Patient and Care Partner Community

Providing a supportive space for patients, families and care partners.

Fundamental to all we do at The Beryl Institute is understanding, supporting and acting on the lived experience of those receiving care. In partnership with our Global Patient and Family Advisory Board, we offer this community as a place for Patient and Family Advisors (PFAs), patients and care partners, defined as a patient’s circle of support, to make connections and find resources curated and created by their peers. 

These resources are intended as companions to the full breadth of offerings from the Institute, and while they were compiled for patients and care partners, we believe they can also offer insight for healthcare professionals seeking a deeper understanding of patient and care partner perspective.

We invite patients, care partners and PFAs to join the Patient and Care Partners special interest community to receive updates about new publications, notification of upcoming events and calls for feedback and original writings.

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Stories That Transform: A Guide to Storytelling in Healthcare

Storytelling Guide

This complimentary comprehensive resource is designed for patients and family care partners who wish to share their personal journeys to drive meaningful change in healthcare, as well as for organizations looking to cultivate a storytelling culture within their institutions to promote greater healing.

Drawing from the collective insights and lived experiences of GPFAB members, this guide offers valuable tools and inspiration for harnessing the power of storytelling to foster empathy, connection, and transformation in healthcare.

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We are not visitors: Working together with family caregivers and care partners

Care Partner Guide

This unique resource for family caregivers and those who support them defines the major components of the family caregiver experience and how they differ from the patient experience, as well as providing tools for caregivers to use as they advocate for themselves and those they care for.

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Humanizing Healthcare Through Art

Facing a health challenge usually brings up a lot of emotions and can cause patients and loved ones to deeply reflect on life in a new way. Out of this may come a deep need to express these feelings and new perspectives. One way to do that is through art. Whether it’s a painting, a poem or a photograph, art can help us heal while giving others a window into the healthcare experience. Each quarter, The Beryl Institute will feature art created by patients and families that expresses some aspect of their experience.

If you are a patient or care partner who wants to share your art as a way to humanize healthcare, please click here to submit your artwork for consideration!
Submit Artwork View Submitted Work

PX Strategic Lenses Reflections

The intent of this series is to present our perspective on patients’ and families’ lived experience for each of the strategic lenses of The Beryl Institute’s Experience Framework. The Experience Framework is a community-developed tool that acknowledges the integrated nature of healthcare experience and is comprised of eight strategic lenses that help shape patient experience efforts.

  1. Patient, Family & Community Engagement: 4 Ways to Promote Co-Design
  2. Quality & Clinical Excellence: Four Ways of Promoting Co-design
  3. Environment & Hospitality: 4 Considerations for Creating an Excellent Experience for Patients and Families
  4. Culture & Leadership: The Impact of Patients and Families on Decision-Making

PX Paper Reflections

Patient and Care Partner Reflections are companion pieces to patient experience resources, such as PX papers and webinars, sharing valuable perspective from the lens of those receiving care.

Patient and Care Partner Reflections are companion pieces to patient experience resources, such as PX papers and webinars, sharing valuable perspective from the lens of those receiving care. Look for the Reflection Buttons on resource pages.

PX Paper Reflections

White Papers

wooden blocks against a white backgound meant to represent healthcare excellence; text at the bottom of the image reads white paper
White Paper

Reigniting the Human Experience: Strategies for Getting Back to Basics

Published April 24, 2025

The Beryl Institute announces the release of its latest white paper, Reigniting the Human Experience: Strategies for Getting Back to Basics. Grounded in insights from The Beryl Institute community, this paper explores the impact of straying from the core principles of healthcare excellence and makes a compelling case for re-aligning efforts around proven, human-centered strategies.

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a woman wearing a mask carries a cardboard box of bananas at a food drive, meant to represent essential hospital; text at the bottom of the image reads white paper
White Paper

A Commitment to Human Experience in Essential Hospitals

Published July 11, 2024

A Commitment to Human Experience in Essential Hospitals highlights the innovative practices of essential hospitals in enhancing the human experience in healthcare. These safety-net hospitals are crucial for providing care to underserved and marginalized communities, addressing complex medical needs and significant socio-economic challenges. Despite facing financial constraints and staff shortages, essential hospitals excel in creating

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a plastic bag containing clothes with the words "patient belongings" on it; text at the bottom of the image reads white paper
White Paper

Where Are My Things? Best Practices for Safeguarding Patient Belongings in Hospitals

Published January 24, 2024

Managing patient belongings is a persistent and complex challenge faced by nearly all hospitals and healthcare systems. When personal items are misplaced or lost during a patient’s hospital stay, the consequences go beyond inconvenience. Financially, hospitals may be liable for compensation or replacement of lost items, and operational resources are often diverted to investigate and

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a woman holding a tablet with a stethoscope sitting and engaging in conversation with a group of elderly people
White Paper

Listening Organizations: Elevating the Human Experience in Healthcare through the Lived Experience of Patient & Families

Published May 18, 2023

Experts from around the world in the field of patient and family partnerships come together to explore the evolving role of Patient and Family Advisors (PFAs) in shaping the future of healthcare. This thought-provoking discussion highlights the importance of truly listening to and learning from the lived experiences of patients and families to drive meaningful

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a person in a hospital bed, communicating with someone on a phone through a video call
White Paper

Maintaining Human Experience in a New Era of Virtual Connection

Published July 16, 2020

This paper is grounded in firsthand accounts from organizations and patients and family members who highlight the cause and effect of virtual solutions in medical environments.

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a young woman sitting with her arm around an older woman; family caregiver
White Paper

The Role of Family Caregivers throughout the Patient Experience

Published October 13, 2016

This paper explores the value and impact caregivers have on the broader patient experience efforts in healthcare.

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patient family partners in a hospital room
White Paper

Voices of Patients and Families: Partners in Improving Patient Experience

Published June 22, 2016

This paper shares insights on patient experience gained in speaking with 18 courageous patients and family members from healthcare practitioners to patient advocates.

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Podcasts

Podcast

Enhancing Patient Experience: A Night Shift ER Doctor’s Passion Project

Published October 4, 2024

Dr. Donald Wickline of Cone Health, drawing from his experience as a night shift emergency room physician, explores the art and science of communication from a staff/provider engagement perspective. He highlights Cone Health’s C.U.R.O. communication model as a crucial framework for navigating sensitive and critical conversations with patients. This model provides physicians, including Dr. Wickline,

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Podcast

Broaden the Scope of What You Consider Experience

Published August 26, 2024

Stacy Palmer, Senior Vice President & COO of The Beryl Institute, sits down with Pattie Cuen, Senior Vice President of Jarrard Inc., to discuss a recent consumer survey about public values in healthcare experience. Listen in as Cuen shares key insights and emphasizes the importance of seeing the bigger picture of experience by focusing on

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Podcast

You Can’t Go Wrong If You Do Right by the Patient

Published July 18, 2024

Julian Manriquez, Supervisor for Hospitality Services at City of Hope, discusses how his 110-acre campus strives to provide visitors with a five-star transportation and wayfinding experience through a unique Ambassador program. Listen in as he describes the critical roles of innovation and evolution throughout the program’s beginnings, survival during the COVID-19 pandemic, current operations, and

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Podcast

We’re All Emotional Beings: That’s What It Is to Be Human

Published October 5, 2023

Ben Larsen, Experience Advisor at Baylor Scott & White Health, discusses the significance of human connection and the relationships we build with patients. Listen as he talks about communicating in service of a relationship, origin stories and the importance of practicing compassion and empathy.

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Podcast

“When we share our stories, there’s a level of healing”

Published August 4, 2023

When Monica Jones became a mother of children requiring complex care, she realized her calling in healthcare. Listen as she shares her family’s experience in navigating the healthcare system on her children’s behalf and how it inspired her to join the patient and family experience team at the Children’s Hospital of Philadelphia.  

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Podcast

“I know what’s on the other side of my read”

Published August 29, 2022

Hear the lived experience of what it’s like when a family member is going through cancer treatment.

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Podcast

“My lungs on the x-ray looked like ground up glass”: A COVID Recovery Story

Published August 8, 2022

Bob Pollard was a healthy 62-year-old when he was diagnosed with COVID-19, in the hospital and unable to breathe with a high likelihood of not making it through the night.

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Webinar Recordings

Webinar

Transforming the Inpatient Hold Experience Through Partnership

Published April 7, 2026

PXE Credit Available

Discover how collaboration and innovation improved the experience of patients holding in the Emergency Department at Tampa General Hospital. Through PFAC partnership, guest services rounding, volunteer engagement, and technology enhancements, this initiative elevated comfort, communication, and care coordination. Attendees will gain replicable tools to improve experiences in nontraditional care settings. Speakers -Amy Matthews, Manager of

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Webinar

Where Do We Go From Here? Improving Hospital Wayfinding to Reduce Stress and Improve Care

Published March 24, 2026

PXE Credit Available

For patients and families, getting lost in a hospital can feel overwhelming and it often shapes their perception of care before a single clinical interaction occurs. Wayfinding is more than signage; it’s a human-centered experience that affects safety, efficiency, and trust. Join this webinar to discover how thoughtful, patient-centered wayfinding can transform the hospital experience.

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Webinar

Beyond Attestation: Understanding CMS Patient Safety Structural Measures

Published March 12, 2026

PXE Credit Available

This session provides an overview of CMS Patient Safety Structural Measures with a focused look at Domain #5: Patient, Family, and Care Partner Engagement. Participants will explore the intent behind the measures, what meaningful implementation looks like beyond attestation, and why patient and family engagement is foundational to patient safety, quality, and trust. Part of

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Webinar

Tell Me 3: Aligning Quality, Safety, and Experience Through Dialogue

Published February 17, 2026

PXE Credit Available

“Tell Me 3” is a continuous improvement initiative to promote clear, consistent conversations about new medications, focusing on the name, purpose, and potential side effects. By integrating these discussions into daily workflows, the initiative strengthens patient understanding and drives a culture of quality and safety. This webinar highlights practical tools including the “Tell Me 3”

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Webinar

Collaborative Solutions for Managing Challenging Family Interactions

Published January 27, 2026

PXE Credit Available

Discover a human-centered, multidisciplinary approach to navigating difficult family interactions in healthcare. This webinar shares how teams across all levels – clinicians, leaders, and families – developed tools, algorithms, and training processes to ensure safety, teamwork, and emotional support. Attend this webinar to learn practical strategies for creating healing environments and fostering collaboration to address

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Webinar

Inclusive Perspectives: Diversifying Patient and Family Advisory Councils

Published December 4, 2025

PXE Credit Available

Understanding that diversity and inclusivity within Patient and Family Advisory Councils (PFACs) are crucial for addressing the evolving needs of the community, Inova redesigned its advisor recruitment and engagement strategy. Initially met with resistance from some long-term PFAC advisors, Inova’s new approaches—including the introduction of term limits, revamped recruitment efforts, enhanced cross-generational digital presence, and

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Webinar

PFAC Series – Webinar/Panel: Sustaining & Growing a PFAC

Published November 21, 2025

Explore approaches to keep your PFAC thriving over time, expand its influence, and ensure it remains a vital voice in shaping care experiences. Whether you are launching your first PFAC, breathing new life into an existing one, or ensuring long-term success, these sessions will equip you with practical strategies, real-world examples, and expert insights. As

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Blogs

Blog

Amplifying Youth Voices: The Importance of Direct Pediatric Patient Feedback

Published March 13, 2026

Alexa Petta, Child Life Specialist The Hospital for Sick Children (SickKids) The collection of experiential survey data is a practice all too familiar in Patient and Family Experience (PFX). Surveys allow institutions to collect large amounts of quantifiable data through resource-lite methods, illuminating strengths and opportunities that improve the quality of care. Who does the

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Blog

Beyond a Seat at the Table: Building the Infrastructure for True Patient and Family Partnership

Published February 26, 2026

Darcel Jackson, Manager, Patient and Family Centered Care  Paige Warner, PFA Engagement Specialist  Children’s National Hospital   For years, patient and family engagement in healthcare has been framed as offering “a seat at the table.” While well-intended, that language often limits partnership to presence rather than influence. Our experience taught us that families don’t need a

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Blog

Physician Empathy: Improving Patient Experience through Listening and Understanding

Published December 23, 2025

By Jackie-Meyers Thompson Question: “Doctor, my back is hurting. It started about two weeks ago and hasn’t let up. Do you know what could be causing this?” Answer: “You know you’re overweight don’t you? That could cause the back pain you’re complaining about” This patient portal exchange certainly leaves a lot to be desired when

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Blog

Reflections on White Paper: Defining and Advancing the Use of AI in Healthcare Experience

Published December 11, 2025

By: Jamie Colbert, MD, MBA  I chose to become a physician for the same reason many people are drawn to this profession – it was about making a difference in the lives of others. This act of providing care involves developing a relationship between the caregiver and the patient. For me and many colleagues, it

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Blog

Communication Solution: Stop (just) Training Doctors, Start Training Patients

Published November 14, 2025

Gabby Ceccolini, MS Healthcare Communication Specialist The Problem with Patient-Centered Care For decades, our healthcare system has poured time, money, and innovation into training doctors to communicate better; however, what if we are overlooking the other half of the equation? The term “patient-centered” began appearing in medical literature in the late 1980s. It wasn’t until

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Blog

The Compassionate Care Canvas: A Vision for People-Centred Health

Published October 23, 2025

Shana Haberman Manager, People-Centred Care  North York General   At North York General (NYG), compassionate care is more than a value — it’s a culture, a practice, and a promise. As NYG launched its new 10-year strategy, grounded in the mission of People-Centred Care for a healthier community, the need to define compassionate care in a

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Blog

Protecting What Matters: 8 Strategies for Safeguarding Patient Belongings

Published August 15, 2025

Kristine Buck University of Vermont Medical Center I would like to tell you a story about “Teddy,” the bear. Teddy had been a vital part of a patient’s family for over 60 years, providing comfort, supportive listening, and unconditional love, until the day the beloved bear was unfortunately whisked away with the hospital bedding and

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ELEVATE PX Scholarships

ELEVATE PX is a virtual gathering bringing together the voices of the global community committed to elevating the human experience in healthcare. To support engaging more patients and family members in the overall patient experience conversation, we are excited to offer a limited number of scholarships to ELEVATE PX for patients and family members actively engaged in improving healthcare.

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Special Membership Rate

In order to make membership more accessible for patients and care partners, The Beryl Institute offers a variety of membership opportunities at a special discounted rate for patients and care partners. Members receive access to all patient experiences resources from The Beryl Institute. 

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Special Thanks

Special thanks to the Global Patient and Family Advisory Board (GPFAB) for their leadership and hard work in creating content aligned with the needs of our patient and care partner community. 

View GPFAB Members