One patient’s experiences and expectations in the healthcare system: Complicated and critical illness with rare diagnosis described by his advocate
Published April 23, 2019
Related content
-
Patient Family & Community Engagement
Taking time and making space for patient and caregiver partners
Published August 8, 2025
Patient and caregiver engagement is a paramount element to ensure the voice of lived experience is integrated and prioritized in research. However, what it looks like to actually participate in authentic patient and caregiver engagement can be challenging without understanding the experience of our patient and caregiver partners. I had the honour of interviewing a
Learn more -
Infrastructure & Governance | Patient Family & Community Engagement
PFAC Restructure: Expanding Councils, Enhancing Quality, Securing Leader Buy-In
Published October 16, 2025
Join us for an in-depth session on innovative strategies for restructuring Patient and Family Advisory Councils (PFACs) to align with organizational goals and improve patient-centered care. Discover how to expand PFACs to better meet evolving needs, enhance the quality of patient engagement, and secure vital leadership support. Learn about the PFAC Lunch and Learn series,
Learn more -
Innovation & Technology | Patient Family & Community Engagement | Policy & Measurement
When Feedback Gets Real: Turning Insights into Action
Published July 21, 2026
11:00 AM PT / 2:00 PM ET / 7:00 PM London – In a world of unfiltered feedback, healthcare leaders must listen with intention and respond with purpose. This webinar explores how to turn candid patient, family, and staff input into targeted action. Through real-world examples, attendees will gain tools to identify patterns, foster accountability,
Learn more
Ask questions, share insights and connect with other experience leaders.
PX ConnectBecome a member for access to this resource and more:
- Live and On-demand Webinars and Connection Calls
- PX Papers, Case Studies and Research Reports
- PX Connect Online Community
- Discounts on Learning Programs and Events
Become a member for access to this resource and more:
- Live and On-demand Webinars and Connection Calls
- PX Papers, Case Studies and Research Reports
- PX Connect Online Community
- Discounts on Learning Programs and Events
One patient's experiences and expectations in the healthcare system: Complicated and critical illness with rare diagnosis described by his advocate