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 Listen

• To gain a global perspective on how patient voices are being integrated into healthcare decision-making
• To understand what’s changing in the Middle East—and what remains surprisingly similar worldwide
• To hear real-world reflections from inside the pharmaceutical industry
• To explore how patient insight can shape better strategy, access, and outcomes
• To consider what the future of patient-centered healthcare could look like across systems

Episode Highlights

00:03:32 — 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.