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 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.
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
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.
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.
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.
This paper explores the value and impact caregivers have on the broader patient experience efforts in healthcare.
This paper shares insights on patient experience gained in speaking with 18 courageous patients and family members from healthcare practitioners to patient advocates.
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.
The gift of caring for a special needs child.
Glenda Sirota lives in Chicago, is 80 years old and says she is “living her best life” after a series of extreme medical events that placed her in a coma for 28 days.
Jono Broad grew up with a diagnosis of bronchiectasis only to learn well into adulthood that the correct diagnosis was cystic fibrosis.
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
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
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
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.
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 strategies for creating a PFA co-design program that enables patients and families to participate as equal partners in innovating health care experiences.
The guide for providers, care partners, policy makers and researchers is the foundation for this webinar’s panel discussion on what matters most to family members and care partners.
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
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
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
By Deborah Ventz-Migneco Healthcare institutions, recognizing the pivotal role of Patient Family Advisory Committees (PFACs), understand the significance of engaging patients and families as essential partners in reshaping and enhancing operational processes. This blog explores the evolving landscape of PFACs in 2024, emphasizing the need for renewal and revitalization to meet the changing dynamics of
By Chris Taylor In the realm of customer service, a call center serves as the front line. It’s where customers’ concerns are heard, problems are solved, and impressions are formed. In this digital age, where interactions are often faceless, mastering proper phone etiquette is paramount. It can make the difference between a satisfied caller and
By Kelly Foran This is the fourth 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
In this PX Blog, I will address the patient experience from a patient’s perspective, mine! Having been diagnosed with cancer, I got empowered by taking charge of my diagnosis. Now thriving, I am living with purpose and passion. As an educator, published author, and patient advocate, my mission is to help others through their journey
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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