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.

Subscribe to the Newsletter

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.

Read Now

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.

Read Now

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

PX Papers

PX Paper

A Commitment to Human Experience in Essential Hospitals

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

Learn More
PX Paper

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

Managing patient belongings is a challenge for almost all hospitals. Losing a patient’s belongings has a financial impact on the institution and an emotional impact on patients and families. “Where are my things?” shares a collection of best practices for managing personal belongings in hospitals and transforming the human experience in healthcare.

Learn More
PX Paper

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

Experts from around the globe in the field of patient and family partnerships explore what is needed to evolve the role of Patient and Family Advisors (PFAs) so healthcare organizations can learn from their experiences. Contributors identify what they see as gaps in PFA utilization and share their hopes for expanded use in the future.

Learn More
PX Paper

Maintaining Human Experience in a New Era of Virtual Connection

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.

Learn More
PX Paper

The Role of Family Caregivers throughout the Patient Experience

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

Learn More
PX Paper

Voices of Patients and Families: Partners in Improving Patient Experience

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

Learn More

Podcasts

Podcast

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

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,

Learn More
Podcast

Broaden the Scope of What You Consider Experience

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

Learn More
Podcast

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

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

Learn More
Podcast

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

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.

Learn More
Podcast

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

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.  

Learn More
Podcast

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

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

Learn More
Podcast

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

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.

Learn More

Webinar Recordings

Webinar

Applying Equity, Diversity, and Inclusion in Co-design with Patient Experience Partners

PXE Credit Available

Watch this webinar to learn about the Patient Experience Partner (PXP) Program at North York General Hospital (NYGH), a 480-acute care bed community academic hospital in Toronto, Ontario, Canada. The presenters will provide an overview of a specialized volunteer program for the purpose of informing hospital service design through the patient and caregiver lens. PXPs

Learn More
Webinar

Survivor Support Programs Strengthen Patient Experience

PXE Credit Available

In this webinar, participants will gain in-depth knowledge of how providing survivor support programs can enhance the human experience of health care. Survivor support programs are the ideal mechanism to facilitate compassionate connected care between patients, families, and members of the care team. Learning Objectives – Recognize the role survivor support programs have on patient

Learn More
Webinar

Amplifying the Voices of Those with Lived Experience: The Key to Transforming Healthcare

PXE Credit Available

Across the world, we are seeing changes and transformation in our health care systems. How do we endeavor to understand the value of the voices of people with lived experience (PWLE) in this transformation? How can we best engage them from boardroom to bedside as part of a system-wide and embedded process? How can amplifying

Learn More
Webinar

Lonely No More: Bedside Visit Programs

PXE Credit Available

Erica Luciano, Program Manager, Volunteer Services, UChicago Medicine Kathleen McIntire, CAVS | Director, Volunteer Services | Kaiser Permanente Los Angeles Being in a hospital can be frightening, painful, and oftentimes overwhelming for patients. But those without family members or friends to visit them may face the extra burden of loneliness. Loneliness has consequences that may

Learn More
Webinar

Patient Stories are Data: Reframing How We Hear and Act on Patient Feedback

While the PX Movement has pushed the needle significantly around the value of “patient voices,” patient stories are not being acted upon to bring about change and improvement.

Learn More
Webinar

Rebuilding a Foundation of Trust: A Conversation with Patients and Care Partners

What is the root cause of the breakdown in trust, what does it mean for a healthcare organization to be trustworthy and how do we move ahead from here in rebuilding patient, family and community trust?

Learn More
Webinar

Reimagine Design Lab: A PFA Co-design Program

Learn strategies for creating a PFA co-design program that enables patients and families to participate as equal partners in innovating health care experiences.

Learn More

Blogs

Blog

Policy & Measurement: The Impact of Patient & Family Involvement

By Rosie Bartel  This is the sixth blog in a series of eight by The Beryl Institute’s Global Patient & Family Advisory Board (GPFAB). The intent of this series is to present our perspective on patients’ and families’ lived experience through each of the strategic lenses of The Beryl Institute’s Experience Framework. The Experience Framework

Learn More
Blog

Honoring David’s Legacy: A Journey for Patient Safety

By Rosie Bartel Over the past several years, I have delivered virtual presentations to audiences at the local, national, and international levels. Each year, I consider traveling to Washington, D.C., for World Patient Safety Day to walk—or in my case, roll—onto the U.S. Capitol lawn and place flags bearing the names of individuals affected by

Learn More
Blog

Navigating Conflict in Physician Communication

By Sofie Morgan, MD MBA FACEP CPXP CPC Conflict is integral to the human experience, even for physicians with a strong commitment to professionalism. From my practices as a patient experience professional and an emergency physician, it is clear that conflict often overlies deeper feelings of being misunderstood or undervalued. Yet, in my professional coaching

Learn More
Blog

Staff and Provider Engagement: The Impact of Connecting with Patients and Families

By Corey Kimpson This is the fifth blog in a series of eight by The Beryl Institute’s Global Patient & Family Advisory Board (GPFAB). The intent of this series is to present our perspective on patients’ and families’ lived experience through each of the strategic lenses of The Beryl Institute’s Experience Framework. The Experience Framework

Learn More
Blog

Transforming Healthcare Together: The Power of Patient and Family Partnerships

In the realm of healthcare, the journey towards excellence is continuous, with the ultimate goal of enhancing the human experience. An important approach that is gaining momentum involves formal and intentional partnerships with patients, families, and care partners. This collaborative strategy is not just a concept but a transformative movement. The Beryl Institute strongly advocates

Learn More
Blog

G2G: Moving from Good to Great; A Focused Approach to Improve Colleague Engagement and Patient Experience

By Ellen Harry Imagine a ‘Picture Perfect Room’ with a place for patient belongings, a chair for the provider, therapy equipment, and more; ‘Triad Rounding’ that includes the bedside nurse, provider, and patient; a warm handoff as patients transition throughout the Medical Center; a ‘Close the Loop’ process ensuring all patients are asked if they

Learn More
Blog

Kindness is Good Medicine: Research in Increasing Kind Behaviors in Healthcare

By Jeannette Maré Like many people who are drawn to human experience work in healthcare, I experienced a tragedy that changed everything about how I understand myself. Just before his third birthday, my son Ben died suddenly and unexpectedly of a croup virus. I am not being hyperbolic when I say that I didn’t think

Learn More

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.

Apply Now

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. 

Learn More

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