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 & mentions

• Routine 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.

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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 listen

• A 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 listen

• Discover 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 listen

• Discover 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 Hayes

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

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

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

Why You Should Listen

• Learn 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.