER_04: And we're very intentional in bringing the private sector, public sector, and government together for integrated solutions that are sustainable.
• 12:47
  SPEAKER_04: And, you know, I don't think that there's an easy understanding of what's an advocacy group versus a patient group, except for in the actions that we create and the systems that change.
• 12:57
  SPEAKER_04: It's not in the headlines.
• 12:59
  SPEAKER_01: One of the things I really appreciate about what you've described here is this sense of bringing different stakeholders together.
• 13:07
  SPEAKER_01: So not just one perspective, but in bringing different stakeholders together, you get this fulsome perspective.
• 13:14
  SPEAKER_01: And then that leads to something else that I think is really important you mentioned.
• 13:18
  SPEAKER_01: And it's this idea that not competing with one another, no turf.
• 13:23
  SPEAKER_01: And for a policymaker, I imagine that is a gift that you can hand to a policymaker when you've got stakeholders who have come together and worked out what does this look like from a system perspective?
• 13:34
  SPEAKER_01: And they don't have to just go and figure it out for themselves.
• 13:37
  SPEAKER_01: Has that been your experience?
• 13:40
  SPEAKER_04: That is completely our experience.
• 13:42
  SPEAKER_04: And it is the core driver behind Bill S243 and the National Framework for Women's Health in Canada.
• 13:49
  SPEAKER_04: What really has given that traction is that we were recently in Ottawa in February for Days on the Hill.
• 13:56
  SPEAKER_04: That was actually a week on the hill.
• 13:58
  SPEAKER_04: But we had 200 advocates and they represented 30 different organizations that represented 50 organizations that were speaking with the over 200 organizations that we're all connected with.
• 14:10
  SPEAKER_04: But each one of them, we had meetings with MPs and ministers and senators and senior administration staff that had five to eight people in them, all giving different lived experiences from the LGBTQ2S community, the South Asian population, indigenous populations, midwifery, pelvic physiotherapists.
• 14:33
  SPEAKER_04: I mean, it was the whole gamut.
• 14:34
  SPEAKER_04: And again, we demonstrated this wasn't about turf and territory.
• 14:38
  SPEAKER_04: This was about getting a law in place to ensure that women's health would never be left behind again in Canada.
• 14:45
  SPEAKER_04: And again, that's different.
• 14:47
  SPEAKER_04: That's advocacy.
• 14:48
  SPEAKER_04: We're not just asking for more money.
• 14:50
  SPEAKER_04: We're not asking you to support one disease.
• 14:53
  SPEAKER_04: We're asking you to support half the population.
• 14:56
  SPEAKER_04: We're asking you to recognize the economic advantage of investing in women and women's health and women's health research and their entrepreneurial spirit to solve women's health gaps and serve our economy and serve women.
• 15:13
  SPEAKER_04: And so it just completely changed the narrative when evidence was brought forward in a first voice from many different stakeholders all at the same time.
• 15:23
  SPEAKER_04: And that is why they're trusting our support to this bill and we're seen as credible because it is the voices of Canadians.
• 15:33
  SPEAKER_02: So, Carmen, this is amazing.
• 15:34
  SPEAKER_02: And we know, and Marie and I first hand how challenging it can be to bring together diverse stakeholders to work on a common area, but you've done it successfully to a beautiful level.
• 15:47
  SPEAKER_02: Can you unpack a little bit more for a guest?
• 15:50
  SPEAKER_02: What is Bill S243?
• 15:53
  SPEAKER_02: What does it mean?
• 15:54
  SPEAKER_02: What does it stand for?
• 15:55
  SPEAKER_02: And where is it at right now?
• 15:57
  SPEAKER_04: So Bill S243 is a legal framework for women's health in Canada.
• 16:03
  SPEAKER_04: And the important word in that phrase is legal.
• 16:06
  SPEAKER_04: You can have a women's health strategy, and we did have one in Canada in 1999.
• 16:12
  SPEAKER_04: And it wasn't updated ever, and it was very focused on reproductive health.
• 16:18
  SPEAKER_04: And then in 2010, the government published a report about all the great things they had done against that strategy.
• 16:25
  SPEAKER_04: And then they discontinued funding to the Canadian Women's Health Network and they really cut the funding to CIHR for women's health research.
• 16:34
  SPEAKER_04: So you can see they treated it like a program.
• 16:36
  SPEAKER_04: One and done, we did a great job.
• 16:38
  SPEAKER_04: We're good now.
• 16:39
  SPEAKER_04: That can just sit there on the shelf.
• 16:40
  SPEAKER_04: The difference between Bill S243 is that it's a legal framework.
• 16:44
  SPEAKER_04: Yes, it has many of the components that other countries are have put into their frameworks and we're learning from that, but it also has accountability requirements.
• 16:54
  SPEAKER_04: It must engage stakeholders, it must engage the private sector, it must engage provincial and territorial health government systems because that's where it's delivered.
• 17:04
  SPEAKER_04: It must have a strategy put on the table within one year that has come from consultation.
• 17:10
  SPEAKER_04: It must be updated every five years.
• 17:13
  SPEAKER_04: Women's health must be on the shared national and provincial health agendas every time those meetings are convened.
• 17:20
  SPEAKER_04: So the difference between a legal framework and a strategy or a policy or a program or a budget allocation is the accountability.
• 17:29
  SPEAKER_04: Now, every one of those organizations that we're working with and the ones we may work with over the next year as this moves forward have something to anchor to.
• 17:38
  SPEAKER_04: They can say to the government, in accordance with the framework for women's health in Canada, we ask that you do this.
• 17:45
  SPEAKER_04: It also gives the government a framework by which to make budget decisions, policy decisions, practice decisions.
• 17:53
  SPEAKER_04: And so, but the difference is it's a legal framework.
• 17:56
  SPEAKER_04: That's what's setting this apart.
• 17:58
  SPEAKER_04: And as far as we know, it's the only comprehensive law like this in the world for women's health.
• 18:06
  SPEAKER_04: Now, we could be proved wrong, and there are other strategies and there are other policies, but we haven't found any evidence of something being elevated to this level that will supersede any government change, any budget priority change, any slump in oil prices, any provincial government disputes, if you want to call them, it will survive all of that.
• 18:30
  SPEAKER_04: That's the difference between a law and a program.
• 18:32
  SPEAKER_02: Carmin, this is incredible.
• 18:33
  SPEAKER_02: It's not that we're always first in Canada, let's be honest.
• 18:36
  SPEAKER_02: Sometimes in healthcare we're a little bit slow.
• 18:39
  SPEAKER_02: We're following, we're not first on innovation, we're not first on reimbursement.
• 18:43
  SPEAKER_02: So to have something be a first in Canada on the women's health front is incredibly exciting.
• 18:48
  SPEAKER_02: And that's interesting.
• 18:49
  SPEAKER_02: It sounds like the team had done some research to see what else is out there.
• 18:53
  SPEAKER_02: It's more difficult to pioneer because you can't reference the framework elsewhere.
• 18:58
  SPEAKER_02: So that's incredible groundbreaking work to move this forward.
• 19:02
  SPEAKER_04: We are learning from other countries in terms of the components of the framework, because there are some countries doing it really well and it's not Canada.
• 19:10
  SPEAKER_04: We're 64th in the world right now.
• 19:12
  SPEAKER_04: Wow, that's not good enough.
• 19:15
  SPEAKER_04: But we also learned from something Canada did it five, six years ago, maybe it's seven years ago now.
• 19:20
  SPEAKER_04: They created the Diabetes Act, which again was embedded in law.
• 19:25
  SPEAKER_04: And so it was a, again, a legal framework for diabetes in Canada.
• 19:31
  SPEAKER_04: And so we knew that there was experience with the administration and even some of the elected officials in terms of introducing this kind of enabling law.
• 19:42
  SPEAKER_04: Enabling law is normally resisted, but Canada had proved they could do it.
• 19:48
  SPEAKER_04: We wanted them, we needed them to do it again on a much bigger scale.
• 19:52
  SPEAKER_04: And so, yeah, I wanted to provide that context.
• 19:55
  SPEAKER_04: Thank you for adding that.
• 19:56
  SPEAKER_02: What an action-oriented word.
• 19:59
  SPEAKER_04: Yeah, enabling legislation is very thoughtful and often avoided, but it seems to be the right time.
• 20:06
  SPEAKER_01: Thank you for that.
• 20:07
  SPEAKER_01: I don't know if this is part of your area of expertise, but as I'm listening to you, a couple of things popped into my mind about some of the benefits of the work that you're doing.
• 20:16
  SPEAKER_01: I always sort of go to what does the world look like when this legislation is passed and things are happening.
• 20:23
  SPEAKER_01: I think about healthy women, healthy families, right?
• 20:27
  SPEAKER_01: When we know that when women are strong, families are strong.
• 20:30
  SPEAKER_01: I think about the role women are taking in leadership across organizations and on boards and whatnot.
• 20:37
  SPEAKER_01: So again, healthy women, healthy, healthy, strong, healthy economy workplaces.
• 20:44
  SPEAKER_01: Exactly, and workplaces.
• 20:45
  SPEAKER_01: And then the idea of we talk about the pressures on the healthcare system and on healthcare providers, women provide the majority of paid and unpaid caregiving.
• 20:56
  SPEAKER_01: So again, healthy women, healthy, healthy societies.
• 21:00
  SPEAKER_01: Am I making some leaps here?
• 21:02
  SPEAKER_01: Or is this part of how you're thinking about what the future looks like?
• 21:06
  SPEAKER_04: It's all of those things.
• 21:08
  SPEAKER_04: The bill was originally written as a women's health and economic prosperity bill.
• 21:13
  SPEAKER_04: And then we didn't want to dilute the women's health focus, but there's no question that economic component is there.
• 21:21
  SPEAKER_04: And if our system was more efficient and women didn't leave the workplace because of menopause symptom management, if they didn't have to leave the workplace because of caregiver responsibilities, again, because of an unmanaged health system.
• 21:37
  SPEAKER_04: And many of the caregiver responsibilities are often for women because they live longer.
• 21:42
  SPEAKER_04: So it's for more likely to be your aging mother than your aging father.
• 21:47
  SPEAKER_04: And so there's$37 billion per year that could be realized if we elevate women's health and keep families stronger because women are.
• 22:00
  SPEAKER_04: Healthier, if women can live longer, healthier, because right now they live longer than men, but live less healthy.
• 22:06
  SPEAKER_04: And that's just the system efficiencies and workforce productivity losses.
• 22:11
  SPEAKER_04: And that does not take into account the opportunity for women-led businesses, health-focused businesses, which is incredibly on the rise as well.
• 22:20
  SPEAKER_04: And we need to enable that as well.
• 22:23
  SPEAKER_04: The other part of this is about women's self-advocacy, because the system isn't going to catch up fast enough unless women demand more.
• 22:31
  SPEAKER_04: So they need to demand more in all those areas that you described, Anne-Marie.
• 22:36
  SPEAKER_04: They have to understand what is available to them and then poke at the system to give it to them because it's probably there.
• 22:44
  SPEAKER_04: And this bill will ensure it is there.
• 22:46
  SPEAKER_04: And if it's not there, it will give the nonprofit organizations and healthcare community a place to open up a conversation with government provincially or federally to make sure it's there.
• 22:58
  SPEAKER_04: Fascinating.
• 22:59
  SPEAKER_02: That's incredible.
• 23:00
  SPEAKER_02: And curious, Carmen, as we think about all of this lived experience from women as a driver of change moving this forward and knowing that you pull together so many diverse stakeholders to, as you said, do the research.
• 23:14
  SPEAKER_02: What else is happening globally, even though there isn't a framework?
• 23:17
  SPEAKER_02: What else is happening that we can learn from?
• 23:19
  SPEAKER_02: And what was past things in Canada?
• 23:21
  SPEAKER_02: You mentioned the diabetes framework.
• 23:23
  SPEAKER_02: Can you share with our listeners what does good air quotes, what does good patient engagement, what does engagement look like?
• 23:30
  SPEAKER_02: How did you capture all of the voices from these different groups as you pull this all together?
• 23:36
  SPEAKER_04: So the patient voice in this is representative from the organizations we brought in.
• 23:42
  SPEAKER_04: So they're the ones that are presenting the current state of barriers, gaps, and biases for each of the areas that they represent.
• 23:51
  SPEAKER_04: And I don't honestly know what the number of those voices are.
• 23:55
  SPEAKER_04: As we go through the next phase of supporting the bill, we want to make sure that women tell their own stories in the first person, whether they're doing it on social, whether they're participating in podcasts or doing news things or the people, the women who are experiencing these health gaps need to tell their story in the first person in a very public way.
• 24:18
  SPEAKER_04: Women's health coming up May 4th to 10th.
• 24:21
  SPEAKER_04: And we will be convening meetings in major cities all across Canada and inviting elected officials to come forward, just like we did at the Days on the Hill with the organizations representing their members.
• 24:33
  SPEAKER_04: We will do that in the first person in cities all across Canada.
• 24:37
  SPEAKER_04: And we need the people who are experiencing these health system challenges to share them, their elected officials who are going to vote yes or no on bill S243.
• 24:49
  SPEAKER_04: And I think another thing that's important is we use the term patience too liberally.
• 24:54
  SPEAKER_04: Women, if we want to get into preventative health and primary care, it's often before the individual is a patience.
• 25:02
  SPEAKER_04: They need to manage their health proactively, their wellness proactively.
• 25:06
  SPEAKER_04: They need to be ready for what is coming next.
• 25:10
  SPEAKER_04: And so it's people with a uterus, it's people with however you want to describe yourself, but it's half the population is female.
• 25:21
  SPEAKER_04: And we need those female stories brought forward in terms of the system experiences that they're having.
• 25:29
  SPEAKER_04: And they may not be as a patient, even as Anne-Marie described, they may not be experienced, their experience as a patient, but they are their experiences as a citizen.
• 25:38
  SPEAKER_04: And so they need to be talking about why women's health matters for Canada.
• 25:43
  SPEAKER_02: Kermin, I think that's absolutely fascinating.
• 25:45
  SPEAKER_02: And we've done a number of projects where language really matters.
• 25:48
  SPEAKER_02: I love the proactive approach.
• 25:50
  SPEAKER_02: People don't necessarily understand or relate to a label.
• 25:54
  SPEAKER_02: Women are often caregivers.
• 25:56
  SPEAKER_02: We did a project.
• 25:57
  SPEAKER_02: We asked people, are you a caregiver?
• 25:58
  SPEAKER_02: A number of people picked other.
• 26:00
  SPEAKER_02: I'm not sure I'm a caregiver.
• 26:02
  SPEAKER_02: I'm an other.
• 26:03
  SPEAKER_02: I'm a spouse.
• 26:03
  SPEAKER_02: I'm a child.
• 26:04
  SPEAKER_02: I'm a friend.
• 26:05
  SPEAKER_02: They could have called themselves caregiver.
• 26:07
  SPEAKER_02: But that permission to know it's okay, I fit into this area or I want to fit into this area looks different for different people.
• 26:14
  SPEAKER_02: And I love the concept where unfortunately prevention is the one thing that falls off the table when we're really busy, right?
• 26:21
  SPEAKER_02: It's like, what's the fire that I need to deal with today?
• 26:23
  SPEAKER_02: And what does this look like?
• 26:24
  SPEAKER_02: And the permission to take a step back and for everybody to think about what does this mean tomorrow, to your point, for women to prepare when they are wearing that patient or person with lived experience hat, whether it be direct disease management or a caregiver is so important.
• 26:42
  SPEAKER_02: If you could share with everybody listening, we have a diverse group that listens to this.
• 26:46
  SPEAKER_02: As you know, we interview change makers in the ecosystem and people can share personal disease journeys that they have, as well as amazing things happening within the system.
• 26:55
  SPEAKER_02: What would be your call to action?
• 26:57
  SPEAKER_02: Things you would encourage people to do if they want to be able to take part and support more of this bill and the work that's happening within Canada right now.
• 27:06
  SPEAKER_02: Where would you direct them?
• 27:08
  SPEAKER_04: Two very easy things.
• 27:09
  SPEAKER_04: One is follow hashtag bill s243 on all social and share and comment and tag your local official if you know who they are so that they know that you, their constituent, you're a voting constituent in the area where you live.
• 27:26
  SPEAKER_04: Make sure your elected official knows that this matters to you.
• 27:30
  SPEAKER_04: You can write a letter to your senator, to the MP in your area.
• 27:33
  SPEAKER_04: Those are the simple things.
• 27:35
  SPEAKER_04: Join an event that's going on in your area, listen to a podcast like this, and then share it.
• 27:41
  SPEAKER_04: Amplification is key.
• 27:43
  SPEAKER_04: So I love that your podcast is called Amplify.
• 27:47
  SPEAKER_04: We actually had an MP say, this doesn't seem to be very important at the constituency level yet.
• 27:54
  SPEAKER_04: Is that coming?
• 27:56
  SPEAKER_04: And now we knew that we needed to do things in order, get first reading done, second reading done, so that there was some socializing of the bill.
• 28:05
  SPEAKER_04: Then we went to Ottawa, as I described, this whole voices of many Canadians there from all across Canada.
• 28:11
  SPEAKER_04: And there was awareness.
• 28:12
  SPEAKER_04: Well, now we're doing the grassroots campaign.
• 28:15
  SPEAKER_04: And I refer to this often as this is women and people who care about women's bra-burning moment of this century.
• 28:25
  SPEAKER_04: Because we need to all be standing up for women's health.
• 28:28
  SPEAKER_04: I have many men say to me, I wish my wife could speak as boldly as you do about how she's feeling, about her period, about painful sex, about but but we've made those conversations uncomfortable.
• 28:42
  SPEAKER_04: It's time to be more comfortable.
• 28:45
  SPEAKER_02: I don't think that many people will necessarily have heard of this ahead of time.
• 28:51
  SPEAKER_02: Like I've learned a lot today.
• 28:52
  SPEAKER_02: And the whole point is awareness.
• 28:54
  SPEAKER_02: Even around the word advocacy, we've had many conversations.
• 28:58
  SPEAKER_02: That means different things to different people, but being able to share information so people can access it is information is powerful and it helps people, including women, take better care and to your point prepare for what could be coming down the road.
• 29:13
  SPEAKER_02: Resiliency is like a skill set that at times is undervalued.
• 29:17
  SPEAKER_02: And if it's a skill set, it's also something can be strengthened and planned for and prepped and practiced and built a little bit bigger.
• 29:24
  SPEAKER_02: I like that movie with the superpower where she can project to protect when she had to practice the projection to protect everybody under the shield.
• 29:32
  SPEAKER_02: And I was like, I think of that when I think of resiliency.
• 29:35
  SPEAKER_02: Like if it's a superpower, how is it extended?
• 29:37
  SPEAKER_02: So that shield can be a bit broader.
• 29:39
  SPEAKER_02: But, anyways, that's on the movie front.
• 29:41
  SPEAKER_01: Well, I'm definitely going to send a letter off to my MP.
• 29:45
  SPEAKER_01: And interesting that my MPP happens to be the Ontario Minister of Health as well.
• 29:51
  SPEAKER_01: Perfect.
• 29:51
  SPEAKER_01: She has both.
• 29:52
  SPEAKER_01: So I'm going to reach out to her as well.
• 29:55
  SPEAKER_01: And to lots of the that belong to a number of women's groups in the area, and I'll be sharing this with them as well.
• 30:02
  SPEAKER_04: We're asking people to host events during Women's Health Week so that we have that concentrated.
• 30:08
  SPEAKER_04: The bill should be at a critical stage during Women's Health Week.
• 30:12
  SPEAKER_04: Either it's about to be moved into parliament.
• 30:14
  SPEAKER_04: So where it is right now.
• 30:17
  SPEAKER_04: So the bill just had a second reading.
• 30:19
  SPEAKER_04: So it had first reading in December, then second reading in February, and now another second reading in the Senate just last week on Thursday, and it got referred to the SOC committee.
• 30:31
  SPEAKER_04: So it had debate and went to the SOCE committee.
• 30:35
  SPEAKER_04: And so Parliament, when we had our days on the Hill, members of Parliament and the senior staff, they're in a hurry to get this into parliament.
• 30:45
  SPEAKER_04: This is a good news story for Canada.
• 30:47
  SPEAKER_04: Canada has a lot of controversial, conflicting issues and that to deal with right now.
• 30:53
  SPEAKER_04: This is good for Canada.
• 30:54
  SPEAKER_04: It's a nonpartisan bill.
• 30:56
  SPEAKER_04: It is being embraced by all levels.
• 30:58
  SPEAKER_04: There are smart questions being asked, but nobody's saying, I don't agree at this point.
• 31:04
  SPEAKER_04: And so Parliament's in a hurry to get it into Parliament because it's in Senate.
• 31:09
  SPEAKER_04: It has to go through committee and then it has to go through third reading and vote.
• 31:13
  SPEAKER_04: And if all the stars lined up in May or very first part of June, there could potentially be first reading in Parliament, which is this pace for a new bill is unheard of.
• 31:26
  SPEAKER_04: Everything that's happened with this bill so far is unheard of.
• 31:30
  SPEAKER_04: And so it could be this spring, right on the heels of or right during Women's Health Week, that next major big step for Bill S243 could be happening.
• 31:42
  SPEAKER_04: So we're really encouraging communities and nonprofit organizations and service clubs and healthcare professional associations and every woman and person who cares about women to be loud, bold, proud, honest, authentic during women's health week in some way.
• 31:59
  SPEAKER_04: So even hosting a staff meeting during women's health week and having a moment to say we support Bill S243 and putting that out on your social, it's not even hard to do.
• 32:11
  SPEAKER_04: You're having a meeting anyways.
• 32:13
  SPEAKER_04: Record that piece and have all the thumbs up streaming on the video recording and saying we support, we support women, we support Bill S243.
• 32:23
  SPEAKER_04: So we're trying to make sure that there's one big broad burning moment during that women's health week that will be indisputable evidence that Canadians care about women's health.
• 32:35
  SPEAKER_02: Well, Carmen, I want to say thank you for sharing with everybody not only what's happening, but the direction as to what they can do about it.
• 32:43
  SPEAKER_02: And I think that is really helpful because sometimes having had many, many conversations over many, many years with people that want to get more involved, they don't know the how and the what to do.
• 32:54
  SPEAKER_02: And I think you've very clearly articulated what they can do to help support this movement, which is just incredible.
• 32:59
  SPEAKER_02: On a final note, really interested in what you're gonna do to relax and unwind yourself personally when you can celebrate and this bill is finally passed.
• 33:09
  SPEAKER_02: So over to you.
• 33:10
  SPEAKER_02: What does relaxation look like in a little bit?
• 33:13
  SPEAKER_04: So I am truly looking forward to taking helping to take this bill over the finish line because it will also be the start of the next phase of my life, which will be downsizing my involvement with Women's Health Coalition.
• 33:28
  SPEAKER_04: So bringing in a new president.
• 33:30
  SPEAKER_04: I'll always be founder, but letting the new leadership come in.
• 33:34
  SPEAKER_04: And then I'm going to spend three weeks in Paris.
• 33:36
  SPEAKER_04: Um fantastic.
• 33:38
  SPEAKER_04: Between now and then, I'm learning French, and I'm gonna go three weeks to a month, be in Paris, live like a Parisian.
• 33:45
  SPEAKER_04: I do art, do culture, visit museums, and not think about responsibilities for women's health.
• 33:52
  SPEAKER_02: Wow, that's beautiful.
• 33:53
  SPEAKER_02: Baguette and cheese around the corner.
• 33:55
  SPEAKER_02: My sister thought I was joking when I said I eat a lot when I'm there, but it's fantastic.
• 34:00
  SPEAKER_02: I wish you the very best in the next steps and the entire team and community in this massive movement.
• 34:06
  SPEAKER_02: This is fabulously incredible.
• 34:09
  SPEAKER_02: And I'm delighted for you around the corner to have that celebration of relaxation in Paris.
• 34:15
  SPEAKER_02: That's a wonderful, wonderful moment around the corner.
• 34:18
  SPEAKER_02: Thank you for joining us today on Amplify, Carmen, in this fantastic conversation.
• 34:22
  SPEAKER_04: Thank you for having me.
• 34:23
  SPEAKER_04: It was a delight to meet the team.
• 34:29
  SPEAKER_02: Thanks for tuning in to Amplify, a podcast powered by Patient Voice Partners.
• 34:35
  SPEAKER_02: If today's story moved you, share it, leave a review, and help us amplify more voices.
• 34:41
  SPEAKER_00: If you're a patient or caregiver, you can join Patient Voice Connect to share your experience and help shape research and care.
• 34:48
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• 34:52
  SPEAKER_02: If you're a clinician, advocate, innovator, or system leader, and you'd like to be a guest on the show or share a story, reach out directly through the contact form on that same page.
• 35:03
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• 35:06
  SPEAKER_00: Follow us on LinkedIn at Patient VoicePartners for updates, behind the scenes content, and to meet our upcoming guests.
• 35:13
  SPEAKER_02: Until next time, stay connected.
• 35:15
  SPEAKER_02: Your voice matters.