Health Services Research Commons^™

First, Do No Harm: The Patient's Experience Of Avoidable Suffering As Harm, Ashley Bauer Mha

Patient Experience Journal

Although my entire career has been spent in Patient Experience, nothing I have learned from data, evidence-based practice, or experience-based correlations, has been near as impactful as what I learned from being a patient. This article discusses my own experiences as a patient. I ask readers to consider instances of avoidable suffering as sources of harm that negatively impact patient perceptions, erode trust in care providers and healthcare delivery systems, and create barriers to engaging patients in their care. Recognizing how avoidable suffering creates harm challenges traditional views of Patient Experience as hospitality-based “soft skills” and helps to establish patient …

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 …

Condition Help: 10 Years Of Experience Enhancing Our Culture Of Family Engagement, Andrew Mccormick, Catherine Polak, Michael Fox, Michele Carlson, Charles Guthrie, Michael Decker, Diane Hupp, Gabriella Butler, Andrew Urbach

Patient Experience Journal

“Condition Help” is a family activated rapid response team designed to enhance a partnership between providers and the family. Calling a “Condition Help” results in the rapid arrival of a response team (physician, nurse administrator and patient representative) that assesses the clinical status, listens to families’ concerns and promotes communication to move clinical care forward. “Condition Help” has been an active program for the last 10 years at Children’s Hospital of Pittsburgh of UPMC (University of Pittsburgh Medical Center) and has assisted in the care of 608 patient encounters. This article outlines the experience gained using this vital program, summarizes …

Wait Time Reality Check: The Convergence Of Process, Perception, And Expectation, Marian Hill, Lorianne Classen, Andrea Romay, Erika Diaz

Patient Experience Journal

There are few experiences as ubiquitous to patients as the experience of waiting. It is an occurrence that transcends diagnosis, is common to all demographics, and is shared across the continuum of care. The experience can be frustrating and full of ambiguity for patients and their families. Wait time and delays can lead to patients sensing a loss of control and magnify the feelings of anxiety they may already be suffering. In an effort to improve patient experience, a framework was developed to examine patient satisfaction as a function of expectations, perceptions, and reality. The process domain focused on the …

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 …

What Constitutes The Patient Experience Of Children? Findings From The Photo Elicitation And The Video Diary Study, Nina Karisalmi, Hanna Stenhammar, Johanna Kaipio

Patient Experience Journal

Patient experience (PX) is getting attention among researchers and healthcare service providers, but little is known about the experiences of child patients and how to explore those. This paper reports findings from a study in which two participatory research methods, photo elicitation and video diary, were applied to investigate the elements of children’s PX in the context of children’s hospital. The aim was to find out what elements constitute the PX of children aged 7–16 years. The research data were gathered in 2016–2017. Twenty-two child patients participated in the study: eight children aged between 7 and 10 in the photo …

The Pediatric Emergency Department Care Experience: A Quality Measure, Terri L. Byczkowski, Kimberly A. Downing, Michael R. Fitzgerald, Stephanie S. Kennebeck, Gordon L. Gillespie, Evaline A. Alessandrini

Patient Experience Journal

To develop and validate a measure of the quality of the pediatric emergency department care experience from the parent perspective. This was a multiphase study conducted at a tertiary-care pediatric health system using qualitative and quantitative methods. A list of candidate questions was developed to measure each of eight dimensions of family-centered pediatric emergency care described in a published framework. This list was evaluated and refined using the Question Appraisal System (QAS-99) followed by cognitive interviewing methods. Remaining questions were field tested using survey methods via telephone interviews with randomly selected parents. Composite scores to measure each of the eight …

What Medicine Can Learn From Pediatrics: A Mother's Perspective, Nancy Michaels

Patient Experience Journal

As a mother of a young adult child with Aspergers syndrome, as well as being a long-term patient myself (liver transplant in 2005), I have extensive experience in both camps. Recently my 20-year old son was admitted to a children’s hospital for a twisted colon that had to be surgically reduced. As the parent of a child with special needs and related physical health-related issues connected to him being on the autism spectrum, I was naturally very concerned about him entering a hospital (perhaps PTSD based on my own experience at moments). Surprising to me, the experience was a very …

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 …

Homeless And Marginally Housed Veteran Perspectives On Participating In A Photo-Elicitation Research Study, Keri L. Rodriguez, Daniel O. Hedayati, Lauren M. Broyles, Melissa E. Wieland, Michael A. Mitchell, James W. Conley, Shaddy K. Saba, Adam J. Gordon

Patient Experience Journal

Photo-elicitation interviewing (PEI) seems a valuable tool for engaging marginalized populations in research despite documented challenges. Given limited data on acceptability of PEI among homeless and marginally housed Veterans, this evaluation aimed to characterize their research experience. Veterans took photographs about health, health behaviors, and health care which facilitated semi-structured interviews. Their research study experience was assessed via a modified Reactions to Research Participation Questionnaire-Revised (RRPQ-R), along with additional survey and open-ended questions. Of the 20 participants who consented and participated, 16 (80%) completed the exit surveys. Most participants (>88%) indicated favorable experiences and limited drawbacks. Respondents disagreed that …

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 …

Exploring Workforce Confidence And Patient Experiences: A Quantitative Analysis, Katie M. Owens, Stephanie Keller

Patient Experience Journal

Confidence is recognized as one of the most influential factors to affect performance. Individual, leader, and team confidence play essential roles in achieving success and the absence of confidence has been connected with failure. While confidence is not a substitute for competency, it creates trusting relationships, empowerment, and resiliency to persevere when challenges arise. Objective: In this study, we examined workforce confidence in the patient experience and patient perceptions of their experience of care. Methods: We compared responses to the Patient-Centered Excellence Survey (PCES) from 41 United States hospitals, measuring workforce confidence in the patient experience provided, to patient’s ratings …

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 …

The Patient Experience With Shared Decision-Making In Lung Cancer: A Survey Of Patients, Significant Others Or Care Givers, Laurie E. Gaspar, Howard J. West, Bonnie J. Addario, D Ross Camidge

Patient Experience Journal

A survey (via SurveyMonkey) was sent to lung cancer patients, their caregivers or significant others asking about their experience in making difficult treatment decisions. Of the 198 respondents, 118 (69%) indicated that they had faced a difficult decision with respect to their lung cancer treatment. Of those, 73% indicated that they would have desired that the decision be made with their physician using a shared decision-making process, and 58% perceived that such a process had occurred. In addition, only 23% of respondents indicated that they had had the right amount of information when making the decision. Fortunately, only 9% of …

A Framework For Conceptualizing How Narratives From Health-Care Consumers Might Improve Or Impede The Use Of Information About Provider Quality, Melissa L. Finucane, Steven C. Martino, Andrew M. Parker, Mark Schlesinger, Rachel Grob, Jennifer L. Cerully, Lise Rybowski, Dale Shaller

Patient Experience Journal

Consumers choosing a health-care provider have access to diverse information including narratives by patients about their prior experiences. However, little research has examined how narratives might improve or impede the use of information about the quality of providers’ performance. This paper describes a conceptual framework for examining mechanisms by which narrative information might influence consumer judgments and decisions about providers. We conducted a conceptual review of risk communication and behavioral decision research. We synthesized the literature to form the foundation of a conceptual framework for assessing how narrative information about provider quality impacts consumer decisions about providers. We identified four …

Patients’ Stories Of Encounters With Doctors: Expectations And Anxieties, Daniella Arieli, Batya Tamir

Patient Experience Journal

The study contributes to the understanding of how patients experience encounters with doctors. The study is based on the gathering and analysis of subjective stories of 'healthy' patients who live in Israel about their encounters with doctors. On the one hand, medical encounters were described as functional ritualistic events, and the doctor was described as an indifferent clerk. On the other hand, and often at the same time, medical encounters were perceived as incredibly meaningful and potentially fateful events, and the doctor as a supreme authority. Four main inter-connected expressions of this were: 1. The encounter as a ritual: A …

The Gift Of Pain With Transformative Possibilities, Richard B. Hovey

Patient Experience Journal

This personal narrative explores the experiences of pain metaphorically as a gift. The intention of this article is to offer alternative ways to reflect on pain, life and taking risks to move from health literacy toward health agency with help. I describe my approach to decision making using the hermeneutic wager which provides a means to imagine possibilities while mindfully assessing risk. Learning to manage pain and learning to live well with pain is a gift that we are not always aware is within our grasp.

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 Of Taking Adjuvant Endocrine Therapy For Breast Cancer: A Tough Pill To Swallow, Kuang-Yi Wen, Rita Smith, Aruna Padmanabhan, Lori Goldstein

Patient Experience Journal

Adjuvant endocrine therapy (AET) has substantially improved the mortality rate among breast cancer survivors. Despite the proven efficacy, the non-adherence rate to therapy is still high. This study is aimed to examine women’s challenges related to AET adherence and management. Semi-structured interviews were conducted with six Caucasian and six African American breast cancer survivors who were prescribed for AET. The transcripts of audio-taped interviews were qualitatively analyzed. Key themes were: 1) positive beliefs in AET, 2) uncertainty about long-term adherence, 3) experiences with side effects, 4) forgetting and remembering, 5) other concerns and information needs, 6) potential intervention format, and …

Operationalizing Person-Centered Care Practices In Long-Term Care: Recommendations From A “Resident For A Day” Experience, Jennifer L. Johs-Artisensi

Patient Experience Journal

As the senior population continues to age, long-term care is positioned for growth and care recipients are demanding more person-centered care. While long-term care leaders may understand and believe in the value of person-centered care, sometimes operationalizing practices to ensure its delivery can be challenging. Using an ethnographic approach, over three years, 159 long-term care administrator-in-training practicum students each lived as a resident for 24 hours in a nursing home. Following the experience, using the Picker Institute’s framework, each participant identified and justified an Always Experience® – an optimal experience they believed should routinely occur for every long-term care resident. …

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 …

Maintaining Public Health Insurance Benefits: How Primary Care Clinics Help Keep Low-Income Patients Insured, Rose L. Harding, Jennifer D. Hall, Jennifer Devoe, Heather Angier, Rachel Gold, Christine Nelson, Sonja Likumahuwa-Ackman, John Heintzman, Aleksandra Sumic, Deborah J. Cohen

Patient Experience Journal

Low-income families struggle to obtain and maintain public health insurance. We identified strategies used by Community Health Centers (CHCs) to assist patients with insurance applications, and assessed patients’ receptivity to these efforts. Observational cross-case comparative study with four CHCs in Oregon. We observed insurance assistance processes, and interviewed 26 clinic staff and 18 patients/family members. Qualitative data were analyzed using a grounded theory approach. Patients’ understanding of eligibility status, reapplication schedules, and how to apply, were major barriers to insurance enrollment. Clinic staff addressed these barriers by reminding patients when applications were due, assisting with applications as needed, and tracking …

Patient And Provider Experiences With Relationship, Information, And Management Continuity, Jeanette Jackson, Gail Mackean, Tim Cooke, Markus Lahtinen

Patient Experience Journal

From 2003 to 2014, the Health Quality Council of Alberta (HQCA) monitored patient experiences with healthcare services through a biennial Satisfaction and Experience with Healthcare Services (SEHCS) survey. The findings consistently showed a direct link between coordination of care, an aspect of continuity of care, and healthcare outcomes. Specifically, it showed that better coordination is linked to positive outcomes; the reverse is also true. Given the critical role continuity of care plays in the healthcare system, the HQCA conducted in-depth interviews, interactive feedback sessions and focus groups with patients and providers to explore factors that influence both seamless and fragmented …

Healthcare Providers Versus Patients' Understanding Of Health Beliefs And Values, Betty M. Kennedy, Matloob Rehman, William D. Johnson, Michelle B. Magee, Robert Leonard, Peter T. Katzmarzyk

Patient Experience Journal

This study examined how well healthcare providers perceive and understand their patients’ health beliefs and values compared to patients’ actual beliefs, and to determine if communication relationships maybe improved as a result of healthcare providers’ understanding of their patients’ illness from their perspective. A total of 61 participants (7 healthcare providers and 54 patients) were enrolled in the study. Healthcare providers and patients individually completed survey instruments and each participated in a structured focus group. Healthcare provider and patient differences revealed that patients perceived greater meaning of their illness (p = 0.038), and a greater preference for partnership (p = …

The Patchwork Perspective: A New View For Patient Experience, Jason A. Wolf Phd

Patient Experience Journal

As Patient Experience Journal has continued to contribute to the expanding patient experience conversation, we too recognize this has been a significant year of progress for the patient experience movement. This progress has emerged in a number of ways in research, practice and programs that reveal a comprehensive and integrated approach is now more than ever a central consideration in a commitment to experience. This idea of interwoven efforts, begins to frame an image – a patchwork of clear, critical and comprehensive pieces that while operating distinctly each have value, yet when bringing them together have an exponential opportunity to …

Call For Submissions. Special Issue – July 2018: Patient & Family Experience In Children’S Hospitals And Pediatric Care, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce a call for submission for its special issue scheduled for July 2018 on the topic of patient & family experience in children’s hospitals and pediatric 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 children’s hospitals or pediatric care. It is encouraged that articles submitted deal directly with efforts in those care settings. The issue will look for pieces that address evidence-based efforts at improvement, practices that have impact on outcomes or stories that reflect …

Experience-Based Co-Design: A Method For Patient And Family Engagement In System-Level Quality Improvement, Bianca Fucile, Erica Bridge, Charlene Duliban, Madelyn P. Law Dr.

Patient Experience Journal

Integrating patient and family member needs, wants and preferences in healthcare is of utmost importance. However, a standardized patient and family engagement model to understand these needs, wants and preferences in order to translate into high quality improvement activities is lacking. Experience based co-design (EBCD) is an approach that enables patients, family members and healthcare providers to co-design improvement initiatives together. In this study, EBCD was employed to: 1) assess the current state of information and educational resources at a local oncology center and 2) partner with patients, family members, and healthcare providers to create quality improvement initiatives targeting identified …

Understanding The Role Of Patient And Public Involvement In Renal Dietetic Research, Andrew Morris Mr, Deborah Biggerstaff, Nithya Krishnan, Deborah Lycett

Patient Experience Journal

The objective was to consult patients on a proposed recruitment strategy to a patient and public involvement exercise. We wanted to explore the reasoning and willingness of patients to become co-researchers within a grant application. Eighteen people using the renal health service informed the consultation by action research so that their experiences could be used to guide the overall methodology. Twelve people took part in semi-structured interviews. NVIVO 10 and Framework Analysis were used to interpret emerging themes from the data. The recruitment strategy, informed by research expertise, became an experience-based expert design. The design took into account the limitations …

The Paradigm Of Patient Must Evolve: Why A False Sense Of Limited Capacity Can Subvert All Attempts At Patient Involvement, Dave Debronkart

Patient Experience Journal

This essay reviews the role of paradigms in molding the thoughts of a scientific field and looks rigorously at what two key terms mean – empowered and engaged – and how their interaction points to a new way forward, requiring a re-examination of our “paradigm of patient.” Five years ago, the Institute of Medicine’s Best Care at Lower Cost declared that patient-clinician partnerships are a cornerstone of a learning health system, a declaration that’s foundational to the era of involvement. How can we engineer that era correctly if our conception of “patient” is out of date? And how can we …

Pushing The Boundaries Of Patient Experience, Jason A. Wolf Phd

Patient Experience Journal

This special issue is designed to push the boundaries of patient experience a little farther. Beyond just examples of applying the critical principles of patient and family centered care or even practices of patient engagement, we have been pushed to move further down the perspective of partnership, to the era of “doing with” in which healthcare now finds itself. The idea of involvement as the descriptor selected to frame this issue, was due to its broad and representative nature. It reflects all the words on involving patients mentioned above, but gets further along to participation and ownership (or activation as …