Public Health Commons^™

Narrative Medicine Skills For End-Of-Life, Elizabeth Summerfield

Patient Experience Journal

This paper looks at the potential of applying the skills of narrative medicine to end-of-life and palliative care as a means of enabling its spiritual and existential dimensions often overlooked in clinical practice. It tells the story of a family navigating the complex problem of managing the ending of a beloved mother’s life. It reflects on how the World Medical Association’s 2022 list of essential elements of care may be enacted. Amidst the dominant daily physical regime of medication and physical care, it captures the rare, unscripted moments of meaning and purpose of a lived life. It shows why these …

The Hand We Hold: Reflections On Empathetic Practice In Medicine, Aravind Sreeram

Patient Experience Journal

In this narrative, I reflect on an early clinical encounter that reshaped my understanding of what it means to provide patient-centered care. As a medical student, I entered the exam room with a preset algorithm of what to say and how to act. Yet, when faced with a patient whose suffering could not be measured or addressed by any checklist, I realized the limitations of my scripted approach. I began to understand that some of the most meaningful contributions we offer in healthcare come not from solutions, but from presence. This experience helped me see that patient partnership is not …

Changing Myths Into Truths: Dispelling Physician Misconceptions On Patient Experience, Amit Singh, Syed Ahmed, James Castellone, Michael H Kanter, Mikelle Key-Solle, Sherry Kroll, Paul A Lansdowne, Winnie Lee, Swati Mehta, Sofie Morgan, Sephora Morrison, Susan N Nathan, Sachin Patel, Alexie Puran, Donald Wickline, Liza Dileo Thomas

Patient Experience Journal

Patient experience work can be viewed by some physicians as outside their scope of practice and therefore the responsibility of non-medical providers. Assumptions may also be made by providers about what patient experience work is and is not. These myths can make it difficult to pursue meaningful patient experience related work that is in fact rooted in evidence showing improved outcomes. Moreover, these myths can downplay the importance of patient experience improvement work discouraging physicians who may be interested from pursuing it. In order to combat common myths that can be propagated about patient experience, the authors will cite research …

Beyond The Numbers: Elevating Meaning Through Metrics In Patient Experience, Geoffrey A. Silvera

Patient Experience Journal

This commentary submitted by Patient Experience Journal (PXJ) Associate Editor begins with a simple observation: sometimes, in our effort to measure everything, we miss what’s right in front of us. We look up at the data but fail to notice the larger shape taking form above it, something tall, quiet, and graceful that changes how we see the landscape. Patient experience work demands that we hold both the precision of metrics and the wonder of narrative to truly understand of patients’ experiences of care. Numbers tell us how we are performing and stories remind us why it matters. When we …

We Are Not There Yet! Why The Journey For Experience Excellence Must Persist, Jason A. Wolf

Patient Experience Journal

I am concerned, that many in healthcare think they have gotten to a “THERE” in experience excellence. That the survey scores they received are good enough, that the outcomes they are achieving reflect what they sought to accomplish. And with this in the face of today’s tumultuous healthcare landscape, decisions are being made to sustain efforts at best and in more cases now to reduce investment with the belief that things are ok. Now is NOT the time to cut short our efforts for experience excellence, or to believe there is a “there” to which we have arrived. It must …

Partnership, Collaboration, And Co-Production To Improve Patient Experience Beyond Conducting Surveys – Lessons From The Quebec Model, Canada, Marie-Pascale Pomey, Catherine Wilhelmy, Myriam Fournier-Tombs, Vincent Dumez, Cécile Vialaron, Monica Nelea Iliescu, Karina Prevost, Simon Courtemanche, Louise Normandin, Geneviève David

Patient Experience Journal

Objective: The objectives of this article are to present how, in the province of Quebec (Canada), healthcare and service partnerships have been implemented, to take stock of the current situation and to suggest ways to continue strengthening the model over the coming years, in Quebec and elsewhere in the world. Methods: Three methods were mobilized: (1) a review of the literature and reports published in recent years on implementations of partnerships in Quebec; (2) a survey sent to the persons responsible for partnerships in Quebec’s health and social services establishments; and (3) a working committee comprised of patient experts, partnership …

Peer Mentoring, Camaraderie, And Support (Pmcs) Of Southern New Jersey: Suicide Prevention Using Human Experience And Social Determinants Of Health, Ali A. Poorani, Matthew Jacobs, Patrick Carney, Jaclyn Tomasetti

Patient Experience Journal

Suicide prevention is a high priority for Veterans Health Administration (VHA). Recent data show an increase in suicide rates, especially among Veterans that had not used VHA health services and nor had received any VHA benefits. Meanwhile, data collected for the past two decades reveals a decline in suicide rates among Veterans who were recent VHA users with mental health or substance use disorders. The objective of the Peer Mentoring, Camaraderie, and Support (PMCS) Program was to explore novel ways to reengage and reintegrate Veterans into their earned VA healthcare benefits, and examine the effectiveness of this new initiative by …

“All Together”: A Case Study Demystifying Patient And Public Involvement (Ppi) In Brief Psychological Interventions Within A Community Mental Health Service For Adults In The Uk, Molly H. Nadel, Katherine Parkin, Stephanie Casey, Rachel Maciag, Alice Xie, Mu-Yin Chang, Youngsuk Kim

Patient Experience Journal

The importance and value of involving patients and the public in the decision-making processes within services designed to support them, and research projects aimed at understanding and improving those services, have long been established. This is often referred to as Patient and Public Involvement (PPI). However, establishing good quality involvement work in practical terms is often less well understood and therefore, the uncertainty surrounding this can lead to hesitation by clinicians in practice. In this paper, we will share our lessons learned and the practical outcomes of PPI when applied in an NHS community mental health service for adults. We …

The Implementation Of A Telehealth Patient Advisory Council In A Network Of Federally Qualified Health Centers, Jessica Korins, Lisa Schaffer, Nandini Shroff

Patient Experience Journal

Patient input is recognized across the healthcare field as essential for tailoring innovations and quality improvement initiatives to meet the needs of intended patient populations. This paper describes the implementation of a patient advisory council (PAC) established to provide feedback on telehealth innovations and quality improvement initiatives at a network of federally qualified health centers (FQHCs) in New York State (NYS). We report on the implementation process, success and challenges, and reflections shared by PAC members regarding their experiences.

Understanding Online Reviews Of Geriatricians: Correlations Within A Dataset Of 53,210 Physician Reviews, Yizhong Wu, Eric Reuben Smith, Nick Shaffer, Hanh Dieu Trinh, Becky Powers

Patient Experience Journal

Introduction: Online reviews are increasingly influential in how patients find and choose physicians. Patients appreciate the transparency of online reviews, and they offer an avenue for physicians to receive feedback. This cross-sectional study aims to provide insight into correlations between provider level information such as wait times or physician demographics, and the reviews patients submit online for geriatricians.

Methods: ParseHub software was used to extract and pool data from 6,631 provider profiles categorized under “geriatric medicine” on the popular open-source physician review website Healthgrades.com. Physician race or ethnicity was modeled by profile last name based on 2010 US census data. …

Family-Centered Care In Pediatric And Neonatal Intensive Care Units: A Systematic Review Of Effects On Parental Satisfaction And Length Of Stay, Vincenzo Andretta, Valentina Cerrone, Veronica Strini, Angela Prendin

Patient Experience Journal

Background: Family-centered care (FCC) is essential in pediatric and neonatal intensive care units (PICUs), potentially increasing parent satisfaction and reducing length of hospital stay, but evidence of its effectiveness is inconsistent. Objective: To assess the effects of FCC interventions on parent satisfaction and length of hospital stay in PICUs. Methods: A systematic review was conducted, with 17 studies meeting the established inclusion criteria. The McMaster tool was used to assess the methodological quality of studies, along with an assessment of risk of bias. Results: The review identified a wide range of FCC interventions, including promoting parental …

I Felt More Confident That It Would Work For Me: A Grounded Theory Of Person-Centered Interprofessional Collaboration Based On Patients’ Lived Experiences, Katherine Hope Morgan, Cristina S. Barroso, Kathleen Conroy Brown, Michael R. Bleich, Soghra Jarvandi, Elizabeth B. Strand, Shaun Rowe

Patient Experience Journal

Interprofessional collaboration (IPC) is considered the highest standard of practice for delivering care to patients with multiple, complex, and chronic conditions. Despite reported benefits of IPC, the voice of the care receiver and how or whether they experience IPC is underexplored. Our objective was to examine patients’ experiences with IPC in two rural primary care settings in the U.S., where the burden of multiple chronic conditions (MCCs) is coupled with lower life expectancies and reduced access to care. We used a semi-structured interview to assess patients’ experiences within 72 hours after an IPC healthcare visit. This study, conducted in two …

Role Of Patient-Reported Measures (Prms) In Addressing Ethical Challenges During Telemedicine Consultation: A Narrative Review, Asiya Attar, Kasturi Shukla

Patient Experience Journal

Introduction: Telemedicine has revolutionized medical care delivery by emphasizing on Patient-Centred Care (PCC). Patient Reported Measures (PRMs) can assist in providing PCC since it assesses the treatment outcomes and patient experience. However, using PRMs is not just limited to gauging clinical efficiency; it can also play a role in addressing the ethical challenges in telemedicine. Yet this aspect of PRMs remains underexplored. Method: Literature search was conducted using a combination of keywords from the Google Scholar, Scopus, and Web of Science databases. 126 peer-reviewed journal articles in English from 2015 to 2024 were screened, and 34 relevant full-text …

Understanding Patient Experiences: A Qualitative Study On Communication And Cultural Competence In Multiple Sclerosis Care, Vaishnavi Sridharan, Charee Thompson, Rola Mahmoud, Minnatallah N. E. Eltinay, Chungyi Chiu

Patient Experience Journal

Objective: Effective communication is crucial in multiple sclerosis (MS) care, influencing patient satisfaction, self-management, and health outcomes. This study explores the experiences of people with MS (PwMS) regarding communication with healthcare providers and between providers within healthcare systems. Methods: This qualitative study analyzed open-ended responses from 590 participants in a national cross-sectional survey. Thematic content analysis was conducted to explore MS patients’ experiences with healthcare communication and care delivery. Results: Three major themes emerged: (1) Patient-provider communication, where 62.9% of participants reported positive experiences, citing responsiveness and empathy, while 37.1% noted issues such as inattentiveness and rushed consultations. (2) …

“Why Should Anyone Want To Make Things Better For Me Particularly?” – A Qualitative Exploration Of Care Opinion And Nhs Care Improvements, Emma Berry, Zoe Skea, Marion K. Campbell, Louise Locock

Patient Experience Journal

Care Opinion is an online platform which enables people to share anonymous feedback (known as “stories”) about their experiences of UK healthcare. In Scotland, this platform has official government backing, though healthcare organisations are not obliged to use it. Care Opinion staff review and edit these stories, acting as moderators. Healthcare staff are invited to respond to stories and are encouraged to use it for healthcare improvement. However, the number of changes made and registered on the platform is relatively small. This paper brings together findings from interviews with story authors (those sharing experiences), NHS staff and Care Opinion moderators …

Psychosocial Dimensions Of Living With Hep B: Notes From The Field: The Lived Experience Of A Mother Raising A Daughter With Hepatitis B, Julie Gerhardt

Patient Experience Journal

What follows is based on the interweaving of three points of view each of which contributes to an understanding of the experience of living with Hepatitis B: (i) as the mother of a daughter who was diagnosed with HBV at 5 months and who still, at age 22, carries traces of the surface antigen in her blood; (ii) as a participant in the Hepatitis B Foundation’s (HBF) “Storytellers” program in which those impacted by the disease meet with others to share experiences and narrate a short video posted on the HBF website; and (iii) as a PhD research psychologist-turned-psychoanalyst interested …

My Husband Didn’T Have To Die: A Doctor Reflects On All That Went Wrong With Her Husband’S Care In One Of The Nation’S Top Medical Centers, Joanna A. Cooper

Patient Experience Journal

The outcomes of complex care are never predictable. Despite this, reflecting on my husband’s care and his untimely death, I am certain that his fate would have been different with better communication, attention to detail, collaboration, and measures of curiosity, humility, and compassion.

Holding Space: An Effective Intervention For When Hope Wanes, Annette Lane, Marlette Reed, Rose Schroeder

Patient Experience Journal

Holding space is a person-centered, non-judgmental approach to working with clients. This approach goes beyond listening to client concerns; it entails deep listening and being present, developing trust with clients, and helping them connect goals with values. Within this brief account, the concept of holding space is described. What it is and is not is explained. Examples of holding space are woven throughout in order illustrate this concept. Finally, implications for professionals are provided.

The Art Of Diagnosis: How To Actively Participate In Your Healthcare, Vladislav Ilin, Daniel J. Morgan, Brad Peckler

Patient Experience Journal

Diagnosing illness is one of the most complex and error-prone aspects of healthcare, yet patients are rarely equipped with the knowledge or tools to engage in the process actively. This article demystifies diagnosis by explaining how doctors formulate differential diagnoses, the limitations of medical testing, and the cognitive and systemic factors that contribute to diagnostic errors. Drawing on real-world examples, the article highlights the crucial role of clear communication and collaborative decision-making between patients and clinicians. It offers practical, evidence-based strategies for patients to prepare for consultations, communicate their symptoms effectively, and ask key questions that promote accurate diagnosis. By …

Taking Time And Making Space For Patient And Caregiver Partners, R. Hamilton, L. Hives

Patient Experience Journal

Patient and caregiver engagement is a paramount element to ensure the voice of lived experience is integrated and prioritized in research. However, what it looks like to actually participate in authentic patient and caregiver engagement can be challenging without understanding the experience of our patient and caregiver partners. I had the honour of interviewing a patient and caregiver partner who bestowed rich guidance about what it means to deliver excellent patient and caregiver engagement in research. Themes of the interview included taking time to collaborate, being mindful and giving gratitude, actively listening to partner voices, leading alongside patient and caregiver …

From Fear To Hope: How Communication Transformed Our Pregnancy Journey A Personal Narrative On The Critical Role Of Healthcare Communication In Patient Experience, Valan. P, Pulidindi Venugopal

Patient Experience Journal

This article emphasises the transformative potential of compassionate healthcare communication, particularly in the context of pregnancy loss. This personal narrative illustrates how varying communication approaches can significantly alter patient experiences, transforming anxiety-laden medical encounters into empowering partnerships with healthcare providers. A ten-month journey through pregnancy after a devastating miscarriage revealed the profound impact of communication quality on both clinical outcomes and emotional healing. The narrative contrasts three distinct communication environments: dismissive administrative systems that induce unnecessary stress, insensitive support staff during vulnerable moments, and a physician whose empathetic approach fundamentally transforms the entire pregnancy experience. Through a detailed examination of …

Why We Need A Patient-Centered Innovation Renaissance: A Horizontal And Vertical Integration Of Knowledge To Transform Care Pathways, Pieter Vandekerckhove, Benjamin H.L Harris, Louis J. Koizia, Ashok Handa, Chris Brainard, Steven Howard

Patient Experience Journal

We are at a pivotal moment. The future of healthcare innovation can no longer be defined solely by technological advancement or institutional efficiency. While digital tools, therapies and platforms continue to evolve, they must be embedded within a broader transformation, one that places the human experience at the centre of how we design, deliver and evaluate care. This patient-centred renaissance calls for the integration of both horizontal and vertical forms of knowledge: connecting services across the care continuum. From the literature and our experience, an unexpected byproduct of co-production with patients in health innovation and care delivery is a reduction …

“Those Boxes Do Not Hold Me”: Using Narrative Health Experiences Research To Learn From Patients And Care Partners Beyond Surveys, Rachel Grob, Barbara Warren, Erika Cottrell, Njeri Grevious, Sara Knight, Mark Schlesinger, Kate Clegg Smith, Nancy Pandhi

Patient Experience Journal

Stories are fundamental to how we understand individual beliefs and experiences, as well as collective mindsets and institutional practices. Volunteered narratives are abundant, especially on the interweb. We in the health experiences research community, however, are challenged to develop effective, equitable approaches to moving beyond surveys by hearing and responding to not just dominant voices, but also those whom research has historically ignored, silenced, or objectified. In this commentary, we describe one such approach: the Database of Individual Patient Experiences (DIPEx) methodology as adapted by the Health Experiences Research Network (HERN) for use in the U.S. context since 2015. We …

Mastering The Art Of Listening: The Human Experience Superpower, Jason A. Wolf

Patient Experience Journal

As human beings we do not live in isolation. Our existence is framed in the context of others. We are a part of families and teams, communities and countries; all which provide us with ideas and information, most delivered through the interactions we have with others. The very definition of experience itself conveys this as it opens with the words, “the sum of all interactions.”¹ Every experience that we have is impacted by interactions with others. This give and take of connection is the breath of our humanity. Through it we transfer thoughts and beliefs, words and emotions. Moments …

Contrasting Patients' And Healthcare Professionals' Experience In Hematological Cancer Care Pathway: A Narrative Study, Karine Bilodeau, Cynthia Henriksen, Camilia Aloisio Alves, Charlotte Gélinas-Gagné, Lynda Piché, Jacinthe Pepin, Virginia Lee, Marie-France Vachon, Nathalie Folch, Marie-Pascale Pomey, Nicolas Fernandez

Patient Experience Journal

Hematological cancers represent 10% of cancers diagnosed in Canada. Treatments involve complex care pathways and various modalities as well as the management and monitoring of multiple side effects. There is limited understanding of these pathways from the perspectives of the people living with cancer (PLC) and the healthcare professional (HCP). The aim of this article is to contrast the experiences of PLCs and HCPs in the context of hematological cancer care pathway. Narrative study approach was chosen for this exploratory study. Twenty-one narratives were co-created with PLCs (n = 12) and HCPs (n = 9). A structural and comparative analysis …

What Makes A Hospital Gown Functional? A Comparative Case Study Of Effective Patient-Centered Design Practices In Four (N = 4) Hospital Gowns, Robmarie Lopez

Patient Experience Journal

A hospital gown is essentially a patient uniform. Yet, the typical ``tie in the back'' hospital gown, standard garb for routine medical procedure, can have great influence over key intervention factors like receptiveness to treatment and patient self-esteem. Thus, the goals of this study are two-fold: 1) To understand patient perceptions of the standard hospital gown, and 2) To understand which principles and elements of design underpin effectively functional hospital gown redesign. Aim 1 was assessed via a comprehensive literature review of n = 5 qualitative or mixed-methods studies which surveyed or interviewed patients on their experience with the standard …

Adolescents With Cystic Fibrosis Expressing Their Possible Selves Through Photovoice: A Longitudinal Interpretative Phenomenological Analysis To Prepare A Peer Support Intervention For Healthcare Transition, Maxime Morsa, Adélaïde Vincent-Lardy, Julie Haesebaert, Catherine Llerena, Lucie Pelz, Philippe Reix, Rémi Gagnayre, Quitterie Reynaud

Patient Experience Journal

While the transition from pediatric to adult care has become a field of study and practice focused on preparing the adolescent to ``become an adult with a chronic condition'', we are conducting participatory research to develop, implement, and evaluate a peer-support intervention aimed at supporting transition from pediatric to adult care for adolescents living with cystic fibrosis within two hospital centers in France. In preparation for this intervention, we would like to better understand how peer support could support identity self-determination of the adolescents. We conducted a longitudinal qualitative research using photovoice technique. For one year, 8 French adolescents (15–18 …

Voices From The Journey: Exploring Rehabilitation Experience Of Individuals With Disabilities In A South African Province, Senzelwe M. Mazibuko, Thayananthee Nadasan Dr, Pragashnie Govender

Patient Experience Journal

Background: Globally, 16% of the population is affected by disabilities, with increasing prevalence due to non-communicable diseases and longer lifespans. This group often faces shorter lifespans, poorer health, and greater challenges than non-disabled peers. Rehabilitation services are essential for improving independence, health, and quality of life by facilitating participation in education, work, and social roles. However, in South Africa, particularly in rural areas, providing these services is difficult. Methods: This qualitative study explored the experiences of people with disabilities in KwaZulu-Natal regarding their interactions with rehabilitation services. Six participants were recruited from a private facility using purposive sampling to …

Understanding The Care Experiences And Support Needs Of Uk Adults Treated In Hospital For Meningitis, Harriet Hay, Amy Tallett Dr, Bec Aeddi, Beverley Corbett, Claire Donovan, Jane Blewitt, Juan Abad Madroñero

Patient Experience Journal

Background: Meningitis often results in ongoing and multifaceted after-effects, which can impact many aspects of people's lives, yet relatively little support and follow-up is offered. This study explored post-treatment care experiences of UK adults aged 16 and over following a recent stay in hospital for meningitis. Methods: A survey was designed to ask about hospital discharge, recovery, information provision and aftercare support. The research involved 5 semi-structured, in-depth interviews and a 15-participant online asynchronous focus group. The themes arising from this qualitative stage informed the development of a quantitative 32-item questionnaire which was hosted and promoted online between September 2022 …

Unveiling Patient Satisfaction: Exploring Demographics, Interactions, And Health-Seeking Behavior, Vanessa B. Crowther, Cassandra Shaw-Johnson, Robbya R. Green-Weir, Pia S. Woodley, Marilyn A. Weatherspoon, Errick D. Farmer, Arlesia L. Mathis

Patient Experience Journal

Objective: This study examined the social context of the patient visit (demographics, waiting room experience, patient-provider interaction) and their relationship to satisfaction with the quality of care when seeking medical treatment. It also examined satisfaction as a predictor variable for its effect on three patient behavioral outcomes. Methods: The study was implemented using a cross-sectional quantitative design among adults aged 18 and older. One hundred fifty-eight participants responded to the survey, and the final sample size was n = 147. We employed advanced data analysis, hierarchical regression, three-way ANOVA, linear regression, and logistic regression to examine four outcome variables. Results: …