Welcome to Amplify: Elevating Patient Voices Through Listening and Action

Welcome to the launch episode of Amplify, the podcast powered by Patient Voice Partners, where real stories spark bold conversations. In this episode, host Ursula Mann is joined by her co-hosts Brent Korte, Barry Liden, Anne Marie Hayes, and Christine Pisapia as they explore what patient engagement really means - and why it’s personal, not just professional. 

Together, they share stories of caregiving, lived experiences, and the ways patient voices can influence decisions across healthcare - from policy and regulation to research and clinical care. Learn why listening to patients, caregivers, and healthcare changemakers matters, how insights from lived experiences translate into action, and the impact of truly inclusive patient engagement. 

This episode also introduces Amplify’s mission: to provide a platform that elevates patient voices, fosters understanding, and inspires listeners to think differently, listen differently, and take action in their own healthcare ecosystems. 

What You’ll Learn: 

• Why patient engagement is personal for every member of the healthcare ecosystem 
• How patient perspectives can influence business, regulatory, and clinical decisions 
• The challenges and opportunities in translating patient experiences into meaningful outcomes 
• Ways listeners—patients, caregivers, clinicians, and innovators—can contribute to change 

Want to Share Your Voice? 

If you’re a patient or caregiver, you can join Patient Voice Connect to share your experiences and help shape healthcare here. 

Join our email list to get new episode updates here. 

Together, we can bring more voices to the table and shape the future of healthcare. 

Share this episode, leave a review, and follow Patient Voice Partners on LinkedIn to help amplify more voices. 

Transcript

Title: Welcome to Amplify: Elevating Patient Voices Through Listening and Action 

[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.   
 

[00:00:12] Brent: And I'm Brent Korte. Together. [00:00:15] We're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.   
 

[00:00:21] Ursula: From personal journeys to policy shifts.  
 

[00:00:24] Ursula: These are the voices shaping a healthcare system that listen. [00:00:30] [00:00:45] [00:01:00]   
 

[00:01:01] Ursula: We are going to be talking about patient engagement. What it actually means? Why it's personal and not just professional and even why Amplify. What we're trying to build together. Today. I'm joined by not one, but all four of my [00:01:15] co-hosts.   
 

[00:01:15] Brent: I'm Brent Korte.   
 

[00:01:17] Barry: Hey, I'm Barry Liden.   
 

[00:01:18] Anne Marie: Hi everyone. I'm Anne Marie Hayes.   
 

[00:01:20] Christine: Good morning. I'm Christine Pisapia.  
 

[00:01:22] Ursula: We all have a story when we came together to work at Patient Voice Partners as to why patient engagement is personal. It's not just [00:01:30] professional. And for me, I noticed representation matters. That was my personal trigger. I wanted to make a difference in healthcare, and I really started to notice when things were not representative of my children, and that really bothered me.  
 

[00:01:42] Ursula: I also thought we could do a better job of [00:01:45] having more voices around the table earlier in the process and throughout the entire system versus getting patient feedback right at the end. Brent, what about you?   
 

[00:01:54] Brent: I noticed more within, if we want to call it the system, the system just hasn't adapted whether the [00:02:00] system is within the healthcare system and being able to take a lot of that input, engagement, and perspective of patients or industry.  
 

[00:02:08] Anne Marie: For me, I was primary caregiver for a number of family members, including most recently my husband. I couldn't [00:02:15] believe how many times the system let us down didn't work for us. I would think about how privileged I am to know the system so well, and to know so many people within the system, and if I can't navigate it properly, my goodness, who else needs help?  
 

[00:02:29] Ursula: What a good [00:02:30] reflection. Anne Marie. I've been there, done that, and the number of times you have to go answer the same question instead of having information shared is really frustrating, which makes me think of data. Barry, over to you.   
 

[00:02:41] Barry: I have been super inspired by patient [00:02:45] voices, mostly because of how I've seen they can move companies that make better decisions.  
 

[00:02:49] Barry: Patient stories help move the hearts and minds of leaders within companies. Early in my career, the company reduced their discard percentage, meaning the [00:03:00] number of units they had to throw away because they didn't meet criteria. From 20% down to 8% by making a connection between the manufacturing workers and the patient.  
 

[00:03:10] Barry: FDA was interested in quantifying patient preferences to help them [00:03:15] inform their decision making. I was involved in showing how patients may have a different point of view than doctors, regulators and others in the healthcare system, and showed how that can really change the way that decision makers can ultimately give patients access.  
 

[00:03:29] Ursula: Barry, I love [00:03:30] that. It's exactly the reason we say we need to talk to everybody. Of course, it's understandable that people have different points of view when they're not all talking about the same thing, and it's really no one's fault. There's specific reasons that when we ask patients, we hear different things.  
 

[00:03:44] Ursula: There's different [00:03:45] physicians that are specific specialties and they're there to treat that for a patient. What a game changer it is when we have everyone around the table and we're able to get all those perspectives and talk to each of the change makers.   
 

[00:03:54] Brent: And I think when you talk data. You don't really think of patients and data a [00:04:00] quantifiable Well, no. I know we do, but I think that when Barry brings it into it, it has a different perspective. Maybe that's a good reason for us to be talking about this today. You're Anne Marie or Christine, and you'll talk about it in a bit too. The personal impact in Ursula you as well. Not to say Barry, you know, talking about personal [00:04:15] impact, but the quantifiable part and the impact that has directly from a business perspective and then from a regulatory perspective and how different ways it impacts the system and that patients really have a voice.   
 

[00:04:27] Ursula: Christine, patient engagement I know is very personal to [00:04:30] you. What's your thoughts?   
 

[00:04:31] Christine: It's very personal on many levels. I like Anne-Marie was a caregiver. And you as well. Ursula to a number of family members in different therapeutic areas and I've seen the system fail us in different ways. I can't speak openly about stories that belong [00:04:45] to other people.  
 

[00:04:46] Christine: I can only speak to my story as a living kidney donor. I've seen that system. It didn't fail me, but I can see how it would definitely fail a lot of living donors because you're on their schedule. Even though you're doing something altruistic, that's going to save the healthcare [00:05:00] system a ton of money. They put a bunch of barriers in the path of living kidney donors, and it gets as bad as some people actually give up.  
 

[00:05:08] Christine: So that's a prime example.   
 

[00:05:10] Ursula: Thanks, Christine for sharing that. We talk about patient engagement a lot. We hear that word [00:05:15] a lot in the ecosystem, and yet there's so many ways that we get it wrong, and things aren't moving well. There's patient engagement, patient centricity, perhaps a term ready to retire.  
 

[00:05:24] Ursula: Patient inclusivity and patient advocacy. Even with the best of intentions, things are still [00:05:30] challenging beyond the system. So, Anne-Marie, what are your thoughts? Why are things not quite where they should be and what is it that's making it wrong?   
 

[00:05:37] Anne Marie: Thanks for that question. I think there's still a power imbalance when we put multi-stakeholders in a room to talk about health [00:05:45] policies, health decisions, health structures, processes.  
 

[00:05:47] Anne Marie: The voices of those who are impacted most by these decisions often have the least strong voice in these power dynamics. That's what needs to shift for it to change. The [00:06:00] question I always throw out to folks who are trying to get it right is. What questions are you asking and why are you asking them? We get that wrong sometimes.  
 

[00:06:09] Anne Marie: We have a very narrow lens when we ask questions, and then what do you do with that information [00:06:15] when you hear it? Are you actually taking different actions, making different decisions? Are you diving deeper? When you hear something that is uncomfortable, you don't know? What do you do with that versus when people tell you that you're doing things really well?  
 

[00:06:29] Anne Marie: So [00:06:30] those are some of the things I think that are top of mind for me about what we need to do better or why we're not quite there yet.   
 

[00:06:37] Ursula: Anne Marie. I love that. And you mentioned ask the questions, and we often talk to people about translating what those questions are. It's a tick of the [00:06:45] box exercise where we ask people, here's what they said.  
 

[00:06:47] Ursula: But did you take the time to make sure they understood the question? You've heard me talk about a recent example I had talking to a hospital. They're like we did a survey. Yay. They said, we asked patients, will you come back to our hospital? And the [00:07:00] overwhelming answer was no. And they're like, uhoh, what do we do wrong?  
 

[00:07:02] Ursula: What they meant to ask people was, if you get sick and you need to go back to a hospital, would you come back to this hospital? And that's a different question. And so framed up. It's challenging. We mentioned data earlier on. It's [00:07:15] dirty data. I like to say you're going to get an answer to the question that you're posed if you're not exactly sure how that's interpreted from different lenses.  
 

[00:07:21] Ursula: And how useful is the information? Barry, what are your thoughts on that?   
 

[00:07:25] Barry: I couldn't agree more. I think part of the problem is this power imbalance, but [00:07:30] let's not look at it from the perspective of evil stakeholders, keeping patients out of the loop. It's the way systems have been built, and we've got a lot of different systems.  
 

[00:07:38] Barry: The United States is probably the most segregated system in the world. The lack of coordination between providers is [00:07:45] embarrassing, but it's not their fault. That's the way the system was built. If you're a physician, how are you going to get measured? How are you going to get paid? How do you do your job?  
 

[00:07:54] Barry: Who's evaluating your performance? In a lot of our communities, whether it's [00:08:00] Canada or Belgium, or the United States, the patient is not involved in any of that evaluation. What we're trying to do is figure out ways to change that over time. Demonstrate that the patient voice [00:08:15] can really help improve outcomes for everybody.  
 

[00:08:18] Barry: Physicians want to help people and improve public health. Same with regulators, same with even payers. I know everybody thinks that payers are these big evil empires, but they're in it to help people and we [00:08:30] wouldn't be able to get healthcare without them. All we need to do is have a better alignment of focus.  
 

[00:08:36] Barry: If we can bring to the table metrics outcomes that matter most to patients, to the forefront. If we're all [00:08:45] focused on that together, then we're all shooting towards the same target, lying to helping each other out.   
 

[00:08:51] Ursula: Barry, I actually agree with you, but I think that's a really good point. It's understanding the flaws in the system and knowing then how to work together to fix them.  
 

[00:08:59] Ursula: There are [00:09:00] situations where physicians are missing billing codes. They're doing the work, but they can't even process some of the work being done. Christine, I've heard you talk a lot and I'm interested in your thoughts in sharing this, the cost to patients and caregivers. When engagement isn't [00:09:15] done or it's done poorly, what do you think?  
 

[00:09:18] Christine: There are many examples. I mentioned one just earlier. That is a real cost to the kidney recipient, the donor, and the healthcare system. It impacts everybody when it's done poorly and not done efficiently. I [00:09:30] remember when I was a brand team leader in women's health for product, for osteoporosis in a pharmaceutical company.  
 

[00:09:35] Christine: We did focus groups with women to understand what they were going through through menopause. It helped us understand who our competitors are. We were actually off the mark. We were [00:09:45] thinking that we were competing against other osteoporosis specific drugs when in fact we were also competing against HRT Hormone Replacement Therapy, which is a much bigger group of drugs that do a lot more than just tackle osteoporosis.  
 

[00:09:58] Christine: If you don't know that, [00:10:00] then your entire launch forecast can be totally off base. Thanks to the fact that we took the time to listen to the women, what they were looking for in their therapies, that allowed our person doing the forecasting to get the number right on year one in a therapeutic area [00:10:15] that we were not even operating in.  
 

[00:10:16] Christine: That's really connecting the feedback you're getting from the patients with the actual business side of things.   
 

[00:10:24] Ursula: I love that, Christine. Thank you. There's actual, tangible business results in terms of businesses moving [00:10:30] forward and even dollars, so to speak. There's also trust with stakeholders and external partners.  
 

[00:10:35] Ursula: They're working together on making things better. Brent, I am interested in how we move from including patients to actually changing decisions. Where would you take [00:10:45] that?   
 

[00:10:45] Brent: Well, I think all the things we're talking about. Play into that part of it. Christine, Anne Marie, Barry all touched on it, speaking their language depending on who you're talking to.  
 

[00:10:53] Brent: So you talk about as a brand lead, Christine, hearing them not only asking the right questions so that you get [00:11:00] information that can be useful to you, like competitor information, but that was something you were open to listening to. When I think of regulators or payers, that perspective, they're looking at the metrics, data, that sort of thing, where they're looking at, we hear that sometimes have those [00:11:15] conversations and wonder why it doesn't resonate.  
 

[00:11:17] Brent: Around. Oh, hey, you know, a kidney transplant patient, for example, the kidney transplant patient does not, or they save money, there's savings to the system. Same thing with so many other therapeutic areas.  
 

[00:11:29] Barry: That point [00:11:30] Brent, the idea of us trying to be translators in some ways, trying to take the patient voice and translate that into quantitative data that a regulator will understand or  
 

[00:11:39] Barry: Money that an investor might understand and vice versa. Helping patients understand [00:11:45] why decisions are being made the way they are. I think all of us, if we're better informed, consumers can be better at navigating the healthcare system.   
 

[00:11:52] Brent: I really like the word translator. Beause that's an important component.  
 

[00:11:56] Brent: It's a two-way street because you have to, like we were talking about, it's the [00:12:00] question, the answer, how that's interpreted. Deal with a number of elected officials and they are very moved and impacted by individual experiences. Maybe less so on data. I'm not saying they're not data focused, don't get me wrong.  
 

[00:12:13] Brent: But the less data focused, [00:12:15] but more personal focus. 'cause that's their world. That world is dealing with them. Same with doctors, they're dealing with. But they've got the balance. And so the translation fee, because it's important.   
 

[00:12:24] Ursula: I'm giggling because you're so strategic. I'm surprised you're not more of a data lover.  
 

[00:12:28] Ursula: Brent   
 

[00:12:29] Brent: I love [00:12:30] data. Come on now   
 

[00:12:32] Anne Marie: I just want to reflect back on another word we were just talking about because it makes me think a little bit differently. And we were talking about how we compete, right? A lot of healthcare businesses are in the for-profit model. [00:12:45] Patients consistently, when I've worked with patients in those for-profit model businesses, what they've really helped me understand is to define competition differently.  
 

[00:12:57] Anne Marie: So rather than competing with one another. [00:13:00] We have a common competitor. If it's lung cancer we're trying to beat, if it's heart disease, whatever that is, that is our true competitor. And what we need to think about or do differently is think about what role each of us [00:13:15] play in battling that foe. Rather than focusing on each other, and I think that's a consistent theme that I've had patients feedback.  
 

[00:13:25] Ursula: I appreciate that. I know patient engagement we've talked about, it's hard. I [00:13:30] can understand why different organization and groups are like, we don't know how to do it. There's privacy considerations, compliance considerations. There's trust finding, there's understanding. What's the profile of who we need to learn from in this situation?  
 

[00:13:44] Ursula: So. [00:13:45] There are challenges and safeguards and situations that people need to set up to do it properly. I appreciate the conversation on why patient engagement or inclusivity or advocacy, it's personal for all of us. I'm interested in addition to making [00:14:00] sure that our systems are building trust and equity and sustainability really of patient engagement for real outcomes, how we came to this point.  
 

[00:14:08] Ursula: So why Amplify? What does it mean to you?   
 

[00:14:12] Barry: I think part of the challenge and opportunity [00:14:15] that we all have is to help elevate the patient voice and also learn how to listen better. Amplify is here to provide. All you the listener, the opportunity to really focus on a [00:14:30] patient's perspective and do it in a way that makes it easily accessible.  
 

[00:14:33] Barry: You can do this on your drive time while you're working out, but use it as an opportunity. We're so distracted with today's technology. For me, Instagram reels is my current addiction. The ability to actually just push [00:14:45] everything aside and focus and really learn how to listen, not just to the words that are coming out, but the emotions in the person's voice, and to hear something that we might not have been able to hear before.  
 

[00:14:54] Barry: That to me, is the magic of listening to patients and patients' perspectives. They [00:15:00] can help us really improve ourselves and become better people.   
 

[00:15:04] Christine: I would go beyond that. So that is the first step for sure. Beyond that is you have to listen and then think about how can you act on it? What is it that you do?  
 

[00:15:14] Christine: What [00:15:15] role do you play in that entire system? And even if you're a patient and a caregiver yourself, and you're listening to the Amplify Podcast. What is it that you can do and bring to the table to bring about that change? If we can motivate people to say, Hey, first of all, [00:15:30] I'm not alone. I'm listening to the story of somebody else who's going through something very difficult and they did something about it.  
 

[00:15:36] Christine: They were an agent of change. And maybe I can be an agent of change as well in my own way. And being an agent of change can just be the way that you [00:15:45] change how you relate to the person that you're a caregiver to. It's not just listening, it's listening and then acting on it. Or another success is if it's a physician listening to our stories and they say when they're confronted to a patient that has [00:16:00] that profile and they remember the podcast, they can hear the voice of that patient while they're in front of that patient.  
 

[00:16:07] Christine: When they can hear the voice of the patient that was interviewed on Amplify, and they think about that person when they're in front of that patient, that's a great [00:16:15] success.  
 

[00:16:15] Ursula: Anne Marie, what does Amplify mean to you? Why'd you say yes? Why now?  
 

[00:16:20] Anne Marie: I love good conversations and it helps me think better and think differently.  
 

[00:16:24] Anne Marie: It's the opportunity to have interesting deep conversations with different [00:16:30] folks who touch healthcare. To Christine's point, it's in thinking differently and having these conversations that I can start to see how I can behave differently, how I can do things differently, what kinds of partnerships might I engage in, and where might I lend my talent and [00:16:45] ideas.  
 

[00:16:45] Anne Marie: So, yeah, it's all about great conversations for me that help me think and act differently.   
 

[00:16:52] Ursula: Well, Anne Marie, speaking of thinking and acting differently, I have to say thank you because you always challenge me with a question often before you answer my question, [00:17:00] and it always has me thinking and on my toes.  
 

[00:17:03] Ursula: Brent, what about you? Why?   
 

[00:17:05] Brent: For me, it is inspirational. The conversation we're having today. I agree with Anne-Marie. A good conversation is fun and very directed. I find it inspirational, the group we have [00:17:15] here today, but also the conversations we've had on the podcast so far and upcoming this season. Those are inspirational.  
 

[00:17:21] Brent: The change that can be made, the impact Christine's talking about that can trigger something in someone's. Actions or motivation, approach, a [00:17:30] perspective, all those things. I find that very, not only motivating, but as I said, very inspirational.   
 

[00:17:35] Ursula: I love that. We created, Amplify the Podcast by Patient Voice Partners to elevate lived experience across sectors.  
 

[00:17:41] Ursula: And you'll hear us talk about change makers. We do have change makers [00:17:45] on the system, patients, caregivers, clinicians, innovators, policy makers, patient organizations. That's who we speak to. It's really interesting because we've had conversations here and there where someone's like, am I a change maker? And Christine, you highlighted it really well just a few [00:18:00] minutes ago, where people make changes within their circle and they're doing something differently for themselves, for their loved one if they're a caregiver or Anne Marie.  
 

[00:18:08] Ursula: You talked earlier about something within the system you recognize despite being well versed in the system, there were challenges. How were people [00:18:15] navigating it? I have found so many of these conversations valuable. It's a platform for learning and a broader shift towards designing health systems with people not around them.  
 

[00:18:25] Ursula: I love that. Lived experience is a form of strategic intelligence and engagement and [00:18:30] inclusivity. Done well, improves outcomes, trust and equity. We're delighted to have you join us today on Amplify, and we look forward to you tuning in and having more shows with us.   
 

[00:18:39] Barry: So I'm interested to hear what do you all think is the one thing that people could most take away from listening to [00:18:45] Amplify? Anne Marie?  
 

[00:18:46] Anne Marie: I think what people can take away most is a different way of thinking, hearing something that challenges the assumptions. They walked into the episode carrying   
 

[00:18:57] Barry: Christine.   
 

[00:18:58] Christine: Yeah. I think what people can take away [00:19:00] from Amplify is listening to different perspectives from different people, like, uh, very diverse group of people.  
 

[00:19:06] Christine: And if you're out there and you want to tell your story, please get in touch with us because we really want to have diverse opinions being shared on Amplify.   
 

[00:19:14] Barry: I think [00:19:15] it's an opportunity to escape from the day to day, ROI, and business focused effort and really change our focus back to what is it? Why are we in healthcare?  
 

[00:19:24] Barry: This is a way for us to get closer to our purpose.   
 

[00:19:28] Ursula: I think for me it's [00:19:30] just been a real learning. There are some similarities across managing certain diseases and there's some real differences, and I've appreciated how honest our guests have been. It's gotten emotional at times. I've always walked away learning something and thinking a little bit [00:19:45] differently.  
 

[00:19:46] Brent: I think the perspectives that we've heard and that we will hear. You guys have all captured it extremely well. Thinking differently, listening differently. Those are important. The role of the translator, the escape to listen to this podcast and how it relates [00:20:00] to your day to day and how you can have an impact, I think is kind of the one thing that I hope that people take away.  
 

[00:20:05] Brent: I do want to thank our co-host all of you for joining us today. Great episode. Great discussion. Great conversation as we always have. Really excited to the time ahead. [00:20:15] Thank you very much.  
 

[00:20:22] Ursula: Thanks for tuning into Amplify, a Podcast powered by Patient Voice Partners. If today's story moved, you share it. [00:20:30] Leave a review and help us amplify more voices.   
 

[00:20:34] Brent: If you're a patient or caregiver, you can join Patient Voice Connect. To share your experience and help shape research and care, visit patient voice partners.com to sign up or learn more [00:20:45]   
 

[00:20:45] Ursula: if you're a clinician.  
 

[00:20:46] Ursula: Advocate, innovator or system leader,   
 

[00:20:49] Ursula: 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. You're also welcome to join Anonymously if preferred.   
 

[00:20:59] Brent: Follow us on [00:21:00] LinkedIn at Patient Voice Partners for updates behind the scenes content and to meet our upcoming guests.  
 

[00:21:05] Ursula: Until next time, stay connected. Your voice [00:21:15] matters.