Amplify: A Podcast Powered by Patient Voice Partners

Episode SummaryThis 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 ListenUnderstand 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 Highlights00:01 – 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 & ReferencesAsthma 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

Episode SummaryIn 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 Highlights00:00 – 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 GuestCharles 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.

Episode SummaryIn 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 Highlights00:00 – Introduction to Harjeet’s ultra-rare cancer journey03:39 – Early symptoms and being dismissed as “just a viral illness”06:02 – Months without answers—and fighting to be heard07:50 – The life-changing moment: stage IV cancer diagnosis at 3210:37 – Emotional impact and silent suffering14:47 – “I want to live”: facing limited treatment options15:47 – Choosing a stem cell transplant—and her brother as donor17:37 – Transplant during COVID and complete isolation19:32 – Cultural stigma and silence around cancer in South Asian communities24:47 – Turning pain into purpose: advocacy and building Chai & HopeResources & 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.

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: 

Kidney disease is often called a “silent illness”—but for those living with it, the reality is anything but quiet.In this powerful episode of Amplify: Elevating Patient Voices, Ursula Mann joined by Christine Pisapia and special guest Susan McKenzie, a kidney transplant recipient and leading patient advocate. Sue shares her deeply personal journey—from delayed diagnosis and emergency dialysis to receiving a life-changing transplant from her sister-in-law.Together, they unpack the hidden challenges within the healthcare system, including missed early detection, long donor testing timelines, and the emotional toll of dialysis. The conversation also shines a light on the transformative impact of peer support through the Transplant Ambassador Program, and why a “transplant-first” approach could improve both patient outcomes and healthcare costs.This episode is a candid, eye-opening look at the realities of kidney disease—and a hopeful call to action for better awareness, advocacy, and patient-centered care.🎧 Why You Should ListenGain a real-life perspective on kidney disease, dialysis, and transplantUnderstand the gaps in early diagnosis and healthcare systemsLearn why living donor transplants are often the best optionDiscover the emotional and mental health impact of dialysisBe inspired by powerful patient advocacy and peer support initiatives⏱️ Episode Highlights[00:00:00] – Introduction to Kidney Transplant Conversations Ursula and Brent introduce the episode and welcome Christine Pia and guest Susan McKenzie.[00:02:00] – Sue’s Personal Journey with Kidney Disease Family history, early warning signs, and the long road to diagnosis.[00:04:30] – Delayed Diagnosis and Missed Opportunities How lack of early intervention led to disease progression.[00:06:00] – Finding a Living Donor Challenges of genetic conditions and the emotional journey of donor matching.[00:08:30] – What Donor Testing Really Involves A deep dive into the extensive and often lengthy donor evaluation process.[00:12:00] – Why Preemptive Transplant Matters The missed opportunity to avoid dialysis and why timing is critical.[00:14:30] – The Reality of Dialysis Breaking the myth: why dialysis is physically and emotionally exhausting.[00:17:00] – The Hidden Struggles Patients Face Living with illness while trying to maintain a “normal” life.[00:18:30] – The Power of Peer Support How the Transplant Ambassador Program is changing patient experiences.[00:24:00] – Advocacy and the ‘Transplant First’ Movement Why systemic change is needed to prioritize transplants over dialysis.[00:26:00] – The Cost of Dialysis vs. Transplant A compelling case for better healthcare investment decisions.[00:29:00] – Barriers to Living Donation Why willing donors sometimes don’t make it through the system.[00:32:00] – Debunking Myths About Donor Risk Understanding the real (and minimal) risks of kidney donation.[00:33:30] – What People Don’t Know About Kidney Disease Why awareness and education are still lacking.[00:34:00] – A New Podcast to Amplify Kidney Patient Voices Sue shares her upcoming initiative to educate and support patients.[00:35:00] – A Heartwarming Ending Sue reflects on life after transplant—and time with her twin granddaughters.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

In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Brent Korte sit down with Sandra Walker, venture capital partner at Hard Climate Venture Studio and founder of Viacern.Sandra has spent decades working across global healthcare systems—spanning pharmaceuticals, biotechnology, diagnostics, venture capital, and now climate innovation. Throughout her career, she has been drawn to tackling the kinds of complex, messy problems that require systems thinking, collaboration, and bold leadership.The conversation explores how leaders make decisions within complex systems, why unconscious bias often shapes those decisions, and how personal experiences—like caregiving—can influence how we approach change.Sandra also shares her journey as a remote caregiver for her father during a critical health period, highlighting the emotional and logistical challenges many caregivers face but rarely talk about.From healthcare leadership to climate innovation, this episode examines how different systems intersect—and why solving tomorrow’s healthcare challenges requires thinking beyond traditional boundaries.

Episode SummaryIn this episode, Ursula Mann is joined by Christine Pisapia for a thoughtful conversation with Sigrun Watson, a healthcare leader and entrepreneur passionate about improving women’s health and reducing stigma around mental health.Sigrun shares her personal journey with perfectionism, an eating disorder, depression, and what it meant to seek help—and why storytelling and community can be powerful first steps toward healing. The conversation also explores gaps in women’s health education and care, including pelvic floor health and menopause, and what Sigrun is building through her work with UROSPOT to make pelvic health support more accessible and modern.Why you should listenListen if you want:A real, compassionate conversation about mental health, perfectionism, and asking for helpInsight into why women’s health is still under-researched and under-discussedA clearer understanding of pelvic floor health, menopause-related changes, and why symptoms are often normalizedA leadership perspective grounded in empathy, lived experience, and patient-centered careHopeful reminders that you’re not alone—and that support can start with hearing someone else’s storyEpisode Highlights[00:00:00] Introduction Ursula and Brent welcome listeners to Amplify – Elevating Patient Voices and introduce the themes of women’s health, mental health, and leadership.[00:03:00] Meet Sigrun Watson Sigrun shares her Icelandic roots, career journey from dietitian to pharmaceutical executive, and her passion for healthcare transformation.[00:06:11] Perfectionism & Eating Disorders Sigrun opens up about her struggle with bulimia, the connection between perfectionism and eating disorders, and how mental health shaped her career path.[00:08:54] The Impact on Young People Christine and Sigrun discuss perfectionism in children, early warning signs for parents, and the pressures of social media.[00:12:15] Depression & Dark Thoughts in University Sigrun shares her experience with depression during first-year university and why early intervention and support matter.[00:14:03] The Power of Storytelling & Unsinkable Sigrun discusses her work with Unsinkable, the healing power of shared stories, and how vulnerability creates connection and hope.[00:18:52] Mental Health Access & Affordability The conversation explores barriers to accessing care and why hearing others’ lived experiences can be a powerful first step.[00:22:45] Women’s Health Gaps Ursula transitions the discussion to women’s health—highlighting stigma, lack of education, and systemic research gaps in menopause and midlife care.[00:23:19] Sigrun’s Menopause Journey Sigrun shares her personal experience with perimenopause and menopause, and how it reshaped her perspective on healthcare.[00:27:55] Pelvic Floor Health Explained A deep dive into pelvic floor muscle function, why issues like bladder leakage are common but under-discussed, and how hormonal changes accelerate muscle weakening.[00:30:36] What UROSPOT Does Sigrun explains the technology behind pelvic floor rehabilitation and how non-invasive electromagnetic therapy works.[00:33:41] The Reward of Being Close to Patients Sigrun reflects on moving from corporate healthcare into entrepreneurship and the profound impact of working directly with patients.[00:34:43] Closing Reflections Ursula and Christine thank Sigrun for her candor and leadership in advancing mental health awareness and women’s health innovation.Want to Share Your Voice?If you’re a patient or caregiver, you&

Episode SummaryIn this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Brent Korte speak with Reg Joseph, CEO of Health Cities, about how community-based care, patient empowerment, and system design shape real healthcare outcomes.Reg shares insights from his background in biotechnology, finance, and healthcare innovation, explaining why technology alone cannot fix healthcare challenges. The conversation highlights the importance of redesigning care models, supporting patient self-management, and integrating healthcare into communities—especially in rural and underserved settings.Drawing from real-world examples and personal experience as a patient, this episode explores prevention, data use, access to care, and why the future of healthcare must extend beyond hospitals and clinics.Why You Should ListenLearn why community-based healthcare is critical to better outcomesUnderstand how innovation should be driven by patient and system needs, not technologyHear practical examples of remote monitoring and self-management in actionGain insights into rural healthcare access and decentralized care modelsDiscover how patients can self-advocate and partner with cliniciansExplore how responsible health data use can improve community wellnessEpisode Highlights (with Timestamps)[00:00–01:36] Introduction to Reg Joseph and the focus on community-driven healthcare[02:06–04:21] Reg’s transition from biotech and finance into healthcare systems[04:21–05:14] Why healthcare innovation often fails due to system complexity[05:47–07:18] Designing care models before introducing technology[07:18–08:21] Meeting patients where they are to improve outcomes[08:36–11:22] Remote monitoring, rural care challenges, and patient self-management[11:22–12:32] Prevention, education, and long-term wellness[12:46–14:17] A personal patient experience inside the healthcare system[14:40–17:35] How patients can self-advocate and engage clinicians effectively[17:35–19:46] What healthcare can learn from banking and consultative models[20:01–22:31] Simplifying complex systems through community collaboration[22:31–24:37] Rural Alberta as a model for integrated community care[25:32–29:10] Decentralized care, technology, and access beyond urban centers[29:55–31:03] Looking ahead: leadership, recovery, and personal goals[31:03–32:01] Final reflections on patient-centered, community-based healthcareWant 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.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 a

In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Barry Liden are joined by Barry Stein, President and CEO of Colorectal Cancer Canada, for a powerful and deeply personal conversation about colorectal cancer, early screening, and why patient voices matter in shaping healthcare systems.Barry Stein shares his remarkable journey—from a late-stage colorectal cancer diagnosis in the mid-1990s, through multiple surgeries and innovative treatments, to becoming one of Canada’s most influential patient advocates. His story highlights how determination, shared decision-making, and advocacy can drive meaningful change at both the individual and system level.Together, the hosts explore why colorectal cancer screening is so critical, how screening programs have evolved across Canada, and the real-world barriers patients face when it comes to testing and access to care. The conversation also dives into the importance of patient engagement in research, clinical trials, and health technology decision-making—reminding us that data alone is never enough without lived experience.This episode is a compelling reminder that patients are not just stakeholders in healthcare—they are essential partners.In This Episode, You’ll Hear About:Barry Stein’s personal experience with stage IV colorectal cancer and what it taught him about advocacyWhy early detection and screening save livesThe role of FIT testing and colonoscopy in colorectal cancer screeningHow patient voices influence policy, access, and innovation in healthcareWhy patient preference and lived experience matter in research and decision-makingThe long-term impact of advocacy—for individuals, families, and health systems

How is patient engagement evolving in one of the world’s fastest-changing healthcare regions? In this episode, Ursula Mann and Christine Pisapia sit down with Mostafa Najib, a pharmaceutical leader with more than 20 years of experience across the Middle East.Together, they explore how patient expectations are shifting, how technology and policy are reshaping access to innovation, and why meaningful patient insight is still one of healthcare’s biggest challenges—globally.Why You Should ListenTo gain a global perspective on how patient voices are being integrated into healthcare decision-makingTo understand what’s changing in the Middle East—and what remains surprisingly similar worldwideTo hear real-world reflections from inside the pharmaceutical industryTo explore how patient insight can shape better strategy, access, and outcomesTo consider what the future of patient-centered healthcare could look like across systemsEpisode Highlights00:03:32 — Entering the pharmaceutical world How Mostafa found his path into pharma and why the commercial side captured his interest.00:05:03 — The rise of patient engagement in the Middle East A look at how patient expectations and behaviors have shifted over the last two decades.00:06:00 — The limits of traditional patient programs Why awareness and access initiatives still fall short of capturing what patients truly value.00:07:26 — When assumptions miss the mark How physician perceptions sometimes diverge from what patients actually want or fear.00:08:42 — Shared global patterns Christine reflects on similar trends in North America—from “Dr. Google” to increasing patient advocacy.00:09:05 — The evolving role of patient groups Why patient associations are more established in Europe and North America than in the Middle East.00:11:04 — Faster access to innovation How regulatory modernization is closing the gap between U.S. approvals and local availability.00:12:23 — Digital transformation (and no more faxing) A lighthearted look at how digital health infrastructure has rapidly advanced in the region.00:14:35 — What’s missing from patient insight The everyday realities, symptoms, and priorities that often never reach the healthcare system.00:17:09 — Shrinking visit time How shorter appointments impact patient–physician communication and understanding.00:20:20 — Designing a connected ecosystem Mostafa imagines a future where patients, providers, payers, and pharma collaborate more seamlessly.00:21:43 — When patient feedback redirects strategy A real-world example of how one insight changed the course of a major investment.00:25:30 — Surfing, seasons, and perspective A glimpse into Mostafa’s life outside of work—and the waves he’s chasing next.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.

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. 

Episode Summary In this powerful episode of Amplify, hosts Ursula Mann and Christina Pisapia speak with Erin Paterson, a writer, caregiver, and advocate whose life was transformed by Huntington’s Disease (HD). Just as Erin and her husband were preparing to start a family, she learned a long-kept family secret: her grandmother may have died from Huntington’s. This revelation pushed Erin into rapid genetic testing, where she tested gene-positive. What followed was a decade-long struggle with depression, infertility, caregiving responsibilities, and fear of the future. But Erin rebuilt her life through writing, community, caregiving, and storytelling. Today, she advocates globally for people living with rare diseases and cares for her father, who is now in his 80s with late-onset HD. Her story is one of courage, connection, and the quiet beauty of finding purpose—even when living with uncertainty.  Why You Should Listen This episode is for you if you: Work in healthcare and want to understand how to deliver compassionate, human-centered care for people with neurological and rare diseases. Support a loved one with chronic illness and want to hear how another caregiver navigates emotional, logistical, and generational challenges. Are navigating inherited risk, fear of the unknown, or the emotional weight of a diagnosis—personally or within your family. Believe in the power of storytelling, community, and advocacy to transform pain into purpose. Want to hear how small acts of joy and presence can sustain connection—especially when speech and movement change. You’ll walk away with a deeper understanding of Huntington’s disease, the importance of slowing down in care settings, and how love and community can reshape even the hardest realities.  Episode Highlights 00:00 — Understanding Huntington’s Disease A clear, human explanation of what HD is and why lived experience is essential. 02:35 — A family secret revealed Erin shares the unexpected moment that changed the course of her life. 03:57 — Facing a life-altering diagnosis How Erin processed the news and what the early emotional impact looked like. 08:28 — Becoming a caregiver What it meant to step into supporting her father as HD progressed. 09:46 — Advocacy in the healthcare system Erin reflects on what patients and families often need—but don’t always receive. 13:24 — Rebuilding after a difficult season The small, intentional practices that helped her slowly find her way forward. 15:49 — Transforming pain into purpose How writing, publishing, and community shifted Erin’s path. 28:34 — Connection beyond words A beautiful insight into staying close to a loved one when communication changes. 

In this conversation, Ursula and Anne Marie sit down with Mark Stolow, Founding Director of People Before Patients, to explore what it truly means to humanize healthcare.  Drawing from early caregiving experiences and over two decades in public health, Mark challenges the industrial logic shaping today’s system and offers new metaphors—like forests, ecologies, and “the dome”—to help us reimagine care in a more relational, alive, and humane way. He also introduces the practice of asking “more beautiful questions,” examines the difference between cold and warm data, and shares how slowing down might be the most urgent step toward redesigning healthcare for the future.  Why You Should Listen You’ll rethink the phrase “humanizing healthcare”—and why it reveals how far we’ve drifted from care’s original purpose. Mark offers powerful metaphors (forest ecology, The Truman Show dome, bonsai) that reframe how we understand illness, suffering, and systems. You’ll learn why data alone can’t capture a person’s lived experience, and why healthcare must balance cold metrics with warm context. This episode gives clinicians, patients, caregivers, and leaders a new lens for imagining what healthcare could become if we widen the frame. It invites us to ask better, more beautiful questions—the kind that open new pathways instead of repeating old answers.  Episode Highlights (Timestamps) 00:00 – Welcome to Amplify  Ursula, Brent, and Anne Marie introduce the episode and its focus on perspectives that can reshape healthcare’s future. 00:34 – Meet Mark Stolow Mark is introduced as a thought explorer and founding director of People Before Patients, with more than 20 years in the human development and health space. 01:04 – Mark’s origin story  How caring for his mother during severe bipolar episodes shaped his lifelong interest in human suffering, psychology, and healing. 02:28 – Eastern philosophies and “the wisdom of anxiety”  Mark shares how Buddhist and Indian schools of thought influenced his academic and personal exploration of the mind. 04:00 – What does “humanizing healthcare” really mean?  Why the phrase surprises Mark, and what it reveals about how far we’ve drifted from a human-centered understanding of care. 05:45 – A family carrying the weight  Mark reflects on growing up in a household affected by mental illness and what he wishes the family had understood earlier. 07:54 – Healthcare professionals are longing for humanness too  The increasing dissatisfaction and yearning for meaning among clinicians. 08:56 – The forest metaphor: Healthcare as a living ecology  How interconnected systems like forests can teach us more about care than industrial models. 11:00 – What’s getting in the way? The limits of industrial thinking  Why healthcare’s “input-output” mindset fails to capture the complexity of human lives and chronic illness. 12:52 – Expanding the edges of illness  Cancer isn’t only what shows up on scans—Mark describes its ripple effects across relationships, identity, and daily life. 13:45 – Discreet solutions to complex problems  Why industrial solutions are often partial—and what’s missing. 14:38 – A better metaphor: ecological thinking  Shifting from centers and hierarchies to interdependence and mutuality. 16:00 – Ask a more beautiful question  What makes a question “beautiful,” why it requires patience, and how it helps us understand pro

A routine nudge from a family doctor changed everything. After being sent for a mammogram she had delayed, Share was diagnosed with stage 0, triple-negative breast cancer—caught extraordinarily early. In this candid conversation, she walks us through that phone call, the whirlwind of next steps, and the mindset and micro-supports that helped her stay grounded: humor, weekly friend check-ins, complementary therapies, and clear self-advocacy. We also talk about what truly helpful support sounds like, why routine screening matters (even without symptoms), and how this experience is shaping her life, work, and a new legacy-preserving project for families. Why listen A real-world case of early detection saving options—and likely outcomes Practical scripts for self-advocacy when guidelines and funding create friction Compassionate guidance for friends & family: what to say, how to show up, and when to just listen An uplifting reminder that attitude and humor are legitimate forms of support  Key moments 00:01:02 — The curveball: A proactive GP flags an overdue mammogram; results move quickly to ultrasound and biopsy. 00:05:00 — “Triple-negative” at stage 0: Why speed mattered; a second tiny tumor was found by surgery day. 00:06:07 — The GP everyone deserves: Thorough history, time to listen, and even a hug. 00:11:00 — Two diagnoses in one day: Processing the news and choosing a forward plan. 00:12:00 — Building a circle of support fast: Reiki, self-hypnosis audio, nutrition plan, acupuncture & herbs. 00:13:05 — “Don’t should me”: Responding to others’ expectations about how to feel. 00:17:32 — Feeling seen: The power of two close friends and brave, non-invasive check-ins. 00:20:08 — Daily gratitude practice: Coffee, quiet, noticing small joys. 00:25:30 — Screening: No symptoms, no pain—still cancer. Don’t delay routine tests. 00:27:14 — Mindset matters: “Cancer loves despair.” Choose light, and ask for help if you can’t find it. 00:28:03 — Work & legacy: Launching Film & Life to preserve family memories. 00:30:14 — What she’s reading: Murder mysteries and JD Robb’s In Death series. 00:29:13 — Raiders fan for life: Loyalty, teamwork, and showing up to the end.  Resources & mentionsRoutine screening: talk to your GP about what’s recommended for your age & history and what’s available beyond funded programs.Books: JD Robb — In Death series (futuristic detective fiction).Share’s company: Film & Life — helping families preserve their stories through legacy videos and media digitization.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.  

Episode Summary What happens when a physician becomes the patient—and then an entrepreneur? Pediatric endocrinologist Dr. Shazhan Amed shares her harrowing, transformational journey through toxic epidermal necrolysis (TEN), a rare, life-threatening reaction often triggered by medications. Shazhan opens up about pain, fear, advocacy, and the moments of kindness that sustained her. She then connects those lessons to why she founded Haibu Health: to pair empathy with data and improve how teams communicate, coordinate, and care—especially in pediatric diabetes. Why You Should Listen Rare, lifesaving insight: Understand toxic epidermal necrolysis from the inside—how it presents, why minutes matter, and what compassionate care looks like in crisis. Practical advocacy tips: Concrete ways families can protect sleep, manage pain, and coordinate care—the small changes that change outcomes. Clinician perspective, transformed: Hear how becoming a patient reshaped a physician’s views on communication, documentation, and empathy. Innovation with heart: See how Haibu Health blends data + humanity to improve team-based care in pediatric diabetes (and beyond). Leader playbook: Mentorship, defining purpose, and making uncomfortable leaps—how to build mission-driven work that lasts. Caregiver validation: If you’ve stood bedside, you’ll feel seen—and leave with language and ideas to be heard in the system. Actionable takeaways: Simple practices any clinic can adopt tomorrow: batch vitals, explain the plan, involve caregivers, and treat kindness as care. Timestamps 00:00 – Welcome & setup: why this story matters 01:16 – Who is Dr. Shazhan Amed: clinician, researcher, founder 02:50 – What is toxic epidermal necrolysis (TEN) and how it presents (connection to SJS/TEN spectrum) 06:39 – Mentors who changed everything—from lab to fellowship to leadership 10:06 – Pediatrics is relational: caring for the child and the family 13:11 – The day life flipped: fever, blisters, rapid decline 15:39 – ICU & burn unit: pain, vision loss, and the sound of urgency 18:58 – Advocacy in action: batching vitals, protecting sleep, controlling pain 21:00 – Music therapy & humanity at the bedside 23:56 – Caregiver trauma and the physician who empowered her husband 29:14 – Coming home: support networks and the non-linear path to discharge 30:01 – Lessons for clinicians: time is gold; communicate with empathy 31:36 – From insight to impact: the origin of Haibu Health 36:28 – Leading with purpose: defining a personal “why” 39:00 – Joy & recovery: sabbatical, family time, tennis, and a travel gem (Matera, Italy) 41:26 – Closing, calls to action, and where to connect 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 

 Trigger warning This episode includes discussion of severe postnatal mental health challenges, including postpartum psychosis, hospitalization, and panic. If you or someone you know needs medical assistance, please contact your healthcare professional. If you’re in Canada and need support right now: Call or text 9-8-8 – Suicide Crisis Helpline, available 24/7/365, bilingual. Youth & young adults: Kids Help Phone 1-800-668-6868 or text 686868 (24/7). Find additional federal & provincial/territorial resources at Canada.ca/mental-health.  If you or someone you know is in immediate danger, call 9-1-1.    Why You Should Listen When new motherhood collides with a medical emergency, sleepless nights, and overwhelming pressure, the result can be life-threatening—but also deeply misunderstood. In this raw and courageous conversation, Cara shares her firsthand experience with postpartum psychosis, from a terrifying onset to full recovery and renewal. Whether you’re a parent, clinician, or advocate, this episode reminds us how vital it is to listen without judgment, recognize early warning signs, and respond with compassion and urgency. Cara’s journey sheds light on both the fragility and strength of mothers navigating unseen battles—and the power of the right support at the right time.  Episode overview When Cara welcomed twins via C-section in Scotland, early feeding difficulties, sleep deprivation, and a sudden medical complication spiraled into postpartum psychosis. After a terrifying crisis and an ambulance call, Cara was admitted to a Mother–Baby Unit, where specialized, compassionate care helped her stabilize, bond safely with her babies, and reclaim her sense of self. Years later—now a nurse—she shares what recovery looks like, how family and clinicians can recognize red flags, and why empathetic, practical support matters. What we cover Postpartum depression vs. postpartum psychosis: how they differ; why psychosis needs urgent medical attention.   Cara’s timeline: birth complications, NICU stay, sleep loss, escalating symptoms, and a critical turning point.   Barriers to help: “It’s just motherhood” minimization, stigma, and the role of a strong advocate (a paramedic, in Cara’s case).   Specialized care: the Mother–Baby Unit model—why it works, what stabilization looked like, and family decision-making when capacity is limited.   Life after psychosis: fear of relapse, building inner strength, self-advocacy, and returning to caregiving and work with renewed empathy.   How to support a parent in crisis: listen and validate, reduce judgment, watch for abrupt changes, and help them access professional care quickly.   Episode Highlights 00:00 Welcome & content warning   01:30 Level-setting: what postpartum psychosis is (and isn’t)   06:45 Pregnancy, twins, and birth story   10:20 Medical complication; babies in NICU; no sleep   15:00 “Something’s wrong”: self-advocacy meets minimization 

In this episode, Ursula and Christine are joined by Tara Cowling, Founder and President of Medlior Health Outcomes Research—a Canadian leader in real-world evidence (RWE), health technology assessment (HTA), and health outcomes research. Together, they explore how health data can be transformed into actionable insights that improve care, trust, and outcomes for patients. Tara shares her journey from her early work with NICE in the UK to leading an independent research consultancy in Canada. She explains how better data access and health literacy can prevent missed diagnoses, improve early detection, and strengthen public confidence in healthcare systems. From data privacy and interoperability to the promise of AI and next-generation patient registries, this conversation unpacks how collaboration between patients, researchers, and decision-makers can shape a smarter, more equitable future for healthcare. Why You Should Listen Discover how data trust and transparency affect patient outcomes. Learn what “quality” means in real-world evidence and why transparency and reproducibility matter. Understand the role of health literacy and interpretation in how patient data is collected and used. Hear how AI and predictive analytics are redefining the future of healthcare data. Explore how long-term patient registries and real-world insights can drive policy change and better funding decisions. Episode Highlights [00:02:00] Meet Tara Cowling — Founder and President of Medlior Health Outcomes Research shares her journey into data and healthcare innovation. [00:07:15] When data goes wrong — real stories that show why accessible, linked data can save lives. [00:10:00] Mental health and data — Tara explains why mental health checkups should be as routine as dental visits. [00:12:30] Health literacy and trust — how communication and transparency build confidence in data use. [00:16:00] Defining quality data — what makes research reliable: transparency, reproducibility, and context. [00:21:00] The promise of AI and real-world evidence — how technology and patient data can drive personalized, equitable care. [00:22:30] Building the future — Tara’s vision through the Avita Health Foundation for long-term patient registries that shape better health systems.  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.  

How do you embed patient voices across a complex, research-driven organization—and across a country’s health system? Brigitte Nolet shares how her own journey with psoriatic arthritis shaped her leadership, why Roche Canada created a Chief Patient Experience Officer role held by someone with lived experience, and how collaboration across government, industry, and patient groups can accelerate access to innovative medicines in Canada.Why you should listenA leader’s lived experience guiding decisions that affect millions of patients.Practical ways to make patient inclusivity real (beyond town halls and surveys).Inside Roche Canada’s Patient Co-Creation Council and what makes it work.Why the new Chief Patient Experience Officer role matters—and how it was co-designed with 65+ stakeholders.What Canada can learn from Switzerland and Belgium on integrated care and health data.A candid look at Canada’s access timelines and the momentum to improve them.Actionable takeaways for leaders: listen more, connect more, and don’t anchor in your own beliefs.Episode highlights (timestamps)00:00 – Welcome & introductions.01:00 – Brigitte’s path: leading Roche Canada and why her psoriatic arthritis shapes how she leads.03:45 – Roche Canada at a glance: ~2,000 employees, end-to-end from research to commercialization.06:00 – Four countries, four systems: what moving internationally taught Brigitte about continuity of care.11:30 – System design that works: a Swiss clinic model with same-visit labs + 30-minute consults; Belgium’s fast health-data platforms.14:00 – Listening as a leadership discipline: the Patient Co-Creation Council and learning from rare-disease communities.19:00 – Creating the Chief Patient Experience Officer role (must include lived experience); how 65+ stakeholders shaped it.22:00 – Momentum beyond industry: Canada’s Drug Agency adding patient voice at the board level.26:00 – Innovative Medicines Canada (IMC): sector snapshot (100k+ jobs, $3.2B annual R&D, $18B economic activity) and the shared goal of faster access.29:30 – The frontier: where biology meets informatics—gene therapies, CAR-T, subcutaneous, oral oncology, AI.31:30 – What’s next: societal perspectives in HTA, interprovincial data interoperability, and cutting red tape.35:00 – Rapid-fire: leadership mantra—“listen more, connect more”—and book recs (Kate Quinn).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.

Welcome to Amplify: Elevating Patient Voices, a podcast powered by Patient Voice Partners. In each episode, hosts Ursula Mann and Brent Korte bring together patients, caregivers, and healthcare change makers to spark bold conversations and build a system that truly listens.In this episode of Amplify, Ursula and Brent welcome a new member of the Patient Voice Partners team — Izi, a recent graduate bringing fresh energy, digital storytelling skills, and a passion for amplifying underrepresented voices. She shares her journey from student leadership to nonprofit advocacy, what inspires her to pursue work that helps others, and why trust and representation are so vital in healthcare.Why you should listenDiscover how fresh perspectives from younger voices can energize teams and open new pathways for impact.Learn why trust and representation are key when amplifying patient and caregiver voices.Hear how Izi turned student leadership and nonprofit advocacy into a passion for healthcare storytelling.Be inspired by her advice on embracing uncertainty, resilience, and learning through failure.Episode highlights[00:01:30] Meet Izi: her background, education, and early leadership experiences.[00:03:40] Launching a YouTube channel and leading a team as VP of Video.[00:05:00] Lessons from nonprofit work and the power of digital storytelling to build community.[00:06:00] Why healthcare — and how personal identity shaped Izi’s passion for advocacy.[00:07:30] Building trust and creating safe spaces for patients to share their stories.[00:09:45] What Izi looks forward to learning and contributing at Patient Voice Partners.[00:10:50] Embracing uncertainty, failure, and resilience as part of the journey.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.

In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Brent Korte sit down with their teammate Christine Pisapia for a deeply personal and professional conversation about her decades-long journey in healthcare.Christine’s path has taken her from physiotherapy to leadership in the pharmaceutical industry, to her current work in advocacy and volunteering—all tied together by one common thread: her passion for improving lives. As both a professional and a caregiver to multiple family members, Christine brings unique insights into the realities of healthcare and the transformative power of patient and caregiver voices.She shares how her own experience as a living kidney donor to her brother reshaped her perspective and ignited her advocacy in transplant care, policy, and peer support. Christine also reflects on the ripple effect of caregiving, the gaps she sees in our healthcare systems, and why caregivers must be recognized as critical partners in care.Why you should listenDiscover how personal and professional experiences intertwine to shape meaningful healthcare change.Learn why patient and caregiver voices are essential at every stage of decision-making, from research to policy.Hear Christine’s inspiring story as a living kidney donor and her advocacy for equitable access to transplantation.Gain insight into the challenges—and the opportunities—for caregivers within healthcare systems.Episode Highlights[00:00:46] Christine’s career journey — from physiotherapy, to pharma leadership, to her current work in advocacy and volunteering.[00:03:00] Learning from patients — why hearing lived experiences provides insights that no textbook or professional expertise can match.[00:04:30] Kidney transplant advocacy — Christine shares her work in this space and why listening to patients should shape funding and policy decisions.[00:07:12] Living donation story — Christine recounts donating a kidney to her brother and how the experience transformed her life.[00:08:28] The ripple effect — how caregiving and donation impact not just the patient, but families, friends, and communities.[00:09:32] The caregiver’s role — why caregivers need greater recognition, resources, and support within healthcare systems.[00:11:42] A call to action — why including patients and caregivers at every decision-making table is critical to addressing today’s healthcare challenges.[00:12:27] Why Patient Voice Partners — Christine shares what drew her to join the team and why she believes in its mission.Join our email list to get new episode updates here.

From Engagement to Inclusivity: A Conversation with Anne Marie HayesIn 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.Why You Should ListenLearn the key difference between patient engagement and patient inclusivity—and why it matters.Hear Anne-Marie’s moving personal story of loss and how it fuels her advocacy.Discover how language and terminology shape power dynamics in healthcare.Gain insights into co-creation: practical ways patients can influence education, policy, and innovation.Be inspired to challenge assumptions and embrace uncomfortable truths in the pursuit of better care.Episode Highlights[00:02:00] Anne-Marie shares why she joined Patient Voice Partners and the mission that excites her most.[00:03:30] Personal loss shapes professional passion: the story behind her advocacy.[00:05:00] Engagement vs. inclusivity—why the distinction is critical.[00:07:00] Language matters: honoring preferences and seeing the whole person.[00:10:00] Expanding “patient perspectives” and ensuring representation.[00:12:30] The courage to ask harder questions and listen when it’s uncomfortable.[00:14:30] Case study: co-creating a product monograph with patients in Canada.[00:15:45] Key takeaways: be curious and be creative.

What happens when you bring law, data, and patient stories together?In this episode of Amplify, Ursula and Brent sit down with their teammate Barry Liden to explore his unconventional journey—from law school and computer programming to leading work in patient engagement.Barry shares how his early passion for data and advocacy reshaped into a mission: ensuring that patient perspectives are not an afterthought, but rather a driving force in decision-making across healthcare systems.💡 You’ll learn:Why patient voices are critical in health technology assessmentsHow a study Barry published helped shift a Canadian HTA decisionThe impact of patient listening sessions on engineers, innovators, and product designWhy diversity of perspectives matters beyond just the “N of one”📌 Quote from the episode:“Sometimes you ask people what’s important, and they’ll give you the expected answers. But then someone comes in with a different perspective, and it changes everything.” — Barry LidenEpisode Highlights [00:00] Welcome to Amplify — Ursula & Brent introduce the episode and guest, Barry Liden[01:00] Barry’s journey from law school and computer programming to patient engagement[03:00] Why patient perspectives often get overlooked in traditional decision-making[05:00] How Barry’s published study helped Ontario incorporate patient preferences in HTA decisions[07:00] Global examples: how Canada and Australia are evolving their use of patient preference data[09:00] A powerful patient listening session that shifted engineers’ perspectives on product design[12:00] The rise of patient preference studies worldwide and why diversity of perspectives matters[14:00] How unexpected patient insights can redefine outcomes in healthcare[15:00] What excites Barry about joining Amplify and Patient Voice Partners as a co-host[17:00] Closing reflections and call to action🎧 Listen now and discover how listening deeply—to data, to patients, to unexpected voices—can transform healthcare.