Medicine and Health Sciences Commons^™

Using A Multidisciplinary Data Approach To Operationalize An Experience Framework, Kevin Spera, Garrett Holmes, Sunni Barnes

Patient Experience Journal

Like many healthcare organizations, Baylor Scott & White Health (BSWH) is awash with data. Often, this data is used in siloed departments to monitor safety and quality, make local business decisions, and motivate staff to improve processes to achieve sustained excellence and market share. As margins get thinner and competition from various disrupters increases, organizations have tried to improve the patient experience to remain viable as part of a calculated strategy. Nevertheless, these entities have struggled to focus limited resources for sustained improvement in patient experience. This article details how a large Texas-based healthcare system "operationalized" The Beryl Institute's Experience …

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 …

Patients’ Experiences And Satisfaction With Health Care In The Salah Azaiez Institute Of Cancer In Tunisia In 2020, Hyem Khiari, Marwa Chraiet, Rym Mallekh, Ines Cherif, Mohamed Hsairi

Patient Experience Journal

Measurement of patient-centered care is a key step to ensure quality of care improvement. The aims of this study were to evaluate the experience of hospitalized patients of Salah Azaiez Institute (SAI) of Cancer of Tunisia in 2020 and to analyze factors associated to the global satisfaction. It was a cross-sectional study. The used questionnaire was derived from the Picker patient questionnaire. Factors associated to the global satisfaction were assessed using Chi-squared and Fisher’s exact tests. The present study concerned 200 inpatients of the SAI. The Cronbach’s α of the patient experience test (PPE-15) was of 0.82 indicating a good …

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 …

The Effect Of Service Excellence Training: Examining Providers' Patient Experience Scores, Katelyn J. Cavanaugh, Monica A. Johnson, Courtney L. Holladay

Patient Experience Journal

Previous research and applied work has shown that communication-based training has the potential to impact important outcomes for healthcare organizations. Our institution developed and deployed Service Excellence, a communications-focused training, in our large academic cancer-focused healthcare system. In this study, we investigated whether patient experience improved for those with care providers who completed Service Excellence, as measured by Press Ganey Provider Experience surveys, and whether the effect of Service Excellence training depends on employee engagement. Results indicated that participating in Service Excellence training positively impacts perceptions of patient experience, and that the impact of the training is stronger for providers …

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

Patient Experience Journal

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

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

Patient Experience Journal

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

Consumer Representative Experiences Of Partnership With Health Workers In Australia, Coralie R. Wales, Judith A. Lababedi, Alison Coles, Philip Lee, Emma Clarke

Patient Experience Journal

We examine the experiences of Consumer Representatives participating in consumer engagement activities across a public health service in NSW, Australia. A team of Consumer Representatives and staff members use a participatory, constructivist paradigm and a hermeneutic phenomenological approach to analyse ten interviews with Consumer Representatives over three years 2017-2019, and three focus groups in 2020. We explore these experiences and identify the linked contextual factors from their points of view. Consumer Representatives were prepared to invest their time, but they needed respect. “Respect” from a consumer perspective was being meaningfully included, supported and heard, and activities needed to be purposeful …

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. …

The “Wreckage” Left By The Covid-19 Passage: Thoughts Of A Palliative Care Nurse, Angela Simões

Patient Experience Journal

Today, according to Johns Hopkins University, the overall number of global COVID-19 cases has exceeded 244 million with more than four million deaths. Humankind is currently facing an unprecedented global crisis. The impact of this crisis on the healthcare system is potentially far greater than we imagine. This narrative presents a series of stories lived by a palliative care nurse in COVID's time to show how the pandemic itself is a form of inequity and health disparities on the human experience. In my previous narrative, written in April 2020 and published in the Patient Experience Journal Vol. 7, Issue 2, …

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 …

Rebuilding A Foundation Of Trust: A Call To Action In Creating A Safe Environment For Everyone, Cynda H. Rushton, Laura J. Wood, Karen Grimley, Jerry Mansfield, Barbara Jacobs, Jason A. Wolf

Patient Experience Journal

Well before the COVID-19 pandemic, incivility and physical threats directed toward healthcare employees and often registered nurses was a growing concern by Chief Nurse Executive (CNE) leaders. In 2019, conversations initiated by The Beryl Institute’s Nurse Executive Council (NEC) to consider how best to achieve a much-needed balance between patient/family and staff safety have now become a critical priority to ensure the safety of everyone receiving and providing health care services. The heart of this work was organized around a set of newly developed ethical precepts designed to guide the exploration of key concepts. A call to action grounded in …

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 …

Special Issue – July/August 2022: Elevating The Human Experience Through Caring For The Healthcare Workforce, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July/August 2022 special issue on the impact that caring for the healthcare workforce can have on transforming the human experience. Well before the pandemic and elevated by it, the importance of the healthcare workforce in ensuing the best in experience has been essential. It is why at the heart of the definition of patient experience itself, that culture is identified as an essential element. More so, the Declaration for Human Experience (https://transformhx.org/) reinforced this through a foundational commitment to “understand and act on the …

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 …

Breaking Barriers To Equity: A Conversation With Dr. Julia Iyasere, Jason A. Wolf Phd

Patient Experience Journal

I was honored to have the opportunity to talk to someone I've been fortunate to meet in the past few months and who has taught me incredible things about the topic of equity in healthcare and even more so the idea of health justice, Dr. Julia Iyasere, Executive Director of the NewYork-Presbyterian Dalio Center for Health Justice. As a physician, an educator, a researcher, and I suggest an evidence-based social activist, Dr. Iyasere has led the establishment and growth of the Dalio Center in just the over 9 months since its launch. But the ideas she champions in her work …

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

Patient Experience Journal

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

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

Patient Experience Journal

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

Moving From Talk To Action: A Commitment To Ensuring Equity Must Ground Our Efforts To Transform The Human Experience, Jason A. Wolf Phd

Patient Experience Journal

When we first introduced the call for submissions for this special issue last August, we were still churning in the first wave of the COVID pandemic. Just three to four months from the start of an unending rash of unexpected and harsh realities that we were faced with in healthcare and in society at large, we too found that the moment was revealing all the weaknesses and wounds that had existed in the foundations of the healthcare system from well before the pandemic hit. Our own research at The Beryl Institute in 2020 reinforced a quiet reality: that people do …

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

Patient Experience Journal

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

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

Patient Experience Journal

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