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 NewsletterThis 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.
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.
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.
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.
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
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,
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
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
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.
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.
Hear the lived experience of what it’s like when a family member is going through cancer treatment.
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.
Join us for a panel discussion on enhancing patient experience for patients 65 and older. Experts will explore key population statistics, care challenges, and insights from consumer feedback to better understand patient needs. Learn strategies to improve communication clarity and address What Matters Most at every stage of care. Panelists will share lessons from a
During a hospitalization, medical rounds address the patient’s physical needs but often fall short of addressing emotional and spiritual needs. Compassion rounds is an innovative program that focuses on a patient’s mind, body and spirit. It assists families in finding hope, strength, and peace. The goal is to empower patients and families to learn new
Join Chris Brainard, Associate Vice President at UAB Medicine, and Amber Maraccini, VP of Healthcare Executive Advisory at Medallia, for a fireside chat on UAB’s innovative strategies to build trust in patient care. Explore how provider behaviors—like listening patiently and showing empathy—improve trust, outcomes, and patient experiences. Learn about the Medallia-Arnold P. Gold Foundation Humanism
During this webinar members of the Global Patient and Family Advisory Board (GPFAB) will demonstrate how telling stories instead of creating guidelines for healthcare professionals will improve patient outcomes. The GPFAB has created a unique storytelling guide that will help healthcare professionals understand the principles of sharing patient/care partner lived experience through storytelling and how
Explore how healthcare leaders can design and adapt their rounding processes to cater to different patient and employee generations, combining generational data with a personalized approach that is specific to the individual. The discussion will focus on personalized care, communication preferences, and bridging generational gaps in expectations through a human-centric approach that prioritizes empathy and
Patient experience directly impacts patient wellbeing and care outcomes, as well as the reputation of the hospital. But is the patient experience defined by the medical care alone? A recent deep-dive study on Voice of the Patient Data highlights the fact that 53% of patients’ feedback focuses on the medical care and teams. The study
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
By Jill Koss, Cook Children’s Medical Center At Cook Children’s Medical Center, we are committed to continuous innovation to enhance the patient and family experience. One key area of focus has been our Emergency Department (ED), where we identified an opportunity to improve the experience of waiting—both in the waiting area and after patients are placed
Experience Framework Lens: Infrastructure and Governance Effective experience efforts require both the right structures and processes by which to operate and communicate and the formal guidance in place to ensure sustained strategic focus. The Why: Patients should be involved in healthcare governance because their lived experiences and perspectives help create a more patient-centered system. P/F
By Kathy Saldana, MA, CPXP Imagine you have an interview for a job you really need. In fact, you won’t be able to pay your bills if you don’t get this job. Before entering the interview, you send a note to the interviewer that reads, “I have zero tolerance for disrespect. You will be removed
By Vicki Mascareño Nelson My journey to becoming a Patient Experience Partner at the University of Vermont Medical Center (UVM) has been years in the making. It began in 2018 when I became a Patient/Family Advisor on the UVM Children’s Hospital PFAC. My daughter’s experience of living with chronic illnesses led me to want to
By Amber Washington At Tampa General Hospital, we believe every patient and family has a story worth sharing that hold the power to transform healthcare. That is why we created the Voices of Experience Podcast, an inspiring platform to amplify these voices, foster collaboration, and advance the conversation about patient-centered care. What Is the Voices
By Rosie Bartel The Why: As a focus on experience expands, it requires new ways of thinking and doing and the technologies and tools to ensure efficiencies, expand capacities and extend boundaries of care. P/F Impact: When an organization engages innovative and truly meaningful technology, patients and families experience more efficient care with less stress
Members of The Beryl Institute’s Global Patient and Family Advisory Board wish you happy holidays. As 2024 draws to a close, we asked our members to jot down their hopes for healthcare as we welcome the upcoming new year. Tony Serge: My hope for healthcare is for leadership, providers, and staff to work together with
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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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 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.
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