Medicine and Health Sciences Commons^™

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 …

Identifying Sources Of Patient Dissatisfaction When Seeking Care For A Chronic And Complex Disease, Katharine J. Head, Anna K. Forster, Amanda Harsin, Rebecca J. Bartlett Ellis

Patient Experience Journal

Patients’ evaluations of healthcare often rely on patient satisfaction and encounter-specific approaches. Instead, valuable information can be gained by focusing on patient dissatisfaction with healthcare over time. This study examined patients’ sources of care dissatisfaction when seeking healthcare for a long-term chronic and complex disease (CCD). Participants with a CCD called polycystic kidney disease (N=387) completed an online questionnaire with an open-ended question about dissatisfying experiences. Content analysis was used to analyze responses. The coded data resulted in conceptual codes related to dissatisfaction with information, support, and care management. Analysis revealed the type of healthcare provider is often …

Leveraging Patient Experience Measures As Surrogate Outcomes To Evaluate Health Care Interventions, Layla Parast

Patient Experience Journal

Patient experience quality measure scores are widely accepted as outcomes in health services research. For some patients and in some settings, such as hospice care, they can be the most important outcomes. While these measures are widely used, the potential to use them as surrogate outcomes in a clinical trial sense has gone under-recognized. The purpose of this commentary is to discuss the use of patient experience measures as potential surrogate outcomes in evaluating the effect of a health care intervention.

Experience Framework

This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework ( …

Whose Party Is It Anyway? An Invitation From A Patient Experience Advocate, Geoffrey A. Silvera

Patient Experience Journal

In this commentary, the associate editor of Patient Experience Journal (PXJ) discusses the need to center the human experience in health care by celebrating its essential human, the patient. We have a duty to honor and uphold the dignity of the importance of patient priorities, needs, and preferences, and those of their families. We honor, empower, and celebrate the patient experience at the Patient Experience Journal. We do this not only for the sake of patients, but for our sakes as well, so that we might all delight in patient-centered healthcare systems across the globe.

Experience Framework

This article is …

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 …

Part Of The Team: Effecting Change And Sharing Power In Healthcare Settings, Jessica Stanier, Rachel Purtell, Dave Thomas, William Murray

Patient Experience Journal

In 2019, we, as a group of patients and researchers, were invited to rethink how the executive board received and responded to patient stories at a specific NHS hospital trust in the UK. Through an iterative series of meetings, we were able to co-identify common concerns and together develop a distinctive narrative framework for effecting change by sharing patient experiences. This narrative framework is designed to help patients position themselves as ‘part of their healthcare team,’ emphasising roles and responsibilities between patients and health practitioners to compare ideals with reality in patient experiences. While the project was promising, several factors …

Draws And Windfalls: Comparing Patient Experiences In Inpatient Telehealth And Non-Telehealth Acute Care Units, Geoffrey A. Silvera, Erin Blanchard, Varun Natarajan, Eric Wallace, William Steve Stigler, Bart Kelly, Terri Scarborough, Sue S. Feldman

Patient Experience Journal

The global COVID-19 pandemic has challenged health care delivery in many ways. One solution from the pandemic that offers potential upside is the expansion of telehealth as a means to provide high quality, cost-effective, and safe care while also maintaining excellence in patient and family experience. While most examinations of the use of telehealth over the pandemic have focused on the expansion of outpatient telehealth, few have explored the use of telehealth for hospitalized patients. This article will examine the influence of telehealth use on patient experiences among acute care patients. Inpatient telehealth acute care (ITAC) is a …

Strengthening Patient-Family Engagement Amidst A Pandemic: Lessons Learned And Paths Forward, Kyle J. Rehder, Shannon Haney, Jan Freeman, Aaron West

Patient Experience Journal

The COVID-19 pandemic was highly disruptive to healthcare and negatively affected healthcare worker and patient experience on multiple levels. Patient Family Advisors serve an important role in partnering with health systems to improve patient experience, yet the work of many volunteer programs were interrupted by the onset of the pandemic, at a time when integrating patient voice into care delivery was sorely needed. This case study presents one health system’s experience adapting a system-wide Patient Family Advisory program in the setting of the COVID-19 pandemic, including the transition to a virtual format and increased flexibility in how Patient Family Advisors …

Listening As Medicine: A Thematic Analysis, Rachel Kishton M.D., Heta Patel, Divya Saini, Jeffrey Millstein M.D., Aaron Levy Ph.D.

Patient Experience Journal

Realizations of the importance of “the art of medicine” in trust-building and patient satisfaction have resulted in the incorporation of narrative medicine programs into training curricula. By learning how to respond to patient stories as well as communicate their own, healthcare providers can ensure that their patients feel heard and respected. This study seeks to define what constitutes empathetic listening through a qualitative analysis of personal narratives collected from patients, caregivers, and providers across an urban academic healthcare system. Stories (n=41) underwent thematic analysis to note common experiences related to listening during a health system encounter. Eighteen grounded codes were …

A Concept Analysis Of The Patient Experience, Tanja Avlijas Rn, Mscn, Janet E. Squires Rn, Phd, Michelle Lalonde Rn, Phd, Chantal Backman Rn, Phd

Patient Experience Journal

Patient experience, an essential indicator of quality patient care, is of increasing importance to hospitals that want to improve and maintain strong patient experience metrics to remain competitive in the business of healthcare. The aim of this study was to clarify the concept of the patient experience by identifying its existing definitions, methods of measurement, and underlying themes and attributes, to differentiate it from similar concepts and propose an operational and theoretical definition to guide valid and reliable development of future assessment tools. Walker and Avant’s eight-step methodology served as the framework for this concept analysis. A literature search, using …

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 …

Enhancing Patient-Centered Care For Limited English Proficiency Patients Through Tell Me More®: A Student-Driven Initiative To Explore The Patient As A Person And Develop Students’ Communication Skills, Angela Liu, Alicia W. Leong, Alice Fornari, Taranjeet Kalra Ahuja

Patient Experience Journal

Tell Me More® (TMM) is a medical student-driven initiative to build rapport between patients, students, and the healthcare team through patient interviews and collaboratively created posters. Patients with limited English proficiency (LEP) often experience impaired communication with providers. TMM has the potential to address the loss of patient-centered dialogue in interpreter-mediated communications. In this exploratory pilot study, we aimed to include LEP patients in TMM by using medical interpreter phones (MIPs) at Long Island Jewish Medical Center, Northwell Health. Our objectives were to: (1) evaluate the feasibility of this approach, (2) compare TMM engagement between LEP and English-speaking (ES) patients, …

Developing A Patient Satisfaction Measure For Imaging-Based Patient Information During Clinical Consultations, Hindrik J.J. Pinkster, Anne M.L. Meesters, Frank F.A. Ijpma, Erik Taal, Joep Kraeima, Peter M. Ten Klooster

Patient Experience Journal

Different types of medical imaging are increasingly being used to explain specific aspects of injuries to patients during consultations. However, there are no validated questionnaires available yet that specifically measure patients’ satisfaction with the use of such images. The objective of this study was to develop and evaluate a patient-centred measure of satisfaction with the use of medical imaging modalities in clinical treatment. A preliminary 22-item version of the Questionnaire for Patient Satisfaction with Imaging (QPSI) was developed based on extant literature and interviews with trauma patients. Final item selection and psychometric evaluations were conducted amongst a sample of 106 …

Outpatient Visit Modality And Parallel Patient Satisfaction: A Multi-Site Cohort Analysis Of Telemedicine And In-Person Visits During The Covid-19 Pandemic, Nicole J. Ploog, Jordan Coffey, Laurie Wilshusen, Bart Demaerschalk

Patient Experience Journal

Telemedicine approaches provide many benefits to patients across both primary and specialty care. Patient acceptance is imperative to successful telemedicine implementation. As telemedicine utilization continues to surge, it is imperative that healthcare organizations have a method for evaluating the patient experience with these types of visits. Previous studies on experience with telemedicine have focused on smaller patient populations with narrow inclusion criteria and limited geographical reach. This research described how patients’ satisfaction with video telemedicine-based visits varied based on patient characteristics and how they compare with in-person visits. We obtained and analyzed results from standardized patient experience surveys to compare …

Technology About Me Without Me: An Examination Of The Relationship Between Patient-Facing Technology And Patient Experience, Geoffrey A. Silvera Phd, Mha, Courtney N. Haun Phd, Mph

Patient Experience Journal

To appreciate the role of electronic health records (EHRs) in achieving the goals of patient-centered care, scholars have focused primarily on the influence of EHR capabilities on clinical providers’ behaviors. The objective of this study is to examine the degree to which patient-facing technology (P-Tech) in U.S. hospital EHRs are associated with patient evaluations of their care experience. A cross-sectional OLS regression is executed to examine the relationship between P-Tech and patient experience on a sample of U.S. hospitals (n=1,168) compiled via data from CMS, the American Hospital Association’s (AHA) Annual Survey (2014), and the AHA Health …

The Importance Of Patient Engagement In The Management Of Giant Cell Arteritis, Nikhil S. Patil, Maxwell J. Gelkopf, Santano L. Rodrigues, Arun Ne. Sundaram

Patient Experience Journal

Giant cell arteritis (GCA) is a vascular condition characterized by ocular, systemic and neurological symptoms. Visual loss is the dreaded complication of this condition, prompting expedient diagnosis and treatment. Treatment typically involves prolonged glucocorticoid therapy which is often accompanied by several undesired side effects. In this report, we document one patient’s experience with GCA, its treatment, and relapse. Particularly, the patient highlights the difficulties and successes he had with the disease and its treatment. We also document the physician perspective on this disease and its treatment, specifically discussing the significance of prolonged treatment with glucocorticoids. We comment on the importance …

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 …

Global Child And Family-Centered Care Fellowship, Education And Mentorship For Pediatric Healthcare Professionals: A Literature Review, Ashley Zheng, Bobbijo Pansier

Patient Experience Journal

Child- and family-centered care (FCC) is increasingly accepted and implemented to optimize the healthcare experience for patients, their families, and healthcare professionals. Standish Foundation for Children, a 501(c)(3) non-profit, has designed and piloted a fellowship to educate pediatric healthcare professionals in FCC & psychosocial care via an inquiry and mentorship model in Tbilisis, Georgia. This review aimed to evaluate and synthesize existing literature on psychosocial and FCC mentorship for pediatric healthcare professionals in four parts: ongoing need, effects on healthcare professionals, effects on children and their families and/or caregivers, and in cross-country healthcare settings. Reviewers searched open-source databases for articles …

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. …

Development Of An Experienced Quality Measure For Clients, Informal And Formal Caregivers In Home Care In The Netherlands: A Participatory Action Research, Roy Haex, Theresa Thoma-Lürken Phd, Anna J.H.M. Beurskens Phd, Sandra M.G. Zwakhalen Phd, Rn

Patient Experience Journal

To optimise home care provision and to identify potential improvements in the care process, it is important to gain insight into the care experiences that influence care quality. The aim was to develop a qualitative experienced quality measure for home care in The Netherlands, facilitating conversations between clients and caregivers in generating possible points of improvement for the primary care process. A participatory action research design to develop the measure following three iterative cycles, using various data sources in evaluating requirements related to the goal, feasibility in care setting, and usability in the care process. The final design comprises an …

Patient Reported Experience In A Radiation Oncology Department, Demetra Yannitsos, Petra Grendarova, Abdulla Al-Rashdan, Linda Watson, Wendy Smith, Fiona Lochray, Jackson Wu, Lisa Barbera

Patient Experience Journal

Understanding patient experience is essential to providing high quality, person-centered care. A real-time baseline cross-sectional study was completed to identify gaps in patient experience that can be targeted for quality improvement (QI). This study is part of PROSE (Person-centered Radiation Oncology Service Enhancement), a QI initiative developed to improve patient experience at a tertiary cancer centre Radiation Oncology (RO) Department. Data was collected using the Your Voice Matters (YVM) questionnaire. The YVM captures information on the patient’s last visit, and questions are organized based on dimensions of person-centered care. Recruitment occurred between May and August 2019 in the radiation department. …

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 …

Using A Multidisciplinary Data Approach To Operationalize An Experience Framework, Kevin Spera, Garrett Holmes, Sunni Barnes

Patient Experience Journal

Like many healthcare organizations, Baylor Scott & White Health (BSWH) is awash with data. Often, this data is used in siloed departments to monitor safety and quality, make local business decisions, and motivate staff to improve processes to achieve sustained excellence and market share. As margins get thinner and competition from various disrupters increases, organizations have tried to improve the patient experience to remain viable as part of a calculated strategy. Nevertheless, these entities have struggled to focus limited resources for sustained improvement in patient experience. This article details how a large Texas-based healthcare system "operationalized" The Beryl Institute's Experience …

Motivations, Experiences, And Aspirations In Patient Engagement Of People Living With Metastatic Cancer, Patricia L. Stoop, Leslie Duran

Patient Experience Journal

The objective of this patient-led study was to explore the motivations, experiences, and aspirations of people living with metastatic cancer who volunteer in patient engagement. This qualitative study filled a gap in lived experience research about patient engagement by focusing on an oft ignored population – those living with metastatic cancer. We used a patient-oriented research approach throughout the research cycle from proposal development to data analysis. A Patient Partner helped develop the project proposal. We selected a qualitative descriptive design to best align with our patient-oriented research goals. The first author, a peer researcher with metastatic cancer, conducted semi-structured …

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 …