From Engagement to Inclusivity: A Conversation with Anne Marie Hayes

 

 

In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Brent Korte welcome their very own Patient Voice Partners teammate, Anne Marie Hayes—healthcare professional, advocate, and also one of the co-hosts of Amplify. With over 40 years in respiratory health, Anne Marie has lived through both professional milestones and deeply personal loss. Her story reveals the urgency and heart behind her commitment to patient advocacy and inclusivity.

 

Together, they explore why language matters, how “patient engagement” differs from true “patient inclusivity,” and what it means to bring the full breadth of lived experience into healthcare decision-making. Anne-Marie also shares a powerful real-world example of how co-creation with patients changed regulatory and educational practices in Canada.

 

This is a conversation about curiosity, courage, and creativity—and about moving beyond simply listening to patients, to actually building with them.

 

 

Anne Marie Hayes 

Stakeholder Engagement Specialist 

Anne Marie Hayes began her career as a Respiratory Therapist before becoming a global healthcare leader advocating for humanized health approaches. She has been instrumental in advancing the Patient Inclusion movement and promoting women in leadership. Her diverse experience spans public and private sectors, encompassing frontline patient care, health policy development, organizational leadership, strategic operations, and governance. Anne Marie particularly focuses on promoting health literacy that empowers people living with respiratory conditions, while championing diversity in clinical trials and medicine development. 

Transcript

[00:00:00] Ursula: Welcome to Amplify Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations. I’m Ursula Mann. 

[00:00:13] Brent: And I’m Brent Korte. [00:00:15] Together we’re talking with patients, caregivers, and the healthcare change makers who are listening and taking action. 

[00:00:22] Ursula: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.[00:00:30] 

[00:00:35] Ursula: Brent, I’m excited for our show today. Do you know why? Why 

[00:00:38] Brent: are you excited? Ursula? 

[00:00:39] Ursula: Sometimes you meet someone and they just have magnetic energy. This next person, there was just something there. I [00:00:45] was like, it was a connection. 

[00:00:46] Brent: Honestly, that’s how it was when I met you. 

[00:00:49] Ursula: That’s true. I think every time I ask you a question where I want you to spend time with me, it’s like fingers behind the back.

[00:00:54] Brent: You didn’t pay me to say that either.

[00:00:54] Ursula: That comes later. All good. But really, today we’re joined by Anne Marie Hayes, [00:01:00] and when I met her, there was something special. It was just very magnetic energy and passion and alignment with what we do at Patient Voice Partners. I was really excited to spend more time together.

[00:01:11] Ursula: So I’m excited to join us today. Anne Marie does work at [00:01:15] Patient Voice Partners with us and she’s also gonna be a co-host on Amplify. And I wanna dive deep and learn more about her personal story. 

[00:01:22] Brent: Excellent. Welcome to the show, Anne Marie. 

[00:01:24] Anne Marie: Thank you so much and thank you for those kind words, Ursula.

[00:01:27] Ursula: It was very exciting when it all came [00:01:30] together.

[00:01:30] Ursula: I think at our conference actually, Anne-Marie, is when we first made the connection as to how this was gonna work and we were gonna build it forward. So it’s been exciting times. I’m interested. You had a really broad experience. I’d like you to share a little bit about your [00:01:45] background before I ask you why Patient Voice partners, why do you spend time with us these days?

[00:01:50] Anne Marie: What really attracted me to working with you guys at Patient Voice Partners, aside from the magnetic personalities that everyone has here, it’s really [00:02:00] that opportunity to bring my full life experience, my professional experience, my personal experience. To contribute to something, this movement of amplifying voices that maybe traditionally haven’t been heard and bringing [00:02:15] that full experience to bear without the confines of a corporation.

[00:02:20] Anne Marie: I’ve worked for a number of different companies over the years, and as good as they may be. One has to align their priorities around that of their corporation. [00:02:30] This opportunity, working with this team, really gives me the opportunity to work on the things and priorities that matter to me. 

[00:02:36] Ursula: I love that.

[00:02:37] Ursula: Emory, can you tell us a little bit more about your professional experience? 

[00:02:41] Anne Marie: I started my profession, I’m going to age myself a little bit [00:02:45] here. Over 40 years ago, I became a licensed healthcare professional and dedicated most of my professional career to. Respiratory health. Of course, I’ve worked in different therapeutic areas in different settings, so I started out in hospital, [00:03:00] home care, long-term care, palliative care, many different settings, and most recently I worked in the pharmaceutical industry and it was there that I really started to develop my passion and interest in healthcare advocacy.[00:03:15] 

[00:03:15] Brent: Anne-Marie, you also talked about your personal experiences, if you’re comfortable sharing that. 

[00:03:19] Anne Marie: Yeah, thank you. I’m happy to share. The cruel irony is that I spent over 40 years dedicated to respiratory health, and I have lost [00:03:30] four of the most important people in my life to respiratory disease, and most recently it was my husband.

[00:03:37] Anne Marie: He died from lung cancer. Within three and a half weeks really from first symptom to gone in [00:03:45] three and a half weeks. And it was actually due to a medical error in reading his CAT scan a year and a half earlier. And it made me realize that as far as we’ve come, as much as I feel like I’ve contributed, I’ve got a long way to go.

[00:03:59] Anne Marie: So that’s [00:04:00] really what drives me. 

[00:04:01] Ursula: I’m so sorry for your loss. Anne. Thank you for sharing that incredible heart for experience. I like to think of us here as a family at patient voice partners, but really having people that are meaningful and spending time on things that matter, I think is [00:04:15] important to all of us, which is what drives us every day.

[00:04:17] Ursula: You’ve had quite a journey professionally and personally, and I find sometimes we’re in meetings and you’ll say something and I, I find myself nodding my head, and one of those areas is around shaping the language of patient [00:04:30] voice, patient engagement, patient inclusivity. Some people think they’re the same, you and I think they’re different.

[00:04:36] Ursula: What are your thoughts on what’s the difference and why it matters? 

[00:04:39] Anne Marie: Yes, I’ve heard lots of people use these terms interchangeably, and I think the intention is good, [00:04:45] but at the end of the day, I think the biggest difference is patient engagement is a start. We engage with patients in order to understand their perspectives, what they value, to understand how our work can contribute [00:05:00] to an improved experience for them.

[00:05:03] Anne Marie: Truly being patient inclusive, it goes much beyond. We can engage, but is it effective? And I think when we think about patient inclusivity, it moves us into the effective sort of space. With whom [00:05:15] are we engaging or what purpose are we engaging? When we engage with them and we hear things, what are we doing with that knowledge and that understanding and our, to the decisions that we make and the priorities that we set.

[00:05:28] Anne Marie: I think of patient engagement [00:05:30] as sort of the start, but as we become a patient inclusive organization or team, we’re really embedding everything we do and connecting it to why it matters to the people who are ultimately [00:05:45] going to be impacted by the decisions that we make. 

[00:05:48] Brent: That is a great differentiation, sort of to explain it like I know.

[00:05:51] Brent: Also like you talk about terms and language matters, right? And around even using patient engagement, patient inclusivity, using the [00:06:00] term patient, not everybody likes that, right? Because not just from the perspective of are we engaging the patient, including the patient, that sort of thing, but also everyone else that’s involved, whether it’s caregivers, family members, that sort of thing.

[00:06:13] Brent: So just yeah, your thoughts on that [00:06:15] and how you decide what terminology to use. 

[00:06:18] Anne Marie: It’s a great question. I think of this from two sort of lenses. The first lens is just good communication. So when I sit down to speak with anyone, the first thing I like to [00:06:30] do is check in and ask the question, what is terminology that works for you?

[00:06:35] Anne Marie: And then honor it, right? So it’s simple communication. What are people’s preferences? And not assuming everybody prefers the same thing, but the second lens is [00:06:45] why is it sometimes offensive to people to use the term patient? I think on my own case it’s because it can be reductionist. And what I mean by reductionist is, I’ll give you an example.

[00:06:57] Anne Marie: I actually did sit down with someone one time [00:07:00] who was a nuclear physicist, a mother and a musician, and her comment to me was, why is it when I get a diagnosis that I suddenly am reduced to that particular label [00:07:15] patient? So I think when I think about what terminology I’m gonna use a big part of is an intention.

[00:07:21] Anne Marie: Am I really interested in the story of this person from their entire perspective or only from a limited lens? And I [00:07:30] think most of the time it, it is from the full perspective. So by opening up our language a little bit and inviting people to bring their whole self, what do you prefer? What are the lenses through which you view the world?

[00:07:42] Anne Marie: When we think about it that way, [00:07:45] I think it’s people are much more likely to lean into the language we’re using and maybe gently tell us what their preferences are instead of taking offense. So that’s what I always do. I always start with what do you prefer? And then making sure that I’m taking that broad lens and not [00:08:00] reducing someone to simply that one perspective of their life.

[00:08:04] Ursula: I think that’s so important. Words matter, but intention matters even more. And I am fine with being called patient, but it’s the word that isn’t the [00:08:15] problem. It’s what you said. It’s the lack of power. Word is diminished to not having an equal seat at the table. You recall the days we used to use a visual patient is in the middle, everyone’s around, there’s all these spokes.

[00:08:27] Ursula: I’m like, so we’re poking the person in the middle. [00:08:30] Rather than everyone’s on the same side at the table and maybe they’re sitting side by side. I think there’s some new visuals, which are very interesting that we use more even when we’re talking about patient centricity. But it’s the power equation where you’re advocating for yourself, you’re talking for yourself as a [00:08:45] patient and caregiver and what does that mean, and how are you included and who’s in the driver’s seat?

[00:08:50] Ursula: And excited that I think we’re coming to a better spot to learn. The patient is in the driver’s seat. And working together towards the same goal, but we’re understanding [00:09:00] what that lens of the goal is through the eyes of the patient and the caregiver. 

[00:09:04] Brent: So as I’m hearing you talk, Ursula and also Ann Marie’s comments, it makes me, like you say, putting the power, I guess back to the patient, but it’s empowering at the same time.

[00:09:13] Brent: I really like that. I like that [00:09:15] perspective. And I guess the other thing, not to put the darker cloud on it, but as much as the patient or the person, everything they bring to the table is at the center in a lot of the. Components that are within our healthcare system. It doesn’t feel that way all the time.

[00:09:29] Brent: So just [00:09:30] interested in your thoughts, Anne Marie, like how has that evolved and you’ve been on all sides of the equation. 

[00:09:34] Anne Marie: It’s a really interesting question. I think one of the bigger advances maybe that we’ve had is opening up our perspective on what patient means, right? So we [00:09:45] often talk about patient, small P, patient Big P.

[00:09:48] Anne Marie: When I think about patient big, think about. It’s the person with lived experience, but it’s the person who also, or the people who care for them and are impacted. It [00:10:00] might be patient advocacy groups. So there’s different types of patient perspectives. Patient isn’t one thing. So I think the first piece is for me, where I think we’ve made some strides is understanding patient isn’t one thing.

[00:10:14] Anne Marie: Patient [00:10:15] perspectives aren’t one thing. They’re much broader than that. And that sort of leads to the idea of representation in patient perspectives. So just like we wouldn’t run a clinical trial in a very homogenous group of people, if you want to [00:10:30] apply that science to all of the people living with that condition, you need representativeness.

[00:10:36] Anne Marie: And it’s the same with perspectives. You look at who are the people who are impacted by this particular disease or condition. [00:10:45] How do you start to gain perspectives from multiple points of view so that you get a bigger, more clear picture? Does that make sense? 

[00:10:54] Brent: Yeah, totally. It kind of describes it. What’s going through my head is, okay, how do we translate that to a [00:11:00] lot of the people that are listening to this in your formal roles that whether pharmaceutical companies working with patient groups or our various broad spectrum of people that are listening.

[00:11:09] Brent: Yeah, just your advice to them on how they include that not only in their decision making, but in their [00:11:15] processes. They try and understand the perspective. 

[00:11:17] Anne Marie: I, I think the first thing is just be curious. We often go out to ask patients or people who live with a condition, their perspectives in order to validate what we’re [00:11:30] already doing.

[00:11:31] Anne Marie: To me, what I’d love for people to be thinking about more is being curious, challenging your assumptions a little bit more. Having the courage to ask and challenge your own assumptions and thinking so that we aren’t going down the [00:11:45] wrong road or we aren’t going down a path without considering alternate paths.

[00:11:50] Anne Marie: So that’s what I think where the, ultimately the power, the opportunity lies right now is including multiple perspectives, [00:12:00] very early in our work and systematically throughout our work. So that we’re constantly challenging our assumptions and just keeping that curiosity open, asking more questions. The courage to hear and listen for the things that maybe don’t [00:12:15] align with what we already think and believe.

[00:12:17] Anne Marie: That’s where the rubber hits the road. It’s really easy to go out and ask a stakeholder and a question. They tell us what we wanna hear. We listen to that. But when they tell us something. That’s hard for us to hear. We don’t listen in the same way. So [00:12:30] that’s what I really challenge everybody out there to do.

[00:12:32] Anne Marie: Ask some tough questions, challenge your own assumptions, and then have the courage to listen when it’s a little uncomfortable to listen. 

[00:12:40] Ursula: And it’s interesting, Anne, and perhaps funny without being funny, but outside [00:12:45] of healthcare, people wanna know what their consumers think and want and feel, and they would think of doing something differently because how are you gonna sell to your consumer?

[00:12:54] Ursula: Why in healthcare would we be worried and yet have those conversations? What if we hear what we don’t [00:13:00] want to hear? Instead of almost hoping that you either get confirmation that you’re on the right path or you learn something different. That has a significant change. And I think that when it comes to innovation and future directions, there is no path forward [00:13:15] outside of having multi partners around the room.

[00:13:18] Ursula: When I think across the innovation cycle, not just a siloed little niche area where we’re rubber stamping something that’s already fully baked to get some validation. How are we co-creating and what does that look like? [00:13:30] And I know co-creation is one of the things that’s most exciting for me as we think about patient inclusivity.

[00:13:36] Ursula: What’s something that comes to mind for you that you’re most excited about for patient inclusivity in the near future? 

[00:13:42] Anne Marie: So maybe I’ll share just a recent [00:13:45] example that we had that was a little bit different. And I think one of the things it does is it demonstrates how looking at something a little bit differently can change the conversation.

[00:13:53] Anne Marie: We it working with in the pharmaceutical industry with one of our commercial teams and they [00:14:00] had very courageously engaged, a group of people living with a particular condition to design some educational material. They came back to us complaining, I’ll use the term, complaining about these really strict [00:14:15] regulations we had that wouldn’t allow them to create these educational materials that were in the language that people were comfortable with.

[00:14:22] Anne Marie: And that resonated with them. And so they asked us to go out and get some patient advocacy to challenge the strictness of [00:14:30] these regulations. And we sat down and we thought, is that what the problem is? What we realized is that the problem was that scientists were writing the consumer portion of the product monograph, which is where we pull all of that educational material from.[00:14:45] 

[00:14:45] Anne Marie: So rather than saying we don’t need strict guidelines, we said, what if we went to Health Canada and said, could we have a patient counsel help us write section three, the consumer section of the product [00:15:00] monograph. So that when we create educational materials, it’s already in the language and the charting and the visuals that, that they find useful and can understand.

[00:15:11] Anne Marie: And they leaned right in. Like we, we were expecting some [00:15:15] skepticism. My goodness. They said great idea. And so we created our first product monograph in collaboration. We had actually the people impacted by that section three write it themselves, and then we were able to [00:15:30] create educational materials that were visually what worked for them and how the information flowed for them.

[00:15:36] Anne Marie: Yeah, I thought was a just a great example of thinking a little bit differently. 

[00:15:40] Brent: I love that. Not just example, but that’s practical. So thank [00:15:45] you so much Anne-Marie, this has been a great discussion. Two big things that I take away from this certainly is be curious and be creative. And so thank you very much for that.

[00:15:55] Brent: And thank you very much for joining us on the podcast today. 

[00:15:59] Anne Marie: Thank you so much [00:16:00] for having. 

[00:16:01] Ursula: Emery, thank you. This was wonderful and we look forward to hearing your voice more as you’ll be cutting some sessions, even one that’s upcoming soon for our listeners. So more coming. Thank you.[00:16:15] 

[00:16:15] Ursula: Thanks for tuning into Amplify, A podcast powered by Patient voice partners. If today’s story moved, you share it, leave a review. And help us amplify more voices. 

[00:16:26] Brent: If you’re a patient or caregiver, you can join Patient Voice [00:16:30] Connect. To share your experience and help shape research and care, visit patient voice partners.com to sign up or learn more 

[00:16:38] Ursula: if you’re a clinician, advocate, innovator, or system leader and you’d like to be a guest on the [00:16:45] show or share a story, reach out directly through the contact form on that same page. You’re also welcome to join Anonymously if preferred. 

[00:16:53] Brent: Follow us on LinkedIn at Patient Voice Partners for updates behind the scenes content and to meet our upcoming guests.

[00:16:59] Ursula: Until [00:17:00] next time, stay connected. Your voice matters.