Amplify: A Podcast Powered by Patient Voice Partners

Ursula Mann, Brent Korte, Anne Marie Hayes, Christine Pisapia, Barry Liden
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Amplify brings you real stories and bold conversations — from patients and caregivers to clinicians, advocates, innovators, and system leaders. Together, we explore the human side of healthcare and the bold ideas that make it better. Powered by Patient Voice Partners, this podcast elevates lived experience to shape better care, access, and policy. Tune in to hear what healthcare looks like — when people are finally heard.

  1. 1d ago

    From Caregiver to Changemaker: Transforming Rare Disease Advocacy Through Policy

    Episode Summary What does it take to turn personal caregiving experience into lasting healthcare change? In this episode of Amplify: Elevating Patient Voices, Ursula Mann and co-host Barry Liden welcome Annie Kennedy, Chief Mission Officer of the EveryLife Foundation for Rare Diseases and one of the leading voices in rare disease advocacy and policy. Annie shares her journey from aspiring physician to caregiver after a loved one was diagnosed with an ultra-rare and aggressive cancer. That experience exposed the gaps in healthcare systems for rare disease patients and families, inspiring her to dedicate her career to advocacy and policy change. The conversation explores the evolution of rare disease advocacy, the creation of patient-centered policies, the importance of patient experience data, and how caregivers and patient communities can influence decisions that shape research, clinical trials, regulatory reviews, and access to treatments. Annie also discusses the work of the EveryLife Foundation and why empowering patients and caregivers to engage in advocacy remains essential for driving meaningful change. Why You Should Listen If you are a patient, caregiver, advocate, healthcare professional, policymaker, or anyone interested in how healthcare systems evolve, this episode offers valuable insights into how real-world experiences can influence national policy and improve outcomes for entire communities. You'll learn: How caregiving experiences can become catalysts for large-scale changeWhy rare disease communities have led many of the advances in patient-centered healthcareWhat patient experience data is and why it mattersHow advocacy efforts helped shape the 21st Century Cures ActWhy collaboration between patients, advocates, researchers, industry, and regulators is criticalHow individuals can become effective advocates regardless of their backgroundEpisode Highlights 04:16 – Annie shares how a loved one's rare cancer diagnosis changed her career path from medicine to caregiving and advocacy. 07:49 – Discovering that many rare disease families weren't facing a broken system—but a system that simply didn't exist. 10:38 – Annie's advice to caregivers: give yourself grace and permission to learn as you go. 12:36 – The mindset that fueled her advocacy work: "It's our table." 14:34 – How Annie helped introduce advocacy efforts within the Muscular Dystrophy Association. 17:23 – The origins of patient-focused drug development and efforts to ensure patient voices influence regulatory decisions. 18:48 – How the Patient-Focused Impact Assessment Act became part of the 21st Century Cures Act. 19:44 – What patient experience data means and why it plays a critical role in healthcare decision-making. 22:37 – Annie explains patient preference studies and how they help determine meaningful treatment benefits and acceptable risks. 25:14 – The mission of the EveryLife Foundation and its work to advance evidence-based rare disease policy. 27:36 – Findings from the National Economic Burden of Rare Disease Study and what they reveal about the financial realities faced by families. 29:33 – Annie reflects on the accomplishments she's most proud of, including developing future generations of patient advocates. 31:17 – A personal glimpse into life outside advocacy as Annie shares what it's like being the mom of a teenager preparing for college. Links Learn more about EveryLife Foundation for Rare Diseases https://everylifefoundation.org/Learn more about Patient Voice Partners https://patientvoicepartners.com/Connect with Patient Voice Partners on LinkedIn https://www.linkedin.com/company/patient-voice-partners/Listen to more Amplify episodes https://patientvoicepartners.com/podcast/Interested in sharing your story or becoming a guest? https://patientvoicepartners.com/contact/Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

    32 min

  2. May 22

    Rewriting the Rules of Women’s Health: Power, Policy, and Patient Voice

    Episode Summary In this powerful episode of Amplify, Carmen Wyton joins Ursula Mann and Anne Marie for a bold conversation about the invisible gaps in women’s healthcare — and the movement to change them. Carmen shares how her experience listening to women with uterine fibroids, many of whom waited over a decade for diagnosis and treatment, sparked the creation of the Women’s Health Coalition of Alberta, which later evolved into the Women’s Health Coalition of Canada. Together, they unpack the systemic biases that have historically reduced women’s health to “bikini medicine,” discuss the importance of lived experience in shaping policy, and explore the groundbreaking Bill S243 — a proposed legal framework designed to ensure women’s health remains a national healthcare priority in Canada. This conversation goes beyond healthcare. It’s about advocacy, accountability, economic impact, prevention, and empowering women to speak openly about their health experiences. Carmen explains why this movement is not just about one disease or condition — it’s about transforming an entire healthcare system for future generations. Why You Should Listen  Learn why women’s health has remained systemically overlooked for decades  Understand what Bill S243 could mean for healthcare in Canada  Hear how advocacy organizations differ from traditional patient groups  Discover how patient voice and lived experience are driving policy change  Explore the economic and societal impact of investing in women’s health  Be inspired by a movement focused on collaboration over competition Episode Highlights  Why women’s health became an “invisible gap” in healthcare  The problem with “bikini medicine” and reproductive-only thinking  How uterine fibroid patient stories sparked a national movement  The creation and rapid growth of the Women’s Health Coalition of Canada  What makes Bill S243 groundbreaking legislation  Why accountability matters more than temporary health strategies  The role of advocacy, collaboration, and grassroots action in policy reform  How women’s health impacts families, workplaces, and the economy  Why women’s stories need to be told publicly and unapologetically  Carmen’s vision for the future — and her dream celebration in ParisMedical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

    35 min

  3. May 15

    From Motherhood to Medicine: Curiosity, Connection, and Reinvention

    Episode Summary This episode is sponsored by Medlior Health Outcomes Research. Sponsorship supports Amplify, while all conversations and perspectives remain independently produced. In this episode of Amplify: Elevating Patient Voices, Ursula Mann and Anne Marie Hayes sit down with Neelam Bance for a thoughtful conversation about leadership, lived experience, healthcare innovation, and the importance of listening deeply to patients and caregivers. Neelam shares reflections from her personal and professional journey — including motherhood, identity, advocacy, and leadership — and how these experiences shaped her perspective on creating more human-centered healthcare systems. The discussion explores the value of curiosity, empathy, and meaningful collaboration in driving change across healthcare and patient engagement spaces. From recognizing barriers within systems to understanding the emotional realities behind patient experiences, this episode highlights why lived experience must remain at the center of innovation and decision-making. This conversation is reflective, inspiring, and filled with insights for healthcare leaders, patient advocates, caregivers, and anyone passionate about creating more compassionate systems of care. Why You Should Listen Learn why listening to lived experience is essential in healthcare innovationHear Neelam’s perspective on balancing leadership, motherhood, and advocacyExplore the importance of empathy and curiosity in driving meaningful changeUnderstand how patient-centered thinking can improve healthcare systems and conversationsGain insights into leadership rooted in humanity, connection, and collaborationEpisode Highlights 00:00 – Introduction to Neelam Bance and her journey in healthcare leadership03:12 – The importance of lived experience in shaping healthcare conversations07:45 – Balancing leadership, motherhood, and personal identity12:30 – Why empathy and curiosity are essential in innovation18:05 – Challenges within healthcare systems and the need for patient-centered thinking24:18 – Building meaningful collaboration between patients, caregivers, and healthcare leaders30:42 – Reflections on advocacy, listening, and creating lasting change36:10 – Final thoughts on leadership, humanity, and the future of healthcareLinks LinkedIn https://www.linkedin.com/in/neelambance/ MedGeneius https://www.linkedin.com/company/medgeneius/ ODINsight https://odinsight.ca/ Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

    42 min

  4. May 8

    Listening to the Heart: Lived Experience as a Catalyst for Better Cardiac Care

    What happens when surviving cancer in your 20s leads to a completely different health journey decades later? In this powerful episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Anne-Marie Hayes sit down with Jackie to explore the realities of women’s heart health, delayed diagnosis, and why patient-led advocacy is changing the future of care. After surviving Non-Hodgkin’s Lymphoma at 24, Jackie went on to build a successful career in fashion and live what she thought was a healthy, “normal” life — until nearly 20 years later, she experienced chemotherapy-induced heart failure. What began as flu-like symptoms eventually led to a diagnosis of cardiomyopathy, opening her eyes to the long-term “legacy” cancer treatment can leave behind. Today, Jackie is a passionate advocate working to improve awareness, access to care, and support systems for women living with heart disease. She shares why women are still too often misdiagnosed, how heart disease symptoms can look very different in women, and why advocacy starts with simply believing that your health matters. This episode is an urgent and empowering conversation about equalizing care, listening to lived experience, and ensuring women are no longer treated as “small men” in cardiovascular medicine. Why You Should Listen Learn how chemotherapy and cancer treatments can impact heart health decades laterHear why women’s heart disease symptoms are still frequently overlooked or misdiagnosedUnderstand the growing connection between gynecology, hormones, and cardiologyDiscover the importance of patient-led support communities and advocacyGain practical insights into heart health risk factors every woman should knowExplore how Canada and global organizations are working to improve women’s cardiac careEpisode Highlights 00:32 – Why women’s heart health remains under-researched and misunderstood04:35 – Jackie’s cancer diagnosis at 24 and the long-term effects of treatment06:32 – Discovering chemotherapy-induced cardiomyopathy nearly 20 years later07:54 – The moment Jackie’s mother pushed her to request an EKG09:49 – The alarming statistics around women and heart disease misdiagnosis12:42 – Feeling isolated while searching for trustworthy patient support16:48 – Jackie’s advice for women: “Put yourself first”18:12 – Hidden heart disease risk factors linked to hormones, pregnancy, and autoimmune conditions22:48 – Why women are still being treated as “small men” in research and medication dosing25:30 – What “bikini medicine” means and why it limits women’s care28:24 – Canada’s progress in women’s heart health and the new national women’s health framework30:43 – Jackie’s “Heart Warrior Queens” philosophy: love boldly, live bravely, lead your own journeyResources & Organizations HeartLife FoundationHeartLife Women / Life in HeartsCanadian Women’s Heart Health AllianceGlobal Heart HubBill S-243: An Act to establish a national framework for women’s health in Canada About Jackie Jackie is a patient advocate living with chemotherapy-induced heart failure following treatment for Non-Hodgkin’s Lymphoma in her 20s. After nearly two decades working in the fashion industry as an apparel buyer, her diagnosis inspired her to dedicate her life to advocacy and women’s heart health awareness. She is the

    32 min

  5. May 1

    From Wheezing to Leadership: Living with Asthma and Leading Change

    Episode Summary This episode is sponsored by Medlior Health Outcomes Research. Sponsorship supports Amplify, while all conversations and perspectives remain independently produced. In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Anne Marie Hayes are joined by Jeff Beach, President & CEO of Asthma Canada. Jeff shares his deeply personal journey—from a childhood marked by severe allergies to a life-changing asthma diagnosis in adulthood—and how that experience shaped his path into patient advocacy and leadership. The conversation explores the realities of living with asthma, including common misconceptions, the importance of proper disease management, and what “good control” truly looks like. Jeff also provides a behind-the-scenes look at leading a national patient organization—navigating funding, maintaining independence, and ensuring patient voices remain at the center of healthcare decisions. With World Asthma Day approaching, this episode is both timely and powerful—reminding us that asthma is not just occasional wheezing, but a chronic condition that requires awareness, action, and advocacy. Why You Should Listen Understand the difference between controlled and uncontrolled asthmaLearn how lived experience shapes healthcare leadership and advocacyDiscover why asthma is often misunderstood—and underestimatedHear practical insights on managing triggers and improving daily lifeGet inspired by stories of resilience, including patients who went from struggling to walk to running marathonsGain perspective on how patient organizations operate, stay independent, and drive changeEpisode Highlights 00:01 – Introduction to Amplify & today’s conversation Setting the stage: patient voices and why this discussion matters. 04:39 – Jeff’s journey with asthma From childhood allergies to an unexpected diagnosis in adulthood. 07:21 – The reality of diagnosis Why asthma can be difficult to identify—especially in children. 11:22 – Rescue vs. controller medication What proper asthma management really looks like. 13:14 – Signs your asthma is not controlled Common misconceptions and warning signs to watch for. 14:12 – Can people with asthma stay active? Breaking the myth—why movement is part of better control. 18:38 – From lived experience to leadership Jeff’s path into patient advocacy and nonprofit leadership. 23:36 – Funding, independence, and trust How patient organizations operate and stay patient-centered. 27:53 – The role of patient voices in healthcare Why advocacy and storytelling drive real change. 31:17 – Looking ahead: World Asthma Day Shifting from awareness to taking asthma seriously. Links & References Asthma Canada: https://asthma.ca/Asthma Canada YouTube: https://www.youtube.com/user/AsthmaSocietyCanadaAsthma & Allergy HelpLine: https://asthma.ca/what-we-do/helpline/Patient Voice Partners: https://patientvoicepartners.com Medlior Health Outcomes Research: https://www.medlior.com/ Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—sho

    35 min

  6. Apr 24

    The Gift of Life, Twice: Charles Cook on Why Organ Donation Matters

    Episode Summary In this deeply moving episode of Amplify: Elevating Patient Voices, we sit down with Charles Cook—a two-time deceased donor transplant recipient who received a life-saving heart transplant in 2016 and a kidney transplant in 2017.  Charles shares his extraordinary journey—from being diagnosed with a genetic heart condition at 17, to surviving a massive stroke, to enduring years of recovery and ultimately facing end-stage heart failure. His story is one of resilience, faith, and an unshakable commitment to “keep banging”—his personal mantra for overcoming life’s toughest obstacles.  In recognition of National Organ & Tissue Donation Awareness Week, this conversation highlights the life-saving impact of organ donation, the importance of representation in healthcare, and why Charles has dedicated his life to giving back through advocacy and patient support. Why You Should Listen  Hear a powerful, real-life story of survival against overwhelming odds  Understand the true impact of organ donation—from a recipient’s perspective  Learn how resilience and mindset can shape outcomes in the face of adversity  Discover the importance of advocacy and representation in healthcare systems  Be inspired to take action and help amplify patient voices Episode Highlights 00:00 – Introduction to Charles Cook and his powerful story 03:30 – A life-changing diagnosis at 17—and losing a dream overnight 12:30 – A sudden stroke and a near-death experience on the highway 21:00 – Facing heart failure and the reality of limited time 23:30 – The life-saving role of an LVAD as a bridge to transplant 27:00 – “Keep Banging”: the mindset that carried Charles through 31:00 – Advocacy, representation, and addressing disparities in care 38:00 – Life after transplant and finding purpose in giving back Links & References: ACB Organ Health YouTube Transplant Ambassador Program Kidney FoundationAbout the Guest Charles Cook is a two-time organ transplant recipient, receiving a heart transplant in 2016 and a kidney transplant in 2017 at Toronto General Hospital.  He is an active volunteer and advocate, working with organizations such as the Kidney Foundation of Canada, the Transplant Ambassador Program, and the African Caribbean and Black Organ Health initiative.  Driven by gratitude for the “two gifts of life” he received, Charles is committed to paying it forward by supporting patients, raising awareness, and advocating for more equitable access to transplant care. Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

    42 min

  7. Apr 10

    Breaking the Silence: Harjeet Kaur on Rare Cancer, Cultural Stigma, and Turning Pain into Purpose

    Episode Summary In this powerful episode of Amplify: Elevating Patient Voices, Harjeet Kaur shares her journey through an ultra-rare stage IV blood cancer—subcutaneous panniculitis-like T-cell lymphoma (SPTCL)—and the life-altering moments that followed. From months of unexplained symptoms and relentless advocacy for answers, to undergoing a stem cell transplant during the height of COVID-19, Harjeet’s story is one of resilience, courage, and survival.  But her journey goes beyond the medical. As a South Asian woman, Harjeet opens up about the cultural silence surrounding cancer, the stigma she faced, and the emotional weight of navigating illness without open conversations. Today, she is using her voice to break that silence—advocating for awareness, representation, and more inclusive support systems for patients from underrepresented communities. Why You Should Listen  To hear a deeply human story of survival, strength, and transformation  To understand how culture and stigma can shape the cancer experience  To learn why patient advocacy—especially self-advocacy—can be life-saving  To gain insight into the challenges faced by young adults and immigrants navigating healthcare systems  To be inspired by how one voice can create impact, build community, and drive changeEpisode Highlights 00:00 – Introduction to Harjeet’s ultra-rare cancer journey 03:39 – Early symptoms and being dismissed as “just a viral illness” 06:02 – Months without answers—and fighting to be heard 07:50 – The life-changing moment: stage IV cancer diagnosis at 32 10:37 – Emotional impact and silent suffering 14:47 – “I want to live”: facing limited treatment options 15:47 – Choosing a stem cell transplant—and her brother as donor 17:37 – Transplant during COVID and complete isolation 19:32 – Cultural stigma and silence around cancer in South Asian communities 24:47 – Turning pain into purpose: advocacy and building Chai & Hope Resources & Links  Patient Voice Partners: https://patientvoicepartners.com Young Adult Cancer Canada (YAC)  Canadian Cancer Society  Harjeet Kaur on Instagram: https://www.instagram.com/harjeetkaur Chai & Hope (South Asian Cancer Community) https://www.instagram.com/chaiandhopeMedical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

    38 min

  8. Mar 27

    Two Steps Forward: Living, Advocating, and Rebuilding After a Brain Tumor with Claire Snyman

    What happens when your life changes in an instant—and you’re left to navigate uncertainty, fear, and a system that isn’t built around you? In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Brent Korte sit down with Claire Snyman, a brain tumor survivor, patient advocate, and health data champion. Claire shares the moment everything shifted—from a sudden onset of vertigo to an unexpected diagnosis of a brain tumor. What followed was not just a medical journey, but an emotional and systemic one—marked by uncertainty, gaps in communication, and the need to advocate for her own care while critically ill. Through her story, Claire reveals what it means to “surf the waves of uncertainty,” rebuild life after brain surgery, and transform personal experience into purpose. Today, she is helping reshape how patients access care, understand their data, and take an active role in their health journey. This episode is a powerful reminder that behind every patient is a story—and a system that still has work to do. Why You Should Listen You want to understand the real-life impact of a brain tumor diagnosis beyond the clinical perspective  You’re interested in patient advocacy and the role of caregivers in navigating care  You work in healthcare, research, or policy and want insight into system gaps  You believe patients should have access to their data—and a voice in their care Episode Highlights[00:00:00] Introduction & setting the stage Ursula and Brent introduce Claire Snyman’s story and the realities behind a brain tumor diagnosis [00:04:24] Life before diagnosis Claire shares her busy life as a working mom before everything changed [00:05:18] First symptoms appear Sudden vertigo, migraines, and the first signs that something was wrong [00:07:09] The unexpected diagnosis Hearing “you have a brain tumor” — and realizing the news was about her [00:08:31] Processing the shock alone Claire receives the diagnosis while her husband is out of the room [00:10:53] Living in uncertainty (“watch and wait”) What it means to monitor a brain tumor while fearing every symptom [00:12:48] Surfing the waves of uncertainty Learning how to mentally cope with fear and constant unknowns [00:14:04] Symptoms worsen The turning point when her condition begins to deteriorate [00:16:02] When the system fails A missed diagnosis, lack of documentation, and gaps in care [00:17:24] Medical emergency & urgent surgery Discovering the tumor doubled in size and required immediate intervention [00:18:52] The importance of advocacy and support Why having a caregiver and speaking up can be life-saving [00:21:13] Living with long-term effects Brain injury, memory challenges, and invisible struggles [00:26:54] “Two Steps Forward” mindset How Claire rebuilt her life and found meaning after recovery [00:27:53] Empowering patients through data & advocacy Helping others take ownership of their health and information [00:30:14] Advice for patients and caregivers Track, educate, ask, and manage — a practical framework for navigating care [00:31:11] Finding healing in nature How walking and hiking became part of Claire’s recoveryLinks: Website: https://twosteps.ca/ Mental health resources: https://twosteps.ca/mental-health-resources/ Book link:

    31 min
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Amplify brings you real stories and bold conversations — from patients and caregivers to clinicians, advocates, innovators, and system leaders. Together, we explore the human side of healthcare and the bold ideas that make it better. Powered by Patient Voice Partners, this podcast elevates lived experience to shape better care, access, and policy. Tune in to hear what healthcare looks like — when people are finally heard.

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  • Creator
    Ursula Mann, Brent Korte, Anne Marie Hayes, Christine Pisapia, Barry Liden
  • Years Active
    2025 - 2026
  • Episodes
    26
  • Rating
    Clean
  • Copyright
    © 2026 Amplify: A Podcast Powered by Patient Voice Partners
  • Show Website
    Amplify: A Podcast Powered by Patient Voice Partners