Social and Behavioral Sciences Commons^™

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 …

Comparing Patient Experience Survey Scores Between Telehealth And In-Person Ambulatory Pediatric Subspecialty Visits, Sean T. Bomher, Matthew Wood, Elizabeth Uhlhorn, Sandro Marques, Lee Kwiatkowski, Natasa Tekic, Cameron D'Alpe, Natalie M. Pageler, Lane F. Donnelly

Patient Experience Journal

To determine the effect of encounter methods on patient experience, we evaluated patient experience survey data comparing scores between telehealth and in-person visits and pre-COVID-19 and COVID-19 time periods. Pediatric subspecialty visits were either in-person or via telehealth and received the same 16-question patient experience survey. Top box (5/5) scores were compared between in-person and telehealth visits for pre-COVID-19 and COVID-19 periods as well as between periods for in-person and telehealth visits. In addition, for both time periods and encounter methods, correlation analysis was performed to evaluate best correlation between likelihood to recommend practice and the 15 other survey questions. …

Perceptions Of The Healthcare System Among Stakeholders, Michael D. Markee, Christine Ascencio, Laura Brugger, Renee Jonas, Hisako Matsuo

Patient Experience Journal

The U.S. healthcare system is rife with complexities and is consistently a source of political debate. One’s interaction with the system may directly impact the understanding of the system. The objective of this research is to examine the perceptions of the United States healthcare system from the viewpoint of healthcare providers, insurers, and consumers. Using a grounded theory approach, theoretical sampling was used to explore similarities and differences between the three groups of actors in the healthcare system. Data were collected through interviews with thirty-one participants using a semi-structured interview schedule. Themes of cost, access, and inefficiency emerged from the …

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 …

Health Equity And Quantifying The Patient Experience: A Case Study, Maria R. Moreno, Brandon Sherrets, Danielle J. Roberts, Kristen Azar

Patient Experience Journal

The COVID-19 pandemic has invigorated efforts to address health inequities disproportionately burdened by racial/ethnic groups and individuals of low socioeconomic status. Measuring and monitoring patient experience is crucial to understanding why the gaps exist and identifying mechanisms necessary to close them. Electronic health records and digital health tools hold much promise in this regard and can lead to change. We present a case study describing the innovative efforts undertaken at Sutter Health, a large integrated health network in Northern California, to quantify gaps in health equity using electronic platforms and visualization modalities. More work is needed to identify and address …

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 …

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 …

His Story: “I Would Be Better Off Dead”, Ronald Wyatt Md

Patient Experience Journal

A physician shares the story of his brother’s experience in an ICU, how the hospital caring for him failed him as a human being, and how the pain of not being properly cared for and not being treated with dignity and respect left the patient feeling he would be better off dead. In the back of his mind the patient wondered if it was because he is Black. The story prompts the author to reflect on patient rights as a reminder that healthcare is called to serve, to love, to be empathetic, to be respectful, to be humble, to listen, …

“I See What You Do”: A Patient’S View Of Equity, Nikki (Charisse) Montgomery

Patient Experience Journal

As a Black woman and a patient, the author describes what it is like navigating healthcare as a person of color in the U.S. Fully aware of the disparities that exist in healthcare, she shares her personal roadmap for assessing equity as a patient searching for a new provider. In the absence of standardized ways to assess equitable outcomes, she has created her own metrics and uses them to draw her own conclusions. From her experience as a Patient and Family Advisor, the author provides clues for assessing diversity within healthcare organizations. Imagining a new existence in healthcare, the author …

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 …

Testing Of Patients First In A Real-World Setting, As A Patient Experience Accreditation Tool For Hospitals And Clinics, Carlos Bezos, Rosa M. Salazar, María Caballero

Patient Experience Journal

Many healthcare providers are developing patient experience strategies and investing in this area. Yet, patients have no means to know if a hospital is following proper patient experience standards. For this reason, it is important to certify that hospitals and clinics follow own a patient experience policy and apply patient experience standards. This is the reason why the accreditation Patients First was developed. The goal of this study is to test the accreditations’ feasibility in a real-life environment. The accreditation was tested at the Guadarrama Hospital, nearby Madrid in Spain. A mixed team between Guadarrama staff and the Institute for …

Patient And Provider Perspectives Regarding Criteria For Patient Prioritization In Two Specialized Rehabilitation Programs, Julien Déry, Angel Ruiz, François Routhier, Marie-Pierre Gagnon, André Côté, Daoud Ait-Kadi, Valérie Bélanger, Marie-Eve Lamontagne

Patient Experience Journal

To increase fairness and equity in access to rehabilitation services, a strategy emerging from the literature is patient prioritization. Selecting explicit prioritization criteria is a complex task because it is important to simultaneously consider the objectives of all stakeholders. The of this study was to compare service users’ and service providers’ perspectives regarding patient prioritization criteria in two rehabilitation programs. We conducted a multiple case study in two rehabilitation programs, i.e., a driving evaluation program and a compression garment manufacturing program. We sent a web-based survey asking two groups (patients and providers) to individually produce a set of criteria, then …

Exploring Mental Health Experience In Individuals Living With Temporomandibular Disorders, Wafaa Safour, Richard Hovey

Patient Experience Journal

Despite the evidence supporting deteriorating mental health because of temporomandibular disorders (TMDs) conditions, there is limited evidence of TMD patients' experience regarding how their mental health is affected by the disorders. As a sequence of these conditions, TMD patients suffer from physical and mental complications, not to mention the loss of food enjoyment. In this study, we aim to explore TMD patients' lived experiences who had changed their dietary habits concerning their mental health. Six participants were interviewed to answer open-ended questions during semi-structured interviews regarding their mental health experiences with TMD-related food routine changes. These interviews were held face-to-face …

Co-Production Of The Quality Of Patient-Centered Outcomes Research Partnerships Instrument For People With Mental Health Conditions, Karen L. Fortuna, Amanda Myers, Jessica Brooks, Caroline Collins-Pisano, Skyla Marceau, Sarah Pratt, Kathy Lyons, Robert Walker, Shavon Thompson, Kaycie Greene, Willie Pringle, Katina Carter

Patient Experience Journal

Mounting scientific evidence over the past decades in the field of psychiatry has shown community engagement in research produces more relevant research, increased uptake of research findings, and better clinical outcomes. Despite the need for the integration of community engagement methodologies into the scientific method, doctoral and master's level competencies in the field of psychiatry commonly do not include dedicated training or coursework on community engagement methodologies. Without appropriate training or research experience, attempts to facilitate community engagement are often ineffective and burdensome and leave stakeholders feeling disenfranchised. The goal of this study was to co-produce an instrument designed to …

Partnering With Patients To Design A Prehabilitation Program For Optimizing The Patient Experience Through General Surgery, Jacqueline Francis-Coad, Dale Edgar, Caroline E. Bulsara, Alix Barrett-Lennard, Kristine Owen, David Fletcher, Fiona Wood, Anne-Marie Hill

Patient Experience Journal

The objective of this study was to explore patients’ experiences when preparing for and undergoing general surgery at a large tertiary hospital. Findings aimed to inform the development of a prehabilitation program to empower patients to optimize their recovery and enhance their experience of general surgery. A qualitative exploratory research approach was utilized. Patients (>18 years) attending for elective general surgery between May and July 2018 were invited to participate. Four focus groups (n=18) and an interview were conducted to reach saturation. Deductive content analysis was used to map responses against theoretical determinants of health behavior change. Patients described …

The Experiences Of Rural British Columbians Accessing Surgical And Obstetrical Care, Aria Jazdarehee, Anshu Parajulee, Jude Kornelsen

Patient Experience Journal

The attrition of small volume surgical and maternity services in rural Canada over the past three decades has made access to these services especially challenging for rural citizens. While many of these closures have occurred as consequences of regionalization, a strategy to regionally centralize healthcare services, many studies investigating outcomes of regionalization have focused on costs and medical endpoints rather than the direct experiences of the rural patients affected. In this study, we aimed to understand and document the experiences of rural residents accessing procedural and maternity care both locally and away from home. This study is part of a …

Needle Phobia: How To Improve The Child's Experience During Blood Drawing, Maria D. Navarro, Helena Illera, Bonaventura Ruíz, Montserrat Naudó, Núria Serrallonga, Sonia Tordera, David Kornmehl, Lola Crevillén, Ana Bosque, David Nadal, Mercedes Jabalera

Patient Experience Journal

Pediatric diseases, pain and hospitalization have an important impact on children and their families. This is especially significant when considering common invasive procedures, such as blood drawing. The objectives of the study were to assess the experience of children and families during the blood drawing procedure and suggest methods for improvement. The study was conducted in a children’s hospital in Barcelona, Spain, between 2018 and 2020. A mix-method design or combination of qualitative and quantitative methodologies was developed. We carried out a search of the literature, a design thinking approach, and a survey. Results from the qualitative approach identified areas …

Surveying Pediatric Caregivers’ Readiness For Dyad Isolation In The Hospital During Covid-19, Shanqing Yin, Mei Zi Quek, Celestine Mun Ting Yeo, Sylvia Mun, Ronghui Li, Derrick Chan

Patient Experience Journal

The onset of any emerging outbreak is stressful for everyone. Singapore was one of many countries affected early by COVID-19. In response, many precautionary measures were quickly initiated, including the isolation of suspected COVID-19 pediatric cases, and their caregivers were isolated together with their hospitalized children as a result. Caregivers play an important role in facilitating their child’s health in the hospital. Rooming in with their children during hospitalization promotes the benefits of parental presence and reduces separation effects. However, sudden admission with strict movement restrictions poses stress to these caregivers too. This study ran a 3-part paper-based survey to …

Patients’ And Family Caregivers’ Perceptions Of Doctor-To-Doctor Advice And Electronic Referral Notifications In Alberta, Yong Li, Annabelle Wong

Patient Experience Journal

Effective communication between health professionals and patients is essential to patient safety and quality care. Primary care providers seeking specialist advice to manage patients’ conditions in the community has recently been adopted to improve timely access to specialty care and increase the efficacy of the referral process. To understand patients’ and family caregivers’ perceptions on doctor-to-doctor advice for non-urgent clinical questions and electronic referral communications with patients in Alberta, a mixed method online survey was conducted by Alberta Health Services’ Access Improvement team. A total of 1,422 patients and family caregivers living in Alberta were included in the quantitative and …

The Association Between An Established Chief Experience Officer Role And Hospital Patient Experience Scores, William Breen, Seongwon Choi, Kristina "Ria" Hearld, Stephen J. O'Connor, Edward Rafalski, Nancy Borkowski

Patient Experience Journal

The healthcare industry is currently reacting to multiple stakeholders demanding improvements to the patient experience. Some healthcare organizations are implementing new management structures, i.e., the role of Chief Experience Officer (CXO). This study statistically reviewed descriptors associated with hospitals that have and have not created and filled the role of CXO and, more importantly, measured the association between the CXO role and results of patients’ perceptions of their experience of care as measured by publicly reported Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) results. This study was conducted utilizing data gather on hospitals in three states, California, Florida, …

Safety Participation At The Direct Care Level: Results Of A Patient Questionnaire, Lenora Duhn, Nathaniel Gumapac, Jennifer Medves

Patient Experience Journal

Understanding how patients can be engaged in safety-related activities at the direct care level is of current relevance given global efforts to reduce harm in hospitals. As part of a multiphase study, including a descriptive, exploratory qualitative study (Duhn & Medves, 2018), patients were asked to respond to a brief questionnaire to quantify how they viewed their patient-reported safety participation behaviours while in hospital. This paper is a summary of those responses. The 8-item questionnaire was, in part, used to help address a secondary research question of the larger qualitative study, specifically: What behaviours do patients report in promoting their …

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 …

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).

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The Paradoxical Injunctions Of Partnership In Care: Patient Engagement And Partnership Between Issues And Challenges, Khayreddine Bouabida, Marie-Pascale Pomey, Genevieve Cyr, Ursulla Aho-Glele, Breitner Gomes Chaves

Patient Experience Journal

Partnership in care and patient engagement is an expanding approach and tremendously promising for improving the quality of healthcare services. However, the approach could be subject to many issues and challenges of various kinds. In this paper, we develop a reflection of the challenges and issues that the approach of patient engagement and partnership in care is facing. After a brief presentation of certain key concepts of partnership in care and patient engagement, we discuss in this paper the most worthy of consideration issues that we identified and classified as follows: Political, Financial, Organizational, Clinical, and Ethical Issues. We then …

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 …