Medicine and Health Sciences Commons^™

“Not Your Father’S Heart”: How Healthcare Discrimination For Neurodivergent Patients Taught Me About The Human Experience, Cate Murphy

Patient Experience Journal

It is easy to assume all patients who come into a hospital for acute crisis care have a clear understanding of how their experience will be facilitated. When a patient is neurodivergent, they cannot always agree to needed intervention. This is exacerbated by the “poor timing” of questions portrayed to impact the critical care received, sometimes irreparably. This is my story of watching my young, active partner suffer two massive heart attacks and refuse intervention because he was ashamed to admit he had not seen a doctor in over thirty years. Due to his neurodivergence, he could not process questions …

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 …

Mystay – Development Of Nurse-Facilitated Condition-Specific Multimedia Resources To Facilitate Patient Participation In Postoperative Care, Jo Mcdonall, Anastasia F. Hutchinson, Natalie Heynesbergh, Bernice Redley, Richard De Steiger, Damien Khaw, Mari Botti

Patient Experience Journal

Improved postoperative outcomes and the global drive toward the provision of patient-centred care underpins efforts to enhance the nature and capacity of patient participation in acute postoperative hospital care. In this paper, we describe the design, framework and processes used to develop a modular, procedure-specific, digital health intervention platform aimed at improving the patient experience and patient participation in care following surgery. The intervention, a multimedia application MyStay, uses bedside delivery of audio-visual and text-based information to engage postoperative patients to better participate in their care. MyStay modules are developed using an iterative, multi-method approach intended to balance procedure-specific best …

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 …

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 …

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 …

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 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 …

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 …

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 …

Using Patient Experience In Optimizing The Total Knee Arthroplasty Patient Journey, Nienke Wolterbeek, Dieuwertje J. Hiemstra, Fiona A. Van Der Hoeven, Kiem G. Auw Yang

Patient Experience Journal

Information was used to improve the patient journey and to achieve patient-centered care. Patients (>18 years, purposive sampling) were interviewed once at one point of their total knee arthrosis journey within the hospital setting. Patients were accompanied and observed during their hospital visit by one of the 19 healthcare professionals which were trained as interviewers. A qualitative research approach with in-depth and semi-structured interviews using a standardized interview guide were used to gather an in-depth understanding of the perceptions of patients. Interviews were written out with the emphasis on positive and negative feedback, quotes and observations that were made. …

Is It Fair To Compare? A Patient And Family Experience Of Two Healthcare Systems And Neurosurgical Teams Within A Two-Week Period, Laura Miller Cpxp

Patient Experience Journal

As the mother of a 28-year-old son with cerebral palsy and hydrocephalus, and as a healthcare consultant focused on patient experience and professional development, I have a unique perspective and skill set. Recently he experienced symptoms that included an excruciating headache, neck pain and lethargy. Fearing his ventriculoperitoneal shunt had malfunctioned, he went to the emergency room and was later admitted on the neuro inpatient floor for a three-day hospitalization. His original shunt had been placed in 1991, and he never had an issue with until August 2018. While in the hospital, he was informed that he was no longer …

Does The Use Of Volunteers And Playbooks In Pediatric Primary Care Clinic Waiting Rooms Influence Patient Experience?, Tara Servati, Kalpana Pethe, Victoria Tiase

Patient Experience Journal

The purpose of this secondary data analysis was (1) to understand the use of a playbook as a positive distraction technique and (2) to explore the use of volunteers in the waiting room of an outpatient pediatric clinic setting. Specifically, the study examined the impact on perceived wait time, overall quality of care, and patient experience in a convenience sample of patients. Data obtained for a pilot program for improving patient experience were aggregated for exploratory analysis. Although significant differences in perceived wait time or patient experience were not found, the cohort exposed to both the playbook and volunteer intervention …

Patient Perception Of Telephone Follow-Up After Resection For Colorectal Cancer: Is It Time For An Alternative To The Out-Patient Clinic?, Marcus Gilmartin, Nicholas Leaver, George Hall, Helena Fawdry, Seung Lee, James Nicholson, Ramya Kalaiselvan, Raj Rajaganeshan

Patient Experience Journal

The economic reality of modern healthcare provides a timely reminder to clinicians of their duty to provide outstanding and cost-effective care. Although multiple guidelines outline investigation, management and surveillance of colorectal cancer, none advocate a particular delivery method. Nurse-led telephone follow-up in multiple specialties has demonstrated equivalent clinical outcomes and patient satisfaction when compared to traditional outpatient department follow-up. This paper aims to compare nurse-led telephone and outpatient follow-up, following surgical resection of colorectal cancer (CRC), focusing on patient perceptions. This cross-sectional study distributed adapted patient satisfaction questionnaire (PS-Q 18) to patients undergoing surveillance following CRC resection via either nurse-led …

How Have Patients' Experiences Of Cancer Care Been Linked To Survival? A Systematic Review, Saleh A. Alessy, Margreet Lüchtenborg Dr, Elizabeth A. Davies Dr.

Patient Experience Journal

Patient experience of care remains an important indicator of health care quality. Although studies show care experiences are associated with health outcomes for some conditions, the situation for cancer is unclear. New datasets on cancer patients in the US, Canada, and UK linking information on experiences and survival may enable an exploration of any association. This review aimed to identify studies linking any aspect of cancer patients’ experiences to their survival, to inform future analyses. We performed a systematic review using Medline database from January 1998 until March 2018.

The settings included outpatient oncology clinics, primary care, hospitals, and cancer …

Developing The First Pan-Canadian Acute Care Patient Experiences Survey, Salima Hadibhai, Jeanie Lacroix, Kira Leeb

Patient Experience Journal

The Canadian Institute for Health Information (CIHI) in partnership with stakeholders sought to develop the first pan-Canadian patient experiences survey for inpatient care (CPES-IC). The goal was to provide a national survey standard for comparative patient experience measures to facilitate benchmarking for quality improvement. A cognitive and pilot testing study design was performed using survey data from adult inpatient care settings. Participants included the inter-jurisdictional members (IJ), survey subject matter experts and CIHI (The Group). Cognitive testing of the survey took place in three Canadian jurisdictions in English and French languages. Thirty-nine individuals participated in one-on-one interviews. During pilot testing, …

What Are The Most Important Dimensions Of Quality For Addiction And Mental Health Services From The Perspective Of Its Users?, Priscilla Liu, Shawn Currie, Jassandre Adamyk-Simpson

Patient Experience Journal

There is a need to better engage service users in improving their experience with the care received in Addiction and Mental Health (A&MH). Dimensions of patient experience that are most salient to A&MH service users still remain to be properly defined from the patient perspective. This research focuses on identifying key domains of service experience important to patients of Addiction and Mental Health using patient focus groups. In addition, through a patient and family advisory committee, patients were also engaged as co-partners of the research team. The patient advisors had a major role in overseeing the research project, assisting with …

How Patients View Their Contribution As Partners In The Enhancement Of Patient Safety In Clinical Care, Marie-Pascale Pomey, Nathalie Clavel, Ursulla Aho-Glele, Noemie Ferré, Paloma Fernandez-Mcauley

Patient Experience Journal

Despite the call from the World Health Organization for more active involvement from patients in the prevention of health care-related risks, there is still insufficient evidence about how patients can be more proactive in the safety of their own care. This study helps understand the perspective of patients as partners regarding their roles, as well as their relatively untapped potential in detecting and limiting adverse events (AEs) for patient safety. 17 patients-as-partners were interviewed on five themes: 1) Behavior of patients/relatives for avoiding AEs; 2) Competencies sought in patients/relatives to play an active role in patient safety; 3) Factors limiting …

Barriers And Facilitators To Family Participation In The Care Of Their Hospitalized Loved Ones, Lynda Bélanger, Marie Desmartis, Martin Coulombe

Patient Experience Journal

This study’s objective was to better understand family members’ experiences in order to identify how healthcare organizations can facilitate their participation in the care of a hospitalized loved one. Eighteen individuals at the bedside of a hospitalized loved one were interviewed individually. Roles at the bedside and factors that facilitated their participation or represented barriers were examined. A qualitative analysis using a mixed inductive/deductive approach was performed. Reassurance and emotional support, as well as sharing information with the healthcare team emerged as main roles. Quality and timeliness of the information received about the patient’s condition, prognosis and changes in medical …

Patient Safety: Just Ask. Patients As Reporters Of Real-Time Safety Data; A Pilot Project To Improve Patient Safety In Secondary Care, Thomas A. Cairns Dr, Iain Mccallum Mr

Patient Experience Journal

The Berwick review into patient safety recommended ‘involving patients in the healthcare organisation and seeking out the patient voice as an essential asset to monitor safety.’ (1) However routine data collection from patients in our institution is retrospective and doesn't focus on safety. Our objective was to create a patient-centred mechanism to monitor patient-perceived safety concerns and provide immediate resolution of highlighted issues. A pragmatic 6-question questionnaire was developed containing 4 scored and 2 free text questions. This questionnaire was piloted and adjusted before being administered to all inpatients meeting the inclusion criteria in our institution on one day. Safety …

An Experience Of Practitioners Navigating The Role Of Patient/Caregiver, Susan M. Shaw, Rain Lamdin

Patient Experience Journal

This journey involved one of us having (repeat) intraspinal surgery in a country far from home but of a similar culture and with the same first language. The carer travelled across the world to be present during the hospital stay. We kept a journal during our admission, and following discharge realised there were significant differences between how we had documented our experience and the record presented in the clinical notes. The particular examples we present illustrate the relationships, rules and issues that we navigated. We share our experience in the form of moments from our journal, some of them alongside …

Patient Experiences Of Cancer Care: Scoping Review, Future Directions, And Introduction Of A New Data Resource: Surveillance Epidemiology And End Results-Consumer Assessment Of Healthcare Providers And Systems (Seer-Cahps), Michelle A. Mollica, Lisa M. Lines, Michael T. Halpern, Edgardo Ramirez, Nicola Schussler, Matthew Urato, Ashley Wilder Smith, Erin E. Kent

Patient Experience Journal

The shift towards providing high value cancer care has placed increasing importance on patient experiences. This scoping review summarizes patient experience literature, highlights research gaps, and provides future research directions. We then introduce a new resource that links the National Cancer Institute’s Surveillance Epidemiology and End Results (SEER) program with the Centers for Medicare and Medicaid Services Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey and longitudinal medical claims data. We conducted a scoping review to identify relevant research within the Medicare CAHPS domain that examine factors associated with patient-reported experiences with their cancer care. Gaps indicate a need …

Developing Approaches To The Collection And Use Of Evidence Of Patient Experience Below The Level Of National Surveys, Elizabeth J. Gibbons, Chris Graham, Jenny King, Kelsey Flott, Crispin Jenkinson Professor, Raymond Fitzpatrick Professor

Patient Experience Journal

National approaches to collecting patient feedback provide trust level information which although can provide a benchmark for trusts often doesn’t provide information about specific services or patients experiences of pathways of care. This more granular level of data could be more informative for local service development and improvement. This research explored the feasibility and usefulness of such approaches. A conceptual model and standard questionnaire of patient experience was developed that might work across a range of services and pathways of care. Seven trusts were recruited as collaborating sites in which the model and survey instrument was tested. These were from …

Bringing Patient Advisors To The Bedside: A Promising Avenue For Improving Partnership Between Patients And Their Care Team, Karine Vigneault, Johanne Higgins, Marie-Pascale Pomey, Josée Arsenault, Valérie Lahaie, Audrey-Maude Mercier, Olivier Fortin, Alain M. Danino

Patient Experience Journal

This paper presents an innovative model of care, which brings patients who have already been through a similar experience of illness (patient advisors) directly to the bedside of patients, where they are viewed as full-fledged members of the clinical team. As part of a pilot project, three patient advisors were recruited and met with patients who had sustained a traumatic amputation and were admitted to the only center of expertise in replantation of the upper limb in Canada. Several individual interviews and focus groups with patients and patient advisors have revealed very promising results. Indeed, patients have expressed …

Patient Partnership In Quality Improvement Of Healthcare Services: Patients’ Inputs And Challenges Faced, Marie-Pascale Pomey, Hassiba Hihat, May Khalifa, Paule Lebel, André Néron, Vincent Dumez

Patient Experience Journal

This research focuses on the perception of patients who participated in Continuous Quality Improvement Committees (CIC) regarding their contribution, lessons learned, and challenges encountered. The committees are engaged in a care partnership approach where patients are recognized for their experiential knowledge and treated as full members of the clinical team. Based on patient interviews, we conclude that they bring a structured and thoughtful vision of their experience. They identify themselves as real partners in the care process and are grateful for the opportunity to improve the care provided to other patients by using their own experience and by bringing changes …

Feasibility Of Using Emergency Department Patient Experience Surveys As A Proxy For Equity Of Care, Helen Chiu, Nadia Batara, Robert Stenstrom, Lianne Carley, Catherine Jones, Lena Cuthbertson, Eric Grafstein

Patient Experience Journal

Collecting and examining equity data can help inform quality improvement initiatives but is a relatively new practice in health care. The overall goal of this study was to assess different methods of administering patient experience surveys as a feasible starting point in measuring equity in an urban Emergency Department (ED) that serves a diverse patient population. Socio-demographic characteristics of patients visiting an ED were compared with those of patients who responded to provincial patient experience surveys routinely administered by mail. Patient experience survey data were collected over an 11-week period in an urban ED using different survey administration methods (face-to-face …

The Relationships Between Hcahps Communication And Discharge Satisfaction Items And Hospital Readmissions, Fadi Hachem, Jeff Canar, Francis Fullam Ma, Andrew S. Gallan Phd, Samuel Hohmann, Catherine Johnson

Patient Experience Journal

The Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey has become a key metric used by organizations and patients to evaluate patient experience. Readmissions also continue to be a metric used to evaluate performance because of the added cost to both healthcare systems and patients. Both measures are also seen in programs such as Value Based Purchasing that have an effect on hospital reimbursements. Previous studies have demonstrated a relationship between patient perceptions and quality of care, and have found patients to be reliable evaluators of their care. While good communication and positive provider relationships have been related …

The Role Of Governing Boards In Improving Patient Experience: Attitudes And Activities Of Health Service Boards In Victoria, Australia, Marie Bismark, Susan Biggar, Catherine Crock, Jennifer M. Morris, David M. Studdert

Patient Experience Journal

The authors sought to determine the attitudes of public health service board members and senior executives toward patient experience and to describe the governance activities of the boards in this area. The study was based on an online survey of 322 board members from 85 public health services and semi-structured interviews with 35 board members and senior executives from 13 public health services in Victoria, Australia. The results showed that while some health service boards had high aspirations and clear plans for improving patient experience, others remained sluggish or even cynically resistant to changing their existing models of care. Interviewees …