Medicine and Health Sciences Commons^™

Patient Engagement In An Academic Community-Based Primary Care Practice’S Management Committee: A Case Study, Emmanuelle Trépanier, Marie-Pascale Pomey, Paule Lebel

Patient Experience Journal

Patient engagement in primary care has been the focus of many studies; however, little research has evaluated its added value to organisational management in an academic community-based primary care practice (ACBPCP). In 2017, managers of an ACBPCP in Montreal, Canada, decided to integrate patients into the organization’s management committee to enhance the quality and relevance of decision-making for clinical services, education and research.

Objectives were to 1) assess patients’ role and influence on an ACBPCP management committee’s decision-making process; 2) identify the facilitators of and obstacles to patient involvement in this context; and 3) evaluate the impact of this innovative …

Motivations, Experiences, And Aspirations In Patient Engagement Of People Living With Metastatic Cancer, Patricia L. Stoop, Leslie Duran

Patient Experience Journal

The objective of this patient-led study was to explore the motivations, experiences, and aspirations of people living with metastatic cancer who volunteer in patient engagement. This qualitative study filled a gap in lived experience research about patient engagement by focusing on an oft ignored population – those living with metastatic cancer. We used a patient-oriented research approach throughout the research cycle from proposal development to data analysis. A Patient Partner helped develop the project proposal. We selected a qualitative descriptive design to best align with our patient-oriented research goals. The first author, a peer researcher with metastatic cancer, conducted semi-structured …

Patient Satisfaction While Enrolled In Clinical Trials: A Literature Review, Ilufredo Y. Tantoy, Andrea N. Bright, Evan Paelmo, Emily I. Moreland, Ashley N. Trost, Joan Pasquesi, Charlotta Weaver, Richard T. D'Aquila

Patient Experience Journal

Patient satisfaction surveys may not adequately reflect organizations that conduct research in patients who enroll in clinical trials. The purpose of this systematic literature review was to summarize the current state of knowledge of patient satisfaction while enrolled in clinical trials utilizing a widely used, validated patient satisfaction instrument. A comprehensive literature search was conducted using CINAHL, EMBASE, PsycInfo, PubMed and Web of Science. Studies were evaluated in terms of clinical trial participation; assessment conducted during or after participation; utilization of a validated instrument; a pharmacological intervention; and the paper was published in English. Only nine studies met this review’s …

Implementing Pods (Patient Oriented Discharge Summary) In An Acute Medical Urban Health Setting In Vancouver, Canada, Agnes T. Black, Suzanne Nixon, Macleod Meghan, Christine Wallsworth, Lena Cuthbertson, Beena Parappilly, Jay Macdonald, Kate Mcnamee, Cheryl Prinzen

Patient Experience Journal

The transition from hospital to home or community is a vulnerable time for patients and families, who face risks associated with misunderstanding instructions about medications, self-monitoring and when to seek emergency care. The quality of the discharge process can have a significant impact on patient confidence, overall patient experience, ability to manage health at home, and hospital readmission rates. Patient Oriented Discharge Summary (PODS) is a standardized form and set of process changes, utilized to overcome communication barriers faced at discharge. We implemented PODS in two Acute Medicine units of a tertiary care hospital in western Canada and used a …

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. …

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 …

Using Design-Thinking To Investigate And Improve Patient Experience, Jennifer Smiechowski, Megan Mercia, Kyle Kemp, Elizabeth Oddone Paolucci, Maria Santana, Rahim Kachra

Patient Experience Journal

Understanding and enhancing the patient experience can lead to improved healthcare outcomes. The purpose of this study was to capture a comprehensive and nuanced understanding of the patient experience on an inpatient medical teaching unit in order to identify key deficiencies and unmet needs. We then aim to implement a design-thinking methodology to find innovative ways to solve these deficiencies. Here we present the first two phases of this four-phased study. We retrospectively and prospectively collected quantitative data about patient experience with the Canadian Patient Experiences Survey-Inpatient Care. We then used this data to guide patient interviews. We identified several …

Focus On Optimal Health, Not Ideal Health, John M. Roll

Patient Experience Journal

Providers strive to help patients live the best, healthiest life they are capable of living. However, those efforts should involve a careful assessment of what the patient’s optimal health status is. It is deleterious to the therapeutic relationship to drive a patient towards a health status they are not able to attain. This article provides a brief commentary on the author’s experience as a patient to illustrate this point.

Experience Framework

This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).

• Access other PXJ articles related to this lens. …

How To Address Fear: A Patient’S Perspective Of Seeking Care During Covid-19, Rosie Bartel, Sydney Hoel, Nasia Safdar, Mary Jo Knobloch

Patient Experience Journal

This article is a narrative of one patient’s experience during COVID-19. As a non-COVID patient, she shares her personal fears, the fears of others in her family and the fears of the healthcare professionals. These fears have made navigating the healthcare systems stressful for patients but also caused patients to avoid them completely. In some cases, this avoidance led to delayed diagnosis, missed diagnosis and death. When healthcare providers guide patients through the process of seeking in-person healthcare, the outcomes were more positive for everyone involved but especially for the patients and their care partners. The patient’s voice is needed …

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 Experience, Satisfaction, And Emergency Department Utilization Of Pediatric Patients With Sickle Cell Disease During The Covid-19 Pandemic, Alexandra E. Kirsch, Nataly Apollonsky

Patient Experience Journal

The COVID-19 pandemic has influenced how patients utilize healthcare. This study examines the utilization, experience, and satisfaction of patients with Sickle Cell Disease (SCD) in the pediatric Emergency Department (ED) during the COVID-19 pandemic compared to the care they had received before the pandemic. The authors surveyed fifty-eight participants ages 14 months to 20 years who presented to the ED for a complaint related to their SCD during the COVID-19 pandemic. The study analyzed five variables: race, SCD severity, hemoglobin (Hgb) genotype, who completed the questionnaire (patient versus parent/guardian), and whether the ED visit resulted in an admission to the …

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 …

Sociodemographic Characteristics And Patient And Family Experience Survey Response Biases, Lauren N. Brinkman, Myra S. Saeed, Andrew F. Beck, Michael C. Ponti-Zins, Ndidi I. Unaka, Mary C. Burkhardt, Jareen Meinzen-Derr, Samuel P. Hanke

Patient Experience Journal

Enhancing Patient and Family Experience (PFE) is vital to the delivery of quality healthcare services. Sociodemographic differences affect health outcomes and experiences, but research is limited on biases in PFE survey methodology. We sought to assess survey participation rates across sociodemographic characteristics. This retrospective study analyzed a health system’s ambulatory PFE survey data, collected January 1 – July 31, 2019. Outcomes of interest were rates of survey response, completion, and comments. Predictors included respondent-reported race, ethnicity, language, and measure of social deprivation attached to a respondent’s home address. Addresses were geocoded to census tracts. The tract’s degree of socioeconomic deprivation …

A Patient’S Narrative Of Engaging Hiv Care: Lessons Learned To Harness Resources And Improve Access To Care, David Lessard, Serge Vicente, Patrick Keeler, Bertrand Lebouché

Patient Experience Journal

In Canada and the USA, about 30% of people with HIV are uninsured or not covered by government-subsidized health insurance. This paper presents a patient’s narrative of his experience being diagnosed with HIV and accessing care in the midst of his process of immigrating to and studying in Canada. The narrative explores how Vincent Croft (pseudonym) has coped with the chronicity of the infection and its associated social stigma, and the temporary solutions he found to access treatment. Engaging with healthcare providers, researchers, and other people living with HIV has allowed Croft to share his experience, including the barriers he …

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 …

The Value Of Community Psychiatric Services For The Elderly’S Dementia Caregiver Group: Exploring The Perspectives Of Participants, Elise Greto

Patient Experience Journal

Community Psychiatric Services for the Elderly (CPSE) at a large teaching hospital in Toronto has offered a monthly support group for caregivers of persons with dementia for over 30 years. Participants were surveyed in January 2018 about group attendance, benefits of attending the group, and areas for improvement. Results are shared in this case study. A total of 8 participants responded to the survey with a response rate of 47%. The feedback was predominantly positive. The most prevailing theme that emerged from the survey responses was group members’ appreciation for the opportunity to meet with one another to discuss relevant …

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 …

Delivery Of Patient Education And Support Using An Online Digital Platform For Patients Undergoing Primary Hip And Knee Replacement: The Patient’S Perspectives, Paul N. Baker, Natalie L. Clark

Patient Experience Journal

The aim of the present evaluation was to evaluate the use of an online digital platform (ODP) to deliver patient education and support (PES) to patients undergoing total hip replacement (THR) and total knee replacement (TKR) surgery. Six objectives were outlined to assess the following areas: patient engagement; ease of use; understanding of information; quantity of information; aid of recovery; suggestions for improvements. A qualitative service evaluation of the ODP. Participants included patients who were registered to the platform for THR or TKR, were at least 90 days post-surgery and had accessed at least one carepac. Interviews followed a semi-structured …

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. …

An Evaluation Of The Effectiveness Of A Unique Patient Experience Response Program That Provided Virtual, Visual And Emotional Connectivity To Patients And Families During The Covid-19 Crisis, Diane Burshtein, Donna Powers

Patient Experience Journal

In April 2020, the New York State Department of Health issued guidelines regarding suspension of hospital visitation due to coronavirus disease 2019 to protect staff and patients and prevent spread of the virus. Recognizing that patients would need extraordinary emotional support as they faced this frightening journey, two hospitals from a health system in the national epicenter provided avenues to bridge gaps in connectedness and communication. Our program provided virtual, visual and emotional connectivity by utilizing repurposed staff to serve as patient experience ambassadors. This program reduced the burden on clinical staff while preventing furlough. A descriptive correlational study …