Patient Experience Journal (PXJ, The Beryl Institute)
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Leading in Turbulent Times: Why Experience is Essential to Healthcare\u27s Future
Get PDFHealthcare systems around the world and throughout our community are being buffeted from all sides, with higher acuity patients, a vulnerable and stressed workforce, unsure finances and support structures, and even challenges to long-held medical truths. For as much as we traversed a once in a lifetime moment through the pandemic years, the residual effects and social and political sways that followed have woven their ways into healthcare overall. There is great uncertainty. There are rapidly emerging innovations. There are greater tensions in our society which show up in behaviors that impact how we provide care. These issues and more reflect the turbulent time we find ourselves in as humanity overall, and it hits hard at the heart of healthcare itself. The question we now must ask ourselves is, as healthcare leaders and experience champions, do we relent in the face of the changing tides, or do we dig into the efforts, actions, and intentions we know to be right and true? Leading in turbulent times is about the fundamentals of our human needs, and an experience focus, and purpose, can and will lead us forward
The Patient Ombudsperson\u27s Experience of Patient Partnership and Mutual Understanding of Rights
Get PDFMutual understanding between the patient and the healthcare professional can be considered a key factor of a positive patient experience in the care relationship. Mutual understanding can be promoted through patient partnership, which, in this personal and professional narrative, the author (a patient ombudsperson, known as patient ombudsman, and researcher of patient experience) describes as participation through patient rights during care. In the relationship between the patient and the healthcare professional (i.e., who acts as a care provider in the patient\u27s care), medical treatment decisions and related patient rights go hand in hand. Even in difficult care situations of mutual understanding, the patient and care provider can make decisions that are acceptable to both parties. These decisions are usually related to various shortcomings in care, access to information, and treatment by and behavior of care providers. The task of the patient ombudsperson as a third party is to support the realization of mutual understanding and partnership in treatment by advising patients on their rights. The purpose of patient partnership is to provide pre-known and equal practices for forming mutual understanding between the actors in the care relationship through patient rights
Patient Similarity Analysis and Decision Support Dashboards in Cancer Care: Patients\u27 and Other Stakeholders\u27 Perspectives
Get PDFPatient Similarity Analysis can be used to develop personalised aids for patients and clinicians making complex healthcare decisions, including those encountered in the oncology domain. However, little is known about patients’ views on how insights derived through Patient Similarity Analysis may be incorporated into decision making at the point of care. In this study, we developed a set of Patient Similarity-based dashboard mock-ups and consulted oncology stakeholders in Aotearoa New Zealand regarding acceptability. Aim: To explore oncology stakeholders’ (patients, clinicians, researchers and advocates) perspectives on the acceptability of using Patient Similarity-based decision dashboards to guide decision making. Methods: This is a qualitative descriptive study using non-random, purposive sampling, combined with advertisement and snowball recruitment. We interviewed patients, healthcare providers and other stakeholders. One-off, semi-structured interviews were conducted to elicit perspectives on the acceptability of using decision support dashboards, including: participants’ attitudes, the tools fit with the participants’ values and goals, and the potential benefits and burdens. Data was analysed using Directed Content Analysis. Results: Thirty-one participants were interviewed: 19 patients with breast or prostate cancer, seven clinicians, and five other stakeholders. Participants found the dashboard mock-ups generally acceptable, with the information presented considered relevant by most. Participants expressed enthusiasm about using Patient Similarity-based insights, as they made them feel confident in making decisions knowing what patients like them decided in similar circumstances. Participant-identified benefits of using Patient Similarity-based dashboards were: increased relatability to care recommendations based on other similar patients’ experiences; information consolidation, including about non-standard treatments; and shareability with whānau. Participants thought such dashboards would enable patients to actively participate in care decisions, enhancing equitable access to health information. A key challenge noted by both clinicians and patients related to clarity regarding the definition of ‘similar’, which would impact meaningfulness and reliability of recommendations. Conclusion: The proposed dashboard mock-ups were considered acceptable, with Patient Similarity insights reported as valuable and desired by participants. Several considerations and challenges are reported. These findings are relevant to researchers, software developers, health care providers and policy makers developing and/or implementing decision support tools in cancer care and other healthcare settings
Voices From the Journey: Exploring Rehabilitation Experience of Individuals with Disabilities in a South African Province
Get PDFBackground: 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 ensure diverse representation. Data were collected through focus group discussions, transcribed, and analyzed using reflexive thematic analysis, presented in vignettes. Findings: Three main themes emerged: support and access to services, quality and effectiveness of services, and issues of equity and advocacy. Participants noted the importance of family support, systemic and socio-economic barriers, disparities in service provision, negative interactions with healthcare professionals, and financial constraints. Conclusion: The study highlights the need for improved patient-centered care, advocacy, and policy reforms to enhance equitable access and quality of rehabilitation services in KwaZulu-Natal
HOPE Experience Essentials: The Next Generation of Service Standards at Mayo Clinic
Get PDFEngaging employees in providing exemplary patient experience has been challenging for healthcare leaders in recent years given the pressures of the regulatory environment, increases in staff burnout and rising patient expectations. Amid these challenges, addressing patient experience remains a top priority for healthcare organizations. A novel intervention has been applied at Mayo Clinic with the goal of improving both employee engagement and patient experience. Previous efforts to teach service excellence involved customer service trainings, sometimes purchased through outside vendors. This new initiative is based on our organizational culture and values, input from our employees and patients, and considers the changing needs of a contemporary healthcare workforce. It leverages management practices shown to boost an employee\u27s sense of equity, achievement, and camaraderie. It also highlights staff motivation to do their best work by involving them in conversations about the essential ingredients that make up both exceptional employee and patient experiences
Role of Patient-Reported Measures (PRMs) in Addressing Ethical Challenges During Telemedicine Consultation: A Narrative Review
Get PDFIntroduction: 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 studies were reviewed. Discussion: While telemedicine provides access to healthcare beyond the physical boundaries of traditional facilities, ethical issues like privacy, data security, and informed consent still exist. PRMs can help address these challenges, thereby improving PCC. This can help to make telemedicine consultations more ethical and equitable. Conclusion: This article emphasizes how PRMs can facilitate ethical telemedicine by providing informed consent, safeguarding data privacy, and ensuring equitable patient participation. The suggested conceptual framework applies PRMs at every phase of the teleconsultation process, ensuring a systematic route toward the facilitation of ethical standards and PCC in e-health
“Those boxes do not hold me”: Using Narrative Health Experiences Research to Learn from Patients and Care Partners Beyond Surveys
Get PDFStories 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 summarize HERN’s approach to moving the patient experience paradigm outside the boxes characteristic of survey design, and our aspirations for the future
Peer Mentoring, Camaraderie, and Support (PMCS) of Southern New Jersey: Suicide Prevention using Human Experience and Social Determinants of Health
Get PDFSuicide 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 providing excellent human experience and social support to mitigate Veteran suicide in South New Jersey. The PMCS name is taken from an acronym that is used by the United States Army referring to “Preventative Maintenance Checks and Services,” which includes tasks that are completed on a weekly, monthly, or annual basis to ensure the overall combat readiness of military equipment. Thus, PMCS closely resonates with Veterans, but this time the focus is not on equipment but rather on their overall wellness and mental health readiness. This case study addresses recruitment, selection, onboarding, and orientation methods, as well as Veterans experience journey with emphasis on the Veterans Social Determinants of Health goals. The results demonstrate significant improvements across multiple clinical and psychosocial measures. Notably, there was a 77.8% reduction in suicidality (C-SSRS), a 35.2% decrease in depression symptoms (PHQ-9), a 23.6% decrease in PTSD symptoms, and a 22.7% reduction in anxiety symptoms (GAD-7). In parallel, participants showed a 33.7% increase in perceived interpersonal support and a 26.8% improvement in psychosocial functioning. As such, PCMS model offers a potential promise for suicide mitigation
The Hand We Hold: Reflections on Empathetic Practice in Medicine
No full textIn 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 always about offering answers. Sometimes, it is about creating space to be heard and acknowledged. In a field often driven by outcomes and efficiency, this moment reminded me that healing also depends on connection. I offer this story to encourage clinicians and trainees to recognize empathy and cultural humility as essential to care, and to support healthcare systems in making room to embody these values in daily practice
Narrative Medicine Skills for End-of-Life
No full textThis 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 were the moments that ought to have dominated. But there were no learned skills to match those of clinical care, no script for professional or personal carers to elicit more of those moments. Both the presence of those unscripted moments and the absence of skill to elicit more speak to what the Lancet Commissioners declared in 2022 as the need for Western cultures to recognise the value of death by restoring the “spiritual or relational” to the process. Re-learning the language and concepts – that lost cultural literacy - is, this paper argues, essential to enabling a much improved ending of life. The field of Narrative Medicine offers a conceptual and practical framework for such learning by clinicians and non-clinicians alike