Medicine and Health Sciences Commons^™

“Not Your Father’S Heart”: How Healthcare Discrimination For Neurodivergent Patients Taught Me About The Human Experience, Cate Murphy

Patient Experience Journal

It is easy to assume all patients who come into a hospital for acute crisis care have a clear understanding of how their experience will be facilitated. When a patient is neurodivergent, they cannot always agree to needed intervention. This is exacerbated by the “poor timing” of questions portrayed to impact the critical care received, sometimes irreparably. This is my story of watching my young, active partner suffer two massive heart attacks and refuse intervention because he was ashamed to admit he had not seen a doctor in over thirty years. Due to his neurodivergence, he could not process questions …

Investing In The Bottom Line: The Value Case For Improving Human Experience In Healthcare, Jason A. Wolf, Vishal Bhalla, Brian Carlson, Jennifer Carron, Lanie Dixon, Julie K. Oehlert, Brant J. Oliver

Patient Experience Journal

Investment in human experience is imperative for healthcare organizations. It is a strategic focus that can lead to great benefits. Those that overlook experience, seeing it as “simply” about satisfaction or survey data, do so at great cost to their organization, team members, and most importantly those we serve – patients. A commitment to human experience – integrating the patient, workforce, and community experience – is essential for all healthcare organizations in realizing the goals they strive for and the impact they aspire to achieve. It leads to high-quality outcomes for those they care for. It creates a positive environment …

The Evolution Of Patient Experience: From Holistic Care To Human Experience, Corey Adams, Reema Harrison, Jason A. Wolf

Patient Experience Journal

Patient experience has evolved as a critical concept and outcome in health systems internationally. Evolving from consumer-led movements, coupled with shifts in the positioning of patients among clinical professions, the global focus on patient experience is now evident in nationally mandated measurement tools, the creation of dedicated institutional leadership roles, and outlets such as the Patient Experience Journal. By critically analysing the pivotal factors and milestones that have shaped its evolution throughout healthcare history, this review provides an in-depth exploration of the evolution of patient experience. In doing so, the review provides a critical analysis of the application of patient …

Looking Back To Move Forward: The Next Decade And Beyond For Human Experience, Jason A. Wolf

Patient Experience Journal

This issue comes out at an important moment for the experience conversation. It was ten years ago from the publication date of this issue on April 30, 2014, that the first issue of Patient Experience Journal (PXJ) was released. PXJ was intended to be a gathering place. A virtual town square for the experience movement where people could and would come together to share ideas and proven practice. This value of collaboration is at the foundation of our very efforts as a global community through The Beryl Institute. Experience is not some secret competitive ingredient in the world of healthcare. …

Breaking The Transactional Mindset: A New Path For Healthcare Leadership Built On A Commitment To Human Experience, Kirsten Krull, Jerry Mansfield, Jennifer Gentry, Karen Grimley, Barbara Jacobs, Jason Wolf

Patient Experience Journal

Numerous health care publications have focused on the compelling need to improve patient experience and the associated improvements necessary to address workforce well-being. The COVID-19 pandemic exacerbated and illuminated long-standing problems in health care including workforce shortages, inequity in health care delivery outcomes, care provider burnout, and overall societal structural racism.^1,2 The Beryl Institute’s Nursing Executive Council (NEC) manuscript Rebuilding a Foundation of Trust: A Call to Action in Creating a Safe Environment for Everyone³ focused on actions and behaviours to heal relationships and build trust between care providers and leaders with commitments to safety, empathy, shared decision …

Four Commitments For The Future Of Healthcare: Reflecting On A Decade Of Patient Experience Journal, Jason A. Wolf

Patient Experience Journal

This issue closes the first decade of Patient Experience Journal’s (PXJ) contribution to evidence and innovation, to sharing stories and research, to elevating the conversation and pushing the boundaries of the experience movement. We have never hesitated to nudge at the status quo or to respond with agility to the challenging moments we have faced. We have welcomed diverse voices as contributors, and we have seen an even more diverse readership. In reviewing the pages of PXJ over the last decade, we see a true evolution of the experience movement itself. The words of our contributors have provided a lens …

Special Issue 2024: Transforming Experience In Non-Hospital Settings, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal(PXJ) is excited to announce the call for submissions for its July/August 2024 special issue focused on exploring how healthcare organizations are transforming experience in non-hospital settings. So much of the experience conversation has been focused on and driven by the hospital setting – from acute care, to pediatrics, safety net hospitals and more. While this focus remains essential to some of the most critical care delivered in the healthcare ecosystem, it is important to recognize the volume of care being provided in new and existing settings. This special issue seeks to uncover and elevate the practices …

The Frontier For Human Experience Is Closer Than We Think, Jason A. Wolf

Patient Experience Journal

When we think of frontiers, we think of boundaries between the known and unknown, the edge we see in the distance, something that is always just over the horizon. Yet when we step into what was once the frontier, the horizon moves on us, with new distances to cross, edges to reach. It is this dynamic of frontiers, wrapped in our individual and shared experiences of the last few years that shape this very special issue. It is also why now more than ever frontiers are an important part of our transformation. Frontiers that push us beyond where we can …

Building On A Decade Of Hope: Why We Must Champion The Human Experience, Jason A. Wolf

Patient Experience Journal

The pages of PXJ have served a primary purpose, to expand the evidence on patient experience and push the boundaries of innovation in this critical work. But through this commitment, PXJ has seen much more happen. The contributions of our thousands of authors, reviewers and editors have also fostered an environment of connection. PXJ has emerged as something more than just a journal. It has become a place for conversation. It has served as a conduit for expanding excellence in practice. It has fostered new thinking. And it has broadened our global community. There is something very special found on …

Cancer Experience Of Care Improvement Collaboratives In The National Health Service In England, Claire Marshall, Helen Bulbeck, Ruth Hudson, Bruce Johnston, Shareen Juwle, David Mcnally, Bella Talwar, Lisa Young, Ella Woodward

Patient Experience Journal

NHS England started the work described in this article with the ambition of using insight and feedback from the adult National Cancer Patient Experience Survey to grow coproduced service improvements leading to improved patient centred quality outcomes in experience for cancer patients. Based on the Institute for Healthcare Improvement’s Breakthrough Collaborative Series, the approach of the Cancer Experience of Care Improvement Collaboratives (CIC) in the English healthcare system was developed, initially with 19 NHS provider organisation teams in 2019 as a face-to-face model, then developing into two collaboratives with an additional 15 NHS provider organisation teams in Cohort 2 and …

Navigating The “Perfect Storm”: Leading With A Commitment To Human Experience, Jason A. Wolf Phd

Patient Experience Journal

As was known even prior to the pressures placed on us by the pandemic, what lied just beneath the surface of our work in healthcare was clear. A healthcare workforce feeling overworked and overwhelmed. Communities seeing and feeling the impact of inequities and disparities in care. Patients and care partners working diligently to elevate what matters to them. A tearing at the social fabric that has led to incivility and even mortal violence. And healthcare systems laboring to maintain financial viability in the face of global economic uncertainties. We knew the opportunities then, and we cannot escape them now. This …

Special Issue – July/August 2023: Emerging Frontiers In Human Experience, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July/August 2023 special issue focused on exploring the emerging frontiers of human experience in healthcare. As shared in the recent PXJ article, Reexamining “Defining Patient Experience”: The human experience in healthcare: "The rapid evolution in the recognition of the humanity in healthcare has required us to view the human healthcare experience not just as a person-centered process or relationship-based encounter. It is an intricate tapestry of human interaction both in the clinical and non-clinical settings across the continuum of care and into the communities served …

Tranquility Rooms For Team Member Well-Being: Implementation During Covid-19 Pandemic, Julie A. Kennedy Oehlert, Christina M. Bowen, Holly Wei, Wendy Leutgens

Patient Experience Journal

In 2020, the COVID-19 global pandemic changed the landscape of healthcare delivery and with it the need to better address team member well-being. Aside from patients and their families, healthcare professionals were among the most affected and at high risk for suffering psychological distress, including increased stress, depression, anxiety, substance use, and post-traumatic stress disorder. Prior to COVID-19, healthcare workers were already experiencing a high rate of job burnout, depression, and suicide. The pandemic brought in sharp focus the essential and urgent need for healthcare facilities to acknowledge the importance of team member well-being and the provision of spaces such …

Understanding Modern Drivers Of The Employee Experience In Healthcare, Antonio Pangallo, Tim Atwell, Kristi Roe, Adrienne Boissy

Patient Experience Journal

Employee engagement has been considered the guiding metric to convey the health, loyalty, and performance of the healthcare workforce. However, the pandemic created new challenges and stimulated deeper conversations around remote work, systemic racism, inclusivity, trust, well-being, and mental illness, which calls into question whether engagement alone is enough. Using an employee experience model deployed in other industries, we identified key drivers of six employee experience (EX) outcomes. We conducted a panel study with close to 5,000 nurses and physicians to identify and prioritize current key drivers specific to the healthcare employee experience. Relative weights analyses suggest that being treated …

Human Experience Is Not A Line Item, Jason A. Wolf

Patient Experience Journal

Our humanity is fundamentally defined in context with others, in our relationships that reinforce or bend who we are, in the interactions through which we wither or grow. It is these interactions that rest squarely at the heart of the healthcare experience. For over a decade, we have defined experience in The Beryl Institute community as the sum of all interactions, shaped by an organization’s culture that influence patient perceptions across the continuum of care. The power of the simple, yet significant nature of these words reinforces the idea that experience happens primarily at the touch point between people. …

Measuring What Matters: A Proposal For Reframing How We Evaluate And Improve Experience In Healthcare, Alpa Vyas, Lisa Allen, Anne Brown, Jennifer Carron, Cassandra Crowe-Jackson, Rick Evans, Kevin Gwin, Jason A. Wolf

Patient Experience Journal

The conversation on measuring experience has been a long and thoughtful one. It has reflected a dynamic tension between measures used as a lever for action in some health systems and as a mechanism to determine reimbursable dollars in others. Yet underlying all the conversation, the question of what we measure, to what end we measure and what truly matters to those who experience care remains. Through a series of conversations over the last two years senior experience leaders across healthcare organizations determined it is time to assess the current landscape of patient experience measurement, to acknowledge what the existing …

Community: The True Driver Of Excellence In Human Experience, Jason A. Wolf

Patient Experience Journal

The idea that we are a community first, a community of people from a breadth of backgrounds and experiences, from all corners of our world, has been the foundation on which our work has been built, our efforts motivated, our research driven and our hope inspired. It is a tapestry of possibility, grounded in evidence and brought to life in practice that has made the journey to our 9^th volume so enriching. A community is fostered in realizations of people who want to be part of something together – an idea, a hope, a purpose or possibility – and …

Focus On Optimal Health, Not Ideal Health, John M. Roll

Patient Experience Journal

Providers strive to help patients live the best, healthiest life they are capable of living. However, those efforts should involve a careful assessment of what the patient’s optimal health status is. It is deleterious to the therapeutic relationship to drive a patient towards a health status they are not able to attain. This article provides a brief commentary on the author’s experience as a patient to illustrate this point.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).

• Access other PXJ articles related to this lens. …

The “Wreckage” Left By The Covid-19 Passage: Thoughts Of A Palliative Care Nurse, Angela Simões

Patient Experience Journal

Today, according to Johns Hopkins University, the overall number of global COVID-19 cases has exceeded 244 million with more than four million deaths. Humankind is currently facing an unprecedented global crisis. The impact of this crisis on the healthcare system is potentially far greater than we imagine. This narrative presents a series of stories lived by a palliative care nurse in COVID's time to show how the pandemic itself is a form of inequity and health disparities on the human experience. In my previous narrative, written in April 2020 and published in the Patient Experience Journal Vol. 7, Issue 2, …

Rebuilding A Foundation Of Trust: A Call To Action In Creating A Safe Environment For Everyone, Cynda H. Rushton, Laura J. Wood, Karen Grimley, Jerry Mansfield, Barbara Jacobs, Jason A. Wolf

Patient Experience Journal

Well before the COVID-19 pandemic, incivility and physical threats directed toward healthcare employees and often registered nurses was a growing concern by Chief Nurse Executive (CNE) leaders. In 2019, conversations initiated by The Beryl Institute’s Nurse Executive Council (NEC) to consider how best to achieve a much-needed balance between patient/family and staff safety have now become a critical priority to ensure the safety of everyone receiving and providing health care services. The heart of this work was organized around a set of newly developed ethical precepts designed to guide the exploration of key concepts. A call to action grounded in …

In Divided Times, A Focus On Human Experience Connects Us, Jason A. Wolf

Patient Experience Journal

The realities of the time in which we find ourselves, not only in healthcare, but in society overall, have exposed so much of what was simmering beneath the surface of our humanity. Issues of equity and inclusion, of stress and burnout, of division and misconception and even the existence of alternative “truths” have caused rifts in our connection, weakened our societal foundations and pulled on the seams of the healthcare system itself. We close our eighth volume of Patient Experience Journal (PXJ) under this veil, yet I believe we have an opportunity to use this moment as a place from …

Special Issue – July/August 2022: Elevating The Human Experience Through Caring For The Healthcare Workforce, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July/August 2022 special issue on the impact that caring for the healthcare workforce can have on transforming the human experience. Well before the pandemic and elevated by it, the importance of the healthcare workforce in ensuing the best in experience has been essential. It is why at the heart of the definition of patient experience itself, that culture is identified as an essential element. More so, the Declaration for Human Experience (https://transformhx.org/) reinforced this through a foundational commitment to “understand and act on the …

Breaking Barriers To Equity: A Conversation With Dr. Julia Iyasere, Jason A. Wolf Phd

Patient Experience Journal

I was honored to have the opportunity to talk to someone I've been fortunate to meet in the past few months and who has taught me incredible things about the topic of equity in healthcare and even more so the idea of health justice, Dr. Julia Iyasere, Executive Director of the NewYork-Presbyterian Dalio Center for Health Justice. As a physician, an educator, a researcher, and I suggest an evidence-based social activist, Dr. Iyasere has led the establishment and growth of the Dalio Center in just the over 9 months since its launch. But the ideas she champions in her work …

Moving From Talk To Action: A Commitment To Ensuring Equity Must Ground Our Efforts To Transform The Human Experience, Jason A. Wolf Phd

Patient Experience Journal

When we first introduced the call for submissions for this special issue last August, we were still churning in the first wave of the COVID pandemic. Just three to four months from the start of an unending rash of unexpected and harsh realities that we were faced with in healthcare and in society at large, we too found that the moment was revealing all the weaknesses and wounds that had existed in the foundations of the healthcare system from well before the pandemic hit. Our own research at The Beryl Institute in 2020 reinforced a quiet reality: that people do …

Reexamining “Defining Patient Experience”: The Human Experience In Healthcare, Jason A. Wolf, Victoria Niederhauser, Dianne Marshburn, Sherri L. Lavela

Patient Experience Journal

In 2014, the authors came together with the explicit purpose of understanding how people were defining patient experience.¹ Our broad review and analysis of the literature led us to a few critical points. One, as our review showed, there was an absence of a commonly used definition around patient experience in healthcare. Two, while consistency in the use of one definition was not revealed, there was great alignment around central components seen as critical to patient experience. Three, we highlighted the recurrence of key concepts from the literature that are also found in the definition offered by The Beryl …

No Visitors Allowed: How Health Systems Can Better Engage Patients’ Families During A Pandemic, Jennifer Schlimgen, Amy Frye

Patient Experience Journal

The ravages of COVID -19 and the no visitor policies that accompany it have forged a tectonic shift in the patient and family experience. This hit home for me with a recent family member health event and hospitalization, leading me to think “we HAVE to do better!” Why should hospitals and health systems care about family involvement during COVID-19?

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).

• Access other PXJ articles related to this lens.
• Access other resources related to this lens.

A Call To Action For Human Experience, Jason A. Wolf

Patient Experience Journal

As we open the 8th volume of Patient Experience Journal (PXJ), we all stand in a world much different than we did just a year ago. A year ago we were in the height of crisis, facing unknowns and uncertainty. We didn’t know if we were tackling an issue that was weeks, months or years in front of us. We were truly not even sure what tomorrow might bring. As I shared in opening Volume 7, we were already experiencing something special in the midst of real tragedy. We were seeing light peeking through heavy clouds. I opened that issue …

A Student's Lesson In Healthcare Disparities, Daniel Oluwatimilehin Macaulay, Christine Khandelwal, Leah Rosen

Patient Experience Journal

This narrative was born out of a desire to examine the effects of healthcare disparities among minority populations. As a medical student, I had the opportunity to spend a 4-week rotation working with physicians specializing in palliative care during what is arguably the most challenging public health crisis in over a century. This provided a unique perspective that allowed the observation of the intersection of healthcare systems with underserved and vulnerable minority populations, and palliative medicine. It also allowed us to observe the negative consequences it has had, particularly during a hard-hitting global pandemic. The paper gives a brief introduction …

Moving Forward To The Future Of Healthcare, Jason A. Wolf

Patient Experience Journal

To say this moment in our shared global history feels shaky or uncertain for so many is not a statement of despair. Rather, it is acknowledging a reality through which we can best act and hopefully step through. As of the time this editorial will publish, well over 50 million cases of COVID-19 will have been reported. This is a reality all of humanity is sharing together; it is a challenge that healthcare is being called on to tackle. The work of people around the world to care for the sick, to find the right treatments and vaccines and the …

Special Issue – July 2021 The Impact Of Inequity & Health Disparities On The Human Experience, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July 2021 special issue on the impact of racial inequality, health disparities, and discrimination on the human experience. The world now finds itself in the grips of a global pandemic that is taking its toll on communities socially and economically, placing strain on healthcare workers and revealing the very systemic weaknesses and inherent biases that have been resting just beneath the surface of our society for years. The challenge of disparity and inequity is not unique to healthcare, but in the era of COVID-19, what many …