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Special Issue – July/August 2020: Sustaining A Focus On Human Experience In The Face Of Covid-19, Patient Experience Journal

Patient Experience Journal

At this critical time in our shared history, we are faced with a powerful challenge, the rapid impact of COVID-19 on our healthcare systems and community. With that acknowledgement, we are refocusing our 2020 special issue of Patient Experience Journal (PXJ) to address Sustaining a Focus on Human Experience in the Face of COVID-19. Submissions received for our initially planned special issue on patient & family experience in behavioral health will remain in review and consideration for future issues of PXJ.

There are heroic efforts taking place minute-by-minute to address the clinical and personal needs of patients, while also …

Implementing Inter-Professional Patient-Family Centered Plan Of Care Meetings On An Inpatient Hospital Unit, Nicolas Hernandez, Alice Fornari, Sage Rose, Leanne Tortez

Patient Experience Journal

Inpatient plan of care meetings support efforts to encourage collaborative practice and patient-family centered care and result in an effective strategy to enhance communication and patient satisfaction. Clinical team members participated in patient/family centered plan of care meetings at a community hospital in a selected inpatient unit with full time hospitalist physicians. Quantitative data were gathered pre/post implementation from the external Hospital Consumer Assessment of Health Care Providers (HCAHPS) survey. HCAHPS data were collected independently, specifically for questions related to communication between patients, family members/guardians and the medical team and also the effects of care transition. There was a slow …

Paying It Forward: A Cancer Survivor And His Wife Share Their Reflections And Recommendations As A Patient And Caregiver, Justin Sandler

Patient Experience Journal

I grew up in the north suburbs of Chicago and had a relatively normal childhood but not necessarily an easy one. Shortly after graduating from Indiana University, I moved out west and have been working in the entertainment industry ever since. My life has been a beautiful and interesting adventure with twists and turns I could have never predicted.

In 2016 it seemed like everything was really coming together. I had been happily married to my wife and business partner Mary Lou Sandler since 2011, and we had been growing our photography/film production studio for as many years. I was …

The Essential Nature Of Experience In A Time Of Crisis And Beyond, Jason A. Wolf

Patient Experience Journal

As we have engaged with community members around the world, the last few weeks have provided a unique window into the face of this crisis as we have seen not only the deadliest days on record, but have also had some of the most hopeful conversations at the same time. While we are and still will face challenges in the weeks to come, we too have seen humanity elevated in profound and powerful ways. While it can be offered with little argument that things will never be the same, in moving forward, we too can assert and I believe, that …

Effect Of Change In The Cg Cahps Survey Instrument Recall Period On Patient Experience Scores On Healthcare Utilization, Kimberley Marshall-Aiyelawo Phd, Usn, Msc (Ret), Richard Bannick Phd, Usaf, Msc (Ret), Sharon Beamer Aud, Melissa Gliner Phd, Terry Mcdavid Ms, Daniel Muraida Phd, Janice Ellison Usaf Nursing Services (Ret), Beatrice Abiero Phd, Alan Roshwalb Phd, Mark Andrews

Patient Experience Journal

Standardized patient experience survey instruments play an important role in informing healthcare quality and process improvement. However, any changes in standardized instruments can impact the interpretation, trending, and analysis of patient reported data. This study investigates how the change in Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CG CAHPS) survey recall period, from 12- to 6-months, can impact the accuracy and quality of patient experience data. This study used primary survey data on patient experience collected in 2016. Analyses included tests of proportion and t-tests for a comparison of: 1) experience ratings, and 2) administrative data to …

Awakening From A Medical Mystery: One Patient’S Experience Of Being Undiagnosed, Dwane Unruh

Patient Experience Journal

This personal narrative pleads for a supportive and comprehensive system or sub-system similar to that which exists for cancer patients, to deal with undiagnosed illnesses. By describing the torment of living with a debilitating illness that medicine could not easily recognize, then by contrasting this experience with my wife’s experience of the cancer care system, and by referring along the way to lessons learned many years ago from reading the works of the inciteful neurologist, Dr. Oliver Sacks, I hope to inspire the medical system to develop a separate, supportive and comprehensive system to deal with the undiagnosed. As it …

Call For Submissions Special Issue - July 2020: Patient & Family Experience In Behavioral Health, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July 2020 special issue on the topic of patient & family experience in behavioral health. With a continued focus on the critical role of behavioral health in society today and a growing recognition of the importance of experience for those in behavioral health settings, a conversation on the practices in place and the identification of evidence of efforts leading to positive outcomes will be essential expanding the experience conversation in this setting. This special issue is open to all authors conducting cutting-edge research, implementing innovative practices …

“Anyone Can Co-Design?”: A Case Study Synthesis Of Six Experience-Based Co-Design (Ebcd) Projects For Healthcare Systems Improvement In New South Wales, Australia, Tara L. Dimopoulos-Bick, Claire O'Connor, Jane Montgomery, Tracey Szanto, Marion Fisher, Violeta Sutherland, Helen Baines, Phillip Orcher, John Stubbs, Lynne Maher, Raj Verma, Victoria J. Palmer

Patient Experience Journal

Experience-based co-design (EBCD) is a quality improvement approach that is being used internationally to bring service users and health professionals together to improve healthcare experiences, systems and processes. Early evaluations and case studies of EBCD have shown promise in terms of improvements to experience and organisational processes, however challenges remain in participation around shared power and decision making, mobilisation for implementation, sustainment of improvements and measurement of outcomes. The objective of this case study was to explore the emergent issues in EBCD participation and implementation in six quality improvement projects conducted in mental health, rehabilitation, blood and bone marrow transplant, …

A Next-Day, Brief E-Survey Overcomes The Excessive Variability Seen In Cahps-Style Emergency Department Surveys So That Individual Physician Performance Can Be Assessed On A Regular Basis, Tom Scaletta, Eva Hare, Christopher Sung Lee

Patient Experience Journal

Traditional CAHPS-style emergency department (ED) surveys result in excessive variability when assessing individual physician performance. The objective of this study is to measure the variability of a brief, electronic survey (e-survey). The study team also measured the association of individual physicians to demographic data, physician and patient factors, and a physician burnout assessment tool. Data from SmartContact (SmartER, La Grange, IL) is a next-day, e-survey that takes about 30-seconds to complete. This tool was used by a hospital-employed emergency department (ED) group during calendar year 2017 across 2 EDs and 37 physicians.^1,2 Variability was estimated regarding raw patient experience …

The Digital Revolution Will See You Now: Transforming Patient Experience In The Digital Era, Emily Kagan Trenchard, Laura Semlies, Sven Gierlinger

Patient Experience Journal

Industry after industry has reinvented itself in response to upstart challengers and shifting consumer expectations that are the hallmarks of this new era. The same is true in healthcare, where we have weathered the introduction of the electronic medical records, patient portals and now interoperability. But to date our industry’s digital transformation has been guided largely by government regulation – leaving the design of the future of healthcare to be driven by policy makers and executed largely by IT departments. Meanwhile, most other industries have turned to a different guru for inspiration and guidance: the consumer. Northwell Health has undertaken …

Reframing Innovation And Technology For Healthcare: A Commitment To The Human Experience, Jason A. Wolf Phd, Cpxp

Patient Experience Journal

This latest special issue of Patient Experience Journal focuses on the role of technology and innovation in patient experience. The articles included in this issue help us think about the ideas of innovation and health information technology (HIT) in some new and interesting ways. They also have us push the boundaries of what has framed what innovation and technology application look like in healthcare today. With this perspective, we explore the idea that HIT is not simply a process improvement tool; it is a means to elevate the human interactions at the heart of healthcare. Simultaneously in healthcare, innovation has …

Interprofessional Collaboration To Improve And Sustain Patient Experience Outcomes In An Ambulatory Setting, Natalie Sanchez, Kimberly Hermis

Patient Experience Journal

Patient experience is an important factor across diverse healthcare delivery settings. Despite enhanced attention to and advances in patient experience, many of the published initiatives focus on in-hospital care and opportunities have been identified to continue to strategically address patient experience in the ambulatory setting. This quality improvement initiative presents the development of an interprofessional approach to patient experience in a freestanding ambulatory oncology center. The objective of this initiative was to improve and sustain patient experience, as reflected in the Consumer Assessment of Healthcare Providers and Systems (CAHPS) scores via Press Ganey. This approach consisted of redesigning a previously …

“Can I Still Get A Tattoo?” Patients’ Experiences Across The Clinical Trajectory For Metastatic Melanoma: A Dynamic Narrative Model Of Patient Journey, Klay Lamprell, Melvin Chin, Jeffrey Braithwaite

Patient Experience Journal

Advanced and metastatic cancer has a complex diagnostic and management profile that places a heavy long-term burden on patients and healthcare systems. Little attention has been given to patients’ experiences across their entire clinical journey. Using a qualitative, longitudinal methodology over a ten-month period, we examined the symptom-to-outcome trajectories of seven people attending a medical oncology clinic at a large, public tertiary referral center in Sydney, Australia. Rather than care being experienced as a largely linear progression through diagnosis, treatment and onto surveillance in which life may return to ‘normal’, participants are embedded in a cyclical clinical pathway. Recurrence or …

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 …

Reframing The Conversation On Patient Experience: Three Considerations, Jason A. Wolf Phd, Cpxp

Patient Experience Journal

In experience, every voice matters, and each of those individual voices are contributing to an ocean of ripples that are positively impacting countless lives. In experience, no one organization owns, nor should claim to own all the answers, but many contribute to the possibilities found in elevating the human experience in healthcare. In experience, when we ensure this is a true strategic focus at the heart of healthcare we will find our way to achieving all the outcomes we aspire to achieve and know are possible in healthcare. This issue helps frame that reality through contributions from around the world …

What Older Adults Want From Their Health Care Providers, Hazel Williams-Roberts, Sylvia Abonyi, Julie Kryzanowski

Patient Experience Journal

Changing demographic trends and population needs have increased demand for chronic complex care and contributed to rising health care costs. The study sought to identify unmet health care needs of older adults and opportunities for service improvement in a high need suburban neighborhood of a prairie province. The insights provided by older adults informed the service design for a new model of integrated care in community settings. Narrative inquiry methodology was used to understand care experiences through stories. Stories of older adults’ health care journeys were elicited with semi-structured interviews. A paradigmatic approach to analysis was applied with holistic coding, …

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, …

Elevating The Discourse On Experience In Healthcare’S Uncertain Times, Jason A. Wolf Phd, Cpxp

Patient Experience Journal

Over the last five years, we have been inspired by the breadth of contributions that have helped shape the experience landscape through PXJ as well as the reach that the conversation on patient experience has had. Both the authors and readers of PXJ reinforce that the conversation on patient experience and the human experience in healthcare is not one dominated by national intent or even policy. While for some motivation has come in some part from mandated action, for most tackling this idea in healthcare is it grounded in two core realities. The first, in healthcare at its core we …

Call For Submissions - Special Issue July 2019: The Role Of Technology And Innovation In Patient Experience, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July 2019 special issue on the topic of the role of technology in patient & family experience. A focus on technology and innovation will be essential in healthcare experience, requiring new ways of thinking and doing and the technologies and tools to ensure efficiencies, expand capacities and extend boundaries of care.

This special issue is open to all authors conducting cutting-edge research, implementing innovative practices or with powerful experiences to share around efforts in either creating or implementing technology focused on positively impacting the patient experience …

Family Experience Tracers: Patient Family Advisor Led Interviews Generating Detailed Qualitative Feedback To Influence Performance Improvement, Kathryn Taff, Sheryl Chadwick, Deejo Miller

Patient Experience Journal

Patient Family Advisors (PFAs) are integral partners in quality improvement processes at Children’s Mercy Kansas City. Mimicking Joint Commission patient tracers, the Family Experience Tracer program was created to gather perspectives from end users of care and provide valuable insights regarding the patient experience. The Patient and Family Engagement team collaborates with departmental and organizational leadership to define the scope of the tracer project and determine meaningful topics to elicit feedback from patients and families. Tracers are conducted across the continuum of care and are led by a Patient Family Advisor to establish an immediate peer relationship. Patients and families …

Partners For Excellence: Committed To Meaningful Partnerships With Patients And Families In Pediatrics, Rachel Biblow, Msw, Sara Toomey Md, Mphil, Mph, Msc

Patient Experience Journal

Although the landscape in pediatrics continues to shift and change, one of the keys to our continued success remains the same… it’s about partnership. It’s clear the element of partnership is well woven through our organizations as illustrated by many of us having patient and family advisory councils, family consultants, and family partners. While this foundation is strong and essential, we must do more to truly listen, recognize the value of patient and family involvement, act upon the information shared, openly discuss issues, and strive for better together. True partnership with patients and families requires us to shift the paradigm …

Lessons For Patient Experience From The Voices Of Pediatrics And Children’S Hospitals, Jason A. Wolf Phd, Cpxp

Patient Experience Journal

This special issue on patient & family experience in children’s hospitals and pediatric care underlines pediatrics’ position as a leader in the experience journey. In pediatrics and children’s hospitals significant efforts are made to the ensure the environment is welcoming and comfortable, there is a commitment to communicating to patients – the children that are cared for – in a way they can understand, and there is a clear intention of engaging family members as an integral part of the care experience. In acknowledging that this is a special issue on pediatrics, we would miss a significant opportunity if we …

Family-Centered Caregiving From Hospital To Home: Coping With Trauma And Building Capacity With The Hope For Families Model, Anna Newcomb, L Gordon Moore, Holly C. Matto

Patient Experience Journal

Informal caregivers and families play a significant role in the recovery process of trauma survivors. However, the needs and outcomes of orthopedic caregiving family members in the months following traumatic injury have received almost no attention in the literature. Our study sought to understand the factors impacting orthopedic trauma families’ experience and their ability to cope and provide care post-acute hospitalization. Based on these findings, we designed a hospital-based program to enhance family coping and adjustment post-discharge. Caregivers (N=12) of patients with orthopedic trauma injury engaged in three in-depth semi-structured face-to-face interviews to identify their most salient concerns. Once home, …

The Consumer Has Spoken: Patient Experience Is Now Healthcare’S Core Differentiator, Jason A. Wolf Phd

Patient Experience Journal

In just a few days we will celebrate Patient Experience Journal’s (PXJ) 4^th anniversary since our inaugural publication. In these 4 short and quick years we have seen 163 articles published in our first four volumes that have stirred a significant focus on building the evidence base in patient experience. Not only has PXJ served as the central clearing house for thoughtful research, measurable cases, and insightful narratives, but it also has reinforced the breadth and depth of what patient experience truly encompasses. This integrated view was reinforced by the very voices of healthcare’s consumers in The Beryl Institute’s …

Patient Experience In The Behavioral Health Setting: Key Best Practices Throughout An Organizational Journey, Mark L. D'Agostino, Tena Vizner, Daniel Wald, Linda Espinosa, Rick Evans

Patient Experience Journal

NewYork-Presbyterian/Westchester Division, a clinical affiliate of Weill Cornell Medicine, is a 260-bed hospital providing inpatient and outpatient behavioral health care for children, adolescents, adults and older adults. From 2004-2010 the hospital’s patient experience scores on the Press Ganey® Inpatient Psychiatry Survey improved from the 14th to 53rd percentile nationally. We primarily attribute this to joining the Planetree® Affilliate Network. Planetree is a mission based not-for-profit organization that partners with healthcare organizations around the world and across the care continuum to represent the patient voice and advance how professional caregivers engage with patients and families. In 2011, hourly rounding was redesigned …

“We Were Learning Together And It Felt Good That Way.” A Case Study Of A Participatory Group Music Program For Cancer Patients, Laurie Sadowski

Patient Experience Journal

Though there are similarities to music therapy, the field of community music in healthcare, while in its infancy, is steadily growing. This case study explored how semi-formal, active music-making can play a role in illness and recovery and provide patients with a sense of voice, connection, and community, and the efficacy of community music programming in a hospital. Six participants began and three participants completed a 6-week music class learning the ukulele. Interpretative Phenomenological Analysis (IPA) was used as a method for data analysis from semi-structured pre-questionnaires, transcribed classes, transcribed post-interviews, and weekly questionnaires from both the participants and the …

Patient Experiences In Intensive Care Units: A Systematic Review, Serpil Topçu, Şule Ecevit Alpar, Bilgi Gülseven, Ayda Kebapçı

Patient Experience Journal

The aim of this systematic review is to analyze the data gathered from studies conducted to determine patient experiences in intensive care and levels of the recollection of the intensive care period that were published between December, 1998 – April, 2013. The systematic review was carried out screening of the related publications. The findings of the systematic review were studied under the following two titles: “remembering the intensive care period” and “recalled experiences” of patients. Studying 15 papers which were found suitable to the inclusion criteria of the review indicated that majority of the patients had recollection of the intensive …

The Impact Of Provider Service Networks In Florida Medicaid Managed Care On Enrollees’ Satisfaction, Sinyoung Park, Jeffrey S. Harman, Allyson G. Hall

Patient Experience Journal

Two counties in Florida were selected as pilots in 2006 for the Medicaid Demonstration Program. In reform counties, Medicaid enrollees were required to pick a managed care plan; either a Health Maintenance Organization or a Provider Service Network (PSN). PSNs are a form of managed care that provides health care services directly through a provider or network of organizations to a defined population without an intermediary. There are two types of PSNs: Physician-based PSNs and Healthcare system-based PSNs. The objective of this study is to find the differences in enrollees’ satisfaction between two different types of PSNs. To assess the …

Rebalancing The Patient Experience: 20 Years Of A Pendulum Swing, Tiffany Christensen

Patient Experience Journal

This essay looks back at two decades of the patient experience movement. The evolution of patient experience includes moving from a belief system in which patients and families are solely the recipients of care to a model in which patients and families are co-designing treatment plans, systems and policies. This evolution has taken time and continues to evolve to this day. As the pendulum swings, we see that we have made great progress and, simultaneously, found ourselves with all new challenges to overcome.