Public Health Commons^™

Covid-19 Vaccine Perception And Hesitancy Among Uninsured Free Clinic Patients, Samin Panahi, Brenda Spearman, Justine Sundrud, Mason Lunceford, Akiko Kamimura

Patient Experience Journal

There are many complexities regarding the acceptance of COVID-19 vaccines, mainly because the COVID-19 vaccine had a fast track of development compared to vaccines developed in the past years. The purpose of this study is to understand COVID-19 vaccine perception and hesitancy among uninsured free clinic patients using the theory of planned behavior. This study had seven focus groups with 37 total participants, including 19 Spanish speakers. Free clinic adult patients (over the age of 18) participated in four focus groups during Summer of 2021. The average age of the participants was 44.7, and the majority of the participants self-identified …

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. …

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 …

Going From An Academic Medical Center To A Community Hospital: Patient Experiences With Transfers, Alexander Kazberouk, Nicole Boyd, Sandra Oreper, Michael Chang, James D. Harrison, Priya A. Prasad, Ari Hoffman

Patient Experience Journal

Academic medical centers (AMCs) often operate at or near full capacity, which leads to delays in care while smaller community hospitals may have excess capacity. To address this issue and to match patient needs to care acuity, patients may be transferred from an AMC emergency department for direct admission to a community hospital. We aimed to explore the experiences and perspectives of patients who were transferred. We randomly selected patients transferred between February 2019 and February 2020. We conducted structured thirty-minute interviews containing fixed response and open-ended questions focusing on the transfer rationale and experience, care quality, and patient financial …

Living With Multiple Sclerosis As A Former Marathon Runner: Impact Of Attitude And Past Behaviour On Self-Care Maintenance And Perseverance, Michael Stephanou

Patient Experience Journal

As healthcare professionals, we have a duty to promote the wellbeing of individuals living with chronic diseases and this could be accomplished through the establishment of self-care strategies that are both collaborative and self-directed. Insight into the complex behaviours and backgrounds of individuals who show initiative in dealing with chronic disease could help achieve this by revealing drivers of health-seeking and engaging behaviours. Therefore, by deducing the complex interactions between attitude, past experiences and disease outlook, broader patient welfare could be championed through the implementation of targeted interventions which promote self-care in chronic disease. This article aims to explore these …

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 …

Consumer Representative Experiences Of Partnership With Health Workers In Australia, Coralie R. Wales, Judith A. Lababedi, Alison Coles, Philip Lee, Emma Clarke

Patient Experience Journal

We examine the experiences of Consumer Representatives participating in consumer engagement activities across a public health service in NSW, Australia. A team of Consumer Representatives and staff members use a participatory, constructivist paradigm and a hermeneutic phenomenological approach to analyse ten interviews with Consumer Representatives over three years 2017-2019, and three focus groups in 2020. We explore these experiences and identify the linked contextual factors from their points of view. Consumer Representatives were prepared to invest their time, but they needed respect. “Respect” from a consumer perspective was being meaningfully included, supported and heard, and activities needed to be purposeful …

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 …

Building Patient Participation In Quality Of Care Through The Healthcare Stories Project: A Demonstration Program In New York State Hiv Clinics, Abigail Baim-Lance, Freda Coren, Margaret Brown, Hazel Lever, Daniel Tietz, Bruce Agins

Patient Experience Journal

There is growing recognition that patients should play a central role in defining, assessing, and improving the quality of healthcare, thereby enhancing patient experiences. Healthcare organizations struggle to meet these goals, which require becoming more patient-centered and patient-involved. The Healthcare Stories Project (HCSP), a demonstration program of the NYS Department of Health AIDS Institute, aimed to address this. HCSP comprises three, stepwise activities to: 1) Capture how patients define and experience ‘quality of care’ in the clinic; 2) Engage patients and providers as equal partners in understanding and improving the quality of care; and through partnerships, 3) Support the building …

The Right Premtm: Rasch Analysis Of A New Patient Reported Experience Measure For Use By Older People In Hospital, Louise Heuzenroeder, Jyoti Khadka, Alison Kitson

Patient Experience Journal

Healthcare rights exist to protect older people from harm and to empower older people to participate in their care with independence, choice and control. Multiple investigations revealing abuse provide evidence that older people’s rights are being breached. Older people must have the opportunity to report on their experience of care against their rights. The Right PREM^TM is a new instrument designed to measure older people’s experience of care against their healthcare rights. The objective of this cross-sectional validation study was to assess the psychometric properties of a new instrument to measure the experience of care consistent with the healthcare …

Measuring Cancer Care Experiences Of Aboriginal And Torres Strait Islander People In Australia: Trial Of A New Approach That Privileges Patient Voices, Monica Green, Joan Cunningham, Kate Anderson, Kalinda Griffiths, Gail Garvey

Patient Experience Journal

This study examined a new method for measuring the care experiences of Aboriginal and Torres Strait Islander people with cancer: the Indigenous People’s Experiences of Cancer Care Survey (IPECCS). The study assessed IPECCS’s: 1) performance; 2) ability to elicit information useful for service improvements; and 3) implementation potential. Three participant groups were recruited from five Australian cancer treatment sites: 1) Aboriginal and Torres Strait Islander people with cancer (+/- support person); 2) interviewers; and 3) health services staff. Trained interviewers administered IPECCS to participants with cancer in audiotaped sessions. Paper forms and transcripts were compared to assess performance, and problems/potential …

An Evidence-Based Tool (Pe For Ps) For Healthcare Managers To Assess Patient Engagement For Patient Safety In Healthcare Organizations, Ursulla Aho-Glele, Marie-Pascale Pomey, Maiana Regina Gomes De Sousa, Khayreddine Bouabida

Patient Experience Journal

In 1999, the Institute of Medicine had already warned that medical errors caused between 44,000 and 98,000 avoidable deaths per year in the United States. A similar situation was subsequently in 2000, documented in Canadian hospitals. According to a Canadian Patient Safety Institute report (2016), incidents in both acute and home care settings resulted in additional costs of $2.75 billion each year. Research suggests that Patient Engagement (PE) for Patient Safety (PS) can help address this issue. However, the use of PE in various strategies to promote PS has yet to be fully integrated across healthcare systems in OECD countries. …

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 …

A Systems Thinking Framework To Improve Care Of The Terminally Ill: An Australian Case Study, Elizabeth Summerfield

Patient Experience Journal

This paper argues the value of systems thinking to patients, family members and medical practitioners in end-of-life care, particularly as a mechanism for considering when palliative care should be introduced as preferred treatment. It applies a well-established set of tenets in systems thinking retrospectively to a case study of patient care in Australia. This highlights how and where different decisions might have been made, based on a holistic consideration of the patient’s best interests. The case is written from the perspective of a family caregiver. It argues that early, deliberate conversation, framed by systems thinking tenets, can support the call …

Perceptions Of Care & Patient-Provider Communication By Varying Identity Groups In A Collegiate Health Clinic, Yewande O. Addie, Tatiana Maser, Cecilia Luna, Casey Rayfield, Kelli R. Agrawal

Patient Experience Journal

LGBTQ patients experience discrimination and poor access to quality health care, but there is little inquiry on the experiences of LGBTQ patients in student health clinic. The purpose of this study was to examine the quality of patient-provider communication (PPC) among sexual and gender minority patients, especially those who have intersecting minority identities, in a student healthcare setting. An online survey measured PPC using the Communication Assessment Tool (CAT) and contextual questions regarding identity and perceptions of judgment. Analysis tested intersectional variance in both. A convenience and snowball sample of 102 respondents, 18+, that utilized health services at a public …

Patients’ Experience In Hong Kong Hospitals: A Comparison Between South Asian And Chinese People, Nimisha Vandan, Janet Yuen-Ha Wong Dr., Paul Siu-Fai Yip Chair Professor, Daniel Yee-Tak Fong Dr.

Patient Experience Journal

Patient experience in hospital is positively associated with both self-rated and objectively measured health outcomes. In many countries ethnic minority patients have more negative experience and bear a disproportionate burden of disease than their majority counterparts. However, hospital experience of ethnic minority patients in Asia is still unexplored. We aimed to explore the hospital experience of South Asian ethnic minority and compare that with local Chinese patients’ experience in Hong Kong. A cross-sectional study sample comprised of 783 participants (388 South Asian and 395 Chinese). Picker Patient Experience-15 (PPE-15) questionnaire was used for data collection. Simple and multiple regressions were …

Exploring Peer Mentoring In Pediatric Transition: Perspectives Of Different Stakeholders About Accompanying Patients In Gastroenterology, Guillaume Dumais-Lévesque, Marie-Pascale Pomey

Patient Experience Journal

The literature identifies several issues in the pediatric transition, such as the lack of coordination between pediatric and adult settings and young patients who are not exercising independence in the self-management of their disease. The objective of this study is to explore the potential for a pediatric transition program in gastroenterology, introducing an accompanying patient program to support the transition. A qualitative case study was conducted, including semi-structured focus groups and individual interviews with each group involved in the pediatric transition between two centres in Quebec. A thematic analysis of the collected data was performed using QDA Miner v5.1. In …

Collecting Child-Patient Feedback: A Systematic Review On The Patient-Reported Outcome Measures For Hospitalized Children, Haneen Ali, Astin Cole, Adam Sienkiewicz, Steffie Rosene, Reagan Shaffer, Robert Thames

Patient Experience Journal

Accurate reporting of patient experiences is a crucial resource for hospitals engaged in patient-and-family-centered care (PFCC). However, studies suggest that most children do not respond to patient satisfaction surveys and are instead represented by their parents or guardians. This study reviewed instruments used to obtain feedback from children about their healthcare experiences for two purposes: 1) To understand the limitations of current tools and 2) To determine if creating a new instrument is necessary. A systematic review was performed on PubMed, Medline, CINAHL, and Web of Science to identify peer-reviewed questionnaires designed to collect children's healthcare experiences. Out of the …

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 …

Cards From The Community: Engagement Of The Local Community To Enhance Patient And Staff Experience During The Covid-19 Pandemic, Brittany Branson

Patient Experience Journal

During the COVID-19 pandemic, in accordance with recommendations from the Centers for Disease Control and Prevention (CDC.gov), strict visitation restrictions were implemented across the six hospital Yale New Haven Health System (YNHHS) in an effort to protect patients, visitors and staff. In addition, to the extent that it is possible, YNHHS staff have been encouraged to work remotely. While these measures achieve the goal of reducing the number of people within the hospitals and enable successful social distancing, they also may contribute to social isolation for both patients and staff. A program called “Cards from the Community” was developed to …

My Six-Word Story: Power To Reconnect And Connect, Alexie Puran

Patient Experience Journal

The COVID-19 global pandemic is a threat to the well-being of our healthcare professionals. Recent studies on the mental health effects of healthcare professionals from China and Italy have revealed higher levels of depression, anxiety and psychological distress. As a Pediatric Emergency Medicine physician working on the frontline and a H3 (Helping Healers Heal) Peer Champion, I sought to support my staff’s well-being and emotional resilience. My Six-Word Story, a simple and meaningful activity was designed to support the psycho-social well-being of those on the frontline providing care. This new project was implemented in the Pediatric Emergency Department at NYC …

Nursing Leadership During Covid-19: Enhancing Patient, Family And Workforce Experience, Anne Aquilia, Karen Grimley, Barbara Jacobs, Maryellen Kosturko, Jerry Mansfield, Charlotte Mathers, Peggie Parniawski, Laura Wood, Victoria Niederhauser

Patient Experience Journal

The global COVID-19 pandemic has challenged nurse leaders in ways that one could not imagine six months ago. Along with ongoing priorities of providing high quality, cost-effective and safe care, nurse leaders are also committed to creating environments that support excellence in patient and family experience. This article will provide exemplars of how nurse leaders used decisive decision-making, adapted to novel situations and issues, ensured reliable and safe delivery of care and engaged patients, families and their workforce to create excellent experiences of care during the pandemic. Throughout this crisis, nurse leaders have learned how to grapple with quick and …

Caring For Our Caregivers In Body, Mind And Spirit During The Covid-19 Pandemic, Rick Evans, Philip J. Wilner, Kristen Spillane

Patient Experience Journal

New York City became the epicenter of the coronavirus pandemic in March 2020. The surge of critically ill patients combined with widespread social distancing measures created extraordinary challenges for healthcare workers. Many frontline workers experienced significant physical, psychological, and emotional distress. They faced demanding patient care responsibilities while managing personal obligations and health concerns.

During the COVID-19 pandemic, it was imperative that NewYork-Presbyterian care for its workforce’s physical, psychological and emotional needs, not only because of our commitment to our colleagues as people, but also because of our obligation to continue to deliver high quality care and experience to the …

Leveraging The Agility Of The Care Experience Dyad Partnership Model During Covid-19, Vanessa Mona, Rana Awdish Md Fccp

Patient Experience Journal

The extraordinary nature of COVID-19 has presented, and will likely continue to present, unique challenges for care delivery systems; not only in respect to delivery of care to patients, but also in respect to the ways in which health systems care for, and facilitate safe working environments for their employees. It was identified early on that COVID-19 would challenge our Health System, Henry Ford, in its ability to provide an optimal experience of care for our patients. We realized that the feelings of isolation experienced by patients, anxieties experienced by their families and impacts to the well-being of our employees …

Family Connect: Keeping Families Informed During The Covid-19 Pandemic, Brittany Branson, Anne K. Wilkinson, Jaya Sondhi, Irma Dadic, Devin M. Giguere, Rachel Ramsey, Regina Grinblat, Katherine A. Hochman

Patient Experience Journal

Family Connect programs to enhance communication with families and care partners who were unable to visit their inpatient loved ones during the COVID-19 crisis. While they differed in composition, the Family Connect programs at both institutions leveraged providers who had decreased clinical activity during the pandemic. The Family Connect team became integrated with the team. At both institutions, Family Connect teams perform virtual chart review, discuss patient status and care plan with the primary provider and communicate with the patient’s designated family member or care partner daily. Conversations are documented in the electronic medical record (EMR), which allows for metric …

Maintaining A Positive Patient Experience During Covid-19 In A Rehabilitation And Complex Care Setting, Sarah Benn Orava, Kim Cook, Amanda Brown

Patient Experience Journal

West Park Healthcare Centre located in Toronto, Ontario, Canada provides specialized rehabilitative and complex care after a life‐altering illness or injury such as lung disease, amputation, stroke and traumatic musculoskeletal injuries. This narrative showcases the strategies, processes and the lessons learned and subsequently utilized throughout the COVID-19 pandemic to engage patients and their family and peers.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)

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

Teleboard: The Move To A Virtual Family Advisory Board, Sheryl Chadwick, Deejo Miller, Kathryn Taff, Amanda Montalbano

Patient Experience Journal

Restrictions on in-person meetings were going to hamper the ability for the well-established Family Advisory Board (FAB) for our pediatric hospital to continue meeting unless a virtual meeting platform was introduced. The FAB was moved to a virtual platform for the April and May 2020 meetings. Attendance rates from family members and staff were measured and compared to the previous 14 in-person meetings. Contributions during the virtual meetings from each attendee type were recorded to analyze engagement during virtual meetings. There was no statistical difference in average attendance for virtual compared to in-person meetings, 75% versus 64.3% for family members …