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
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.
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.
Rosie Bartel is a powerful voice for patients and families. After an infection changed her life forever, she chose to share her story and help organizations working to improve patient experience across the US.
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
Explore how to use what patients tell us as actionable and valuable feedback to shift culture and processes.
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.
Hear lessons learned, available caregiver resources, as well as resource strategies that have been implemented to help support caregivers beyond the project and through the COVID pandemic.
Explore the power of the PFA and how co-design is crucial for the future of healthcare.
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
Is your Patient and Family Advisory Council (PFAC) unsure how to regroup after COVID? Worse yet, has your organization lost its PFAC completely? If so, this is a perfect time to look at the role of a Patient and Family Advisor (PFA) in new ways. As you begin to rebuild or reboot your PFAC, there
This is the third 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 for each of the strategic lenses of The Beryl Institute’s Experience Framework. The Experience Framework is a community-developed
Delivering Veteran-centered advocacy services to honor, advance, and influence the provision of healthcare to America’s Veteran is the mission of the Veteran Health Administration’s (VHA) Office of Patient Advocacy (OPA). Three key strategic drivers set by OPA in carrying out this mission are: PEOPLE: Increase the trust of our Veterans by providing world-class customer service
Waiting in a healthcare setting, specifically an Emergency Department (ED), is arguably one of the most uncomfortable places to wait. The patient is in distress, physically and mentally. According to real-time survey results from patients discharged from the ED, length of wait time and lack of communications top the list of main concerns. In 2018-19,
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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