Amplify: A Podcast Powered by Patient Voice Partners cover art

Amplify: A Podcast Powered by Patient Voice Partners

Amplify: A Podcast Powered by Patient Voice Partners

By: 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.

© 2026 Amplify: A Podcast Powered by Patient Voice Partners Hygiene & Healthy Living Physical Illness & Disease
Episodes
  • Chronic Hand Eczema: A Nurse’s Story of Pain, Work, and Family

    Chronic Hand Eczema: A Nurse’s Story of Pain, Work, and Family
    Jun 19 2026
    Sponsor Acknowledgment This episode is sponsored by LEO Pharma. LEO Pharma is a global research-based pharmaceutical company dedicated to advancing the standard of care for people living with skin conditions, their families, and society. Sponsorship helps support the Amplify podcast, but the conversation, perspectives, and final content are produced independently by Patient Voice Partners and its guests. We thank LEO Pharma for supporting conversations that elevate patient experiences and increase awareness of chronic skin conditions. Episode Summary What happens when the very hands you rely on for work, caregiving, and everyday life become a source of pain? In this episode of Amplify, Amy Wright shares her personal journey living with chronic hand eczema while working as a neonatal nurse practitioner and raising two young children. Amy opens up about the physical discomfort, emotional impact, workplace challenges, and advocacy efforts surrounding this often misunderstood condition. From delayed diagnosis and painful flare-ups to navigating triggers and advocating for safer workplace products, Amy offers an honest look at the realities of living with chronic hand eczema and why greater awareness, prevention, and support are urgently needed. Episode Highlights 03:23 – Amy shares when she first noticed something was wrong and how her symptoms began during an international trip. 05:13 – How the pandemic dramatically worsened her condition through constant handwashing and disinfectant exposure. 08:34 – The long road to diagnosis and the frustration of limited treatment options. 10:22 – What Amy learned from patient communities that she didn't learn in the healthcare system. 14:28 – The physical symptoms of chronic hand eczema—and why it's much more than "just dry skin." 16:20 – The emotional impact of visible skin conditions, including embarrassment, stigma, and everyday interactions. 17:37 – A mother's perspective: when chronic hand eczema affects the simple act of touching your children. 20:22 – How everyday products, from soap to shampoo, can become unexpected challenges. 24:15 – The reality of managing chronic hand eczema while raising young children. 28:25 – What coworkers, employers, and healthcare organizations can do to better support those living with the condition. 31:24 – Amy discusses advocacy efforts aimed at improving workplace safety and awareness. 35:29 – The hidden economic burden of chronic hand eczema on individuals and healthcare systems. 38:40 – Amy shares what she's most looking forward to outside of work and advocacy. Links & Resources Patient Voice Partners https://patientvoicepartners.com/ LEO Pharma https://www.leo-pharma.ca/en-caCanadian Association of Neonatal Nurses (CANN) https://cann.ca/ CHE Nurses' Report https://caccn.ca/wp-content/uploads/2025/05/2025-04-Final-SDEL2406_CHE-Nurses-Survey-Whitepaper_612x792_EN_S04.pdfDr. Amy Wright, RN, PhD, NP-Pediatrics, NCC-BC, is a distinguished leader in neonatal nursing and an acclaimed researcher dedicated to advancing health equity and cultural safety. As an Assistant Professor at the Lawrence Bloomberg Faculty of Nursing, University of Toronto, she bridges the gap between high-level academia and frontline clinical excellence. Dr. Wright’s program of research, funded by the CIHR and SSHRC, focuses on the experiences and needs of Indigenous parents with young children. Her work is deeply rooted in community-engaged approaches, advocating for Trauma- and Violence-Informed Care (TVIC) and the elimination of structural barriers within the healthcare system. Clinically, she maintains an active practice as a Neonatal Nurse Practitioner in the NICU at McMaster Children’s Hospital, ensuring her research remains grounded in the realities of patient and family care. A tireless advocate for the profession, Dr. Wright serves as the President of the Canadian Association of Neonatal Nurses (CANN) . Her contributions have been recognized nationally, including being named one of the "150 Nurses for Canada" by the Canadian Nurses Association, solidifying her reputation as a pivotal voice in neonatal health and advocate for Indigenous cultural safety. 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.
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    35 mins
  • Beyond Accommodation: Building Workplaces Where Everyone Can Thrive

    Beyond Accommodation: Building Workplaces Where Everyone Can Thrive
    Jun 5 2026
    Episode SummaryWhat happens when lived experience becomes a catalyst for systemic change?In this episode of Amplify, Ursula Mann and Anne-Marie sit down with accessibility consultant, speaker, entrepreneur, and founder of Accessible Creates, Sydney Elaine Butler. Sydney shares her personal journey growing up as an autistic, biracial woman navigating healthcare, education, and the workplace while learning to advocate for herself in systems that were not always designed with inclusion in mind.From childhood experiences with speech therapy and physiotherapy to becoming an award-winning HR leader and accessibility advocate, Sydney reflects on how her experiences shaped her passion for creating more inclusive workplaces and human-centered systems. The conversation explores disability, neurodiversity, self-advocacy, racial identity, workplace accommodations, hiring practices, and what organizations can do to move beyond compliance toward true inclusion.This thoughtful discussion offers practical insights for employers, leaders, caregivers, and anyone interested in creating environments where people can bring their full selves to work and thrive.Why You Should ListenLearn how lived experience can drive meaningful change in healthcare and workplace systems.Hear Sydney's inspiring journey from childhood speech therapy to becoming a recognized HR leader and speaker.Understand the realities of self-advocacy for people navigating disability, neurodiversity, and healthcare systems.Discover common gaps between organizational intentions and truly inclusive workplace practices.Gain practical strategies for improving accessibility, accommodations, recruitment, and employee engagement.Explore how flexibility and psychological safety can unlock innovation and better outcomes for everyone.Episode Highlights02:52 – Sydney shares her early experiences with autism, speech therapy, physiotherapy, and navigating healthcare as a child.04:30 – Lessons in self-advocacy from her mother and how those skills shaped her life and career.05:58 – What Sydney wishes someone had told her during difficult moments growing up.07:08 – Reflecting on progress, resilience, and the powerful "love letter" she would write to her younger self.08:30 – From speech therapy challenges to presenting on stage at the Canadian HR Awards.09:54 – How a passion for helping people led Sydney into a career in Human Resources.11:24 – Navigating healthcare as a biracial woman and the importance of being heard.12:23 – A simple but meaningful lesson in self-advocacy during a medical procedure.13:52 – Why "being louder" often means persistently ensuring your voice is heard.15:20 – The impact of racial bias and assumptions in healthcare settings.17:28 – Why patient voices matter and how collective advocacy creates change.17:58 – Advice for parents on teaching children to advocate for themselves.20:23 – Understanding autism, neurodiversity, masking, and self-acceptance.24:09 – The gap between organizational intentions and truly inclusive workplaces.26:06 – Why accessibility legislation is only the beginning, not the destination.27:34 – The importance of standardizing inclusive practices across organizations.28:30 – How diverse ways of thinking create opportunities for innovation.29:00 – Rethinking accommodations and supporting people through changing needs.30:57 – Practical steps organizations can take to better listen to employees.32:22 – Why employee silence is not always a sign that everything is working.33:19 – Embracing mistakes, learning, and building stronger leadership.34:16 – Making hiring and interview processes more accessible and inclusive.37:41 – Sydney shares how she recharges through nature walks and time with her dog, Oreo.LinksAccessible Creates: https://www.accessiblecreates.ca/Connect with Sydney Elaine Butler: https://www.linkedin.com/in/sydney-elaine-butler/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.
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    34 mins
  • From Caregiver to Changemaker: Transforming Rare Disease Advocacy Through Policy

    From Caregiver to Changemaker: Transforming Rare Disease Advocacy Through Policy
    May 29 2026
    Episode SummaryWhat 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 ListenIf 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 Highlights04:16 – 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.LinksLearn more about EveryLife Foundation for Rare Diseaseshttps://everylifefoundation.org/Learn more about Patient Voice Partnershttps://patientvoicepartners.com/Connect with Patient Voice Partners on LinkedInhttps://www.linkedin.com/company/patient-voice-partners/Listen to more Amplify episodeshttps://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.
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    32 mins
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