Health Policy Commons^™

Twelve Principles To Support Caregiver Engagement In Health Care Systems And Health Research, Kerry Kuluski, Kristina M. Kokorelias, Allie Peckham, Jodeme Goldhar, John Petrie, Carole Anne Alloway

Patient Experience Journal

Family and friend caregivers (i.e., unpaid carers) play a critical role in meeting the needs of people across various ages and illness circumstances. Caregiver experiences and expertise, which are currently overlooked, should be considered in practice (such as designing and evaluating services) and when designing and conducting research. In order to improve the quality of health care we need to understand how best to meaningfully engage caregivers in research, policy and program development to fill this important gap. Our study aimed to determine principles to support caregiver engagement in practice and research. A pan Canadian meeting brought together 48 stakeholders …

A Case Study Of The Patient Wait Experience In An Emergency Department With Therapy Dogs, Colleen A. Dell, James Stempien, Lindsey Broberg, Alicia Husband, Lacey Jurke, Betty Rohr, Jane Smith, Joseph Rubin, Susan Tupper, Donna Goodridge, Cathie Fornssler, Logan Fele-Slaferek

Patient Experience Journal

The quality of patient healthcare is a growing concern in Canada’s hospital emergency departments (ED) due to increasing wait times and associated adverse outcomes. A developing body of literature indicates that therapy dogs can positively impact the patient experience. In 2016, members of our team partnered with the Royal University Hospital (RUH) in Saskatchewan to become the first ED in Canada to integrate a visiting therapy dog to positively impact the patient wait experience. The aim of this preliminary case study was to examine if and how this unique initiative impacted patients’ feelings during their ED wait. A brief questionnaire …

Comparing Psychiatric Care Experiences Shared Online With Validated Questionnaires; Do They Include The Same Content?, Rebecca Baines, John Donovan, Samantha Regan De Bere, Julian Archer, Ray Jones

Patient Experience Journal

Patient feedback is considered integral to patient safety and quality of care. However, limited research has compared the content of validated questionnaires with subjective patient experiences shared online. The aim of this study was to therefore identify and compare the content of psychiatric care experiences shared online with validated questionnaires. All research was conducted in co-production with a volunteer mental-health-patient-research-partner. We analysed all reviews published on the United Kingdom’s leading health and social care feedback platform Care Opinion, between 2005-2017 that discussed adult psychiatric care and compared findings with two validated questionnaires (ACP360 and General Medical Council patient feedback questionnaire). …

“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 …

Exploring Interventions To Increase Primary Care Providers’ Use Of Self-Management Goals, Nanci Reiland, Kathleen Fitzgerald, Mary E. Maragos

Patient Experience Journal

Accreditors, such as the Joint Commission, consider evidence of patient engagement strategies for awarding Primary Care/Patient-Centered Medical Home (PCMH) accreditation. This project explored the use of brief Motivational Interviewing (MI) training at a local county health center and evaluated the impact on the documented use of self-management goals (SMGs) for patients with diabetes and hypertension. Methods included a professional development program, including an online module, presentation, and educational materials. The goal was to increase providers’ MI knowledge and skills to better construct and document SMGs. The program impact was evaluated by chart review to determine the use of SMGs by …

One Patient's Experiences And Expectations In The Healthcare System: Complicated And Critical Illness With Rare Diagnosis Described By His Advocate, Jennifer Cademartori

Patient Experience Journal

The health care business serves as a profession in the art of human illness. But unlike other businesses there is the human side, the patient experience. These patients are the “customers” receiving the care, but they, unlike customers at a retail store, are vulnerable and scared and must trust their lives in the hands of people they don’t know. The paradigm must change to reflect how the health care business is handled from the eyes of the person receiving the care from the first office visit, through the inpatient stay, to follow up visits. Patient focused training on all levels …

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 …

Effectiveness Of The Communication Model, C.O.N.N.E.C.T., On Patient Experience And Employee Engagement: A Prospective Study, Agnes Barden, Nicole Giammarinaro

Patient Experience Journal

Northwell Health is a large integrated healthcare organization comprised of 66,000+ employees, 23 hospitals and over 650 medical practice locations located geographically across New York State. In an effort to align and structure interactions between patients, families and healthcare professionals, Northwell Health created a communication model, C.O.N.N.E.C.T. This unique, humanistic model is an acronym that stands for: Contact, Opening Greeting, Name/Title, Needs, Explanation, Closing and Thank. This prospective 3-part study explores the impact of the C.O.N.N.E.C.T. model on professional education, engagement and patient experience. A holistic approach was utilized including a pre and post e-learning module assessment, direct observation behavioral …

How Younger Adults With Psychosocial Problems Experienced Person-Centered Health Consultations, Line Soot, Kirsten S. Freund, Jørgen Lous, Mikkel Vass, Lotte Hvas

Patient Experience Journal

Much attention is focused on the social determinants of health. Family medicine is challenged with a growing number of vulnerable persons with psychosocial or lifestyle related problems. The objective of this work was to explore how vulnerable younger adults experience person-centered preventive health consultations with their general practitioner. The design and setting for this work were a secondary qualitative analysis of a randomized controlled trial (RCT) in Danish general practices. Younger adults (20-45) were consecutively invited to answer a screening questionnaire about psychosocial and lifestyle-related problems when visiting general practice (28 general practitioners (GPs)) for ordinary consultations. The 30% most …

Rules Of Engagement: Strategies Used To Enlist And Retain Underserved Mothers In A Mental Health Intervention, Maureen J. Baker Phd, Rn, Cnl, Beth Perry Black Phd, Rn, Faan, Linda S. Beeber Phd, Pmhcns-Bc, Faan

Patient Experience Journal

Patient engagement has been identified as both a goal and strategy to lower health care costs and improve health care outcomes. However, a lack of consensus and clarity exists as to how the process of patient engagement is implemented in clinical practice. Research addressing the underlying and crucial components of effective patient engagement is limited, leaving a significant gap as to how providers engage patients as active collaborators in their health and health care.

This study provides specific, detailed insight and description into the processes through which advanced practice mental health nurses engaged low-income depressed mothers in a mental health …

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, …

Racial/Ethnic And Geographic Differences In Access To A Usual Source Of Care That Follows The Patient-Centered Medical Home Model: Analyses From The Medical Expenditure Panel Survey Data, Zo Ramamonjiarivelo, Delawnia Comer-Hagans, Shamly Austin, Karriem Watson, Alicia Kaye Matthews

Patient Experience Journal

This study examined racial and geographic differences in access to a usual source of care (USC) and it further explored these differences among individuals who had a USC that followed the patient-centered medical home (PCMH) model. Using cross-sectional data from the Household Component of the Medical Expenditure Panel Survey (2008-2013), our sample consisted of non-institutionalized US civilians ages 18-85 (n= 146,233; weighted n = 229,487,016). Our analysis included weighted descriptive statistics and weighted logistic regressions. Although 76% of the respondents had a USC, only 11% of them had a USC that followed the PCMH model. Among respondents who had a …

Barriers And Enablers Of Patient And Family Centred Care In An Australian Acute Care Hospital: Perspectives Of Health Managers, Bradley Lloyd, Mark Elkins, Lesley Innes

Patient Experience Journal

The aim of this study was to identify and explore organisational barriers to, and enablers of, patient and family centred care within an Australian acute care hospital from the perspective of that hospital’s management staff. A qualitative study, incorporating purposive sampling and semi-structured interviews was undertaken in a 215-bed metropolitan acute care public hospital in Sydney, Australia. Fifteen health managers from a broad range of professional groups, including Medicine, Nursing, Allied Health and non-clinical services were interviewed. Interview data were recorded, transcribed, and analysed for key themes using the Framework Approach. The key barriers to patient and family centred care …

Improving The Patient Experience Through Patient Portals: Insights From Experienced Portal Users, Cynthia J. Sieck, Jennifer L. Hefner, Ann Scheck Mcalearney

Patient Experience Journal

Background: Patient portals have become part of the ecosystem of care as both patients and providers use them for a range of activities both individually and collaboratively. As patients and providers gain greater experience using portals, their use and needs related to portals may evolve. Objective: This study aimed to learn from experienced patient portal users to improve our understanding of their perspectives on portal use for collaboration and engagement as well as explore how using a portal influenced their experiences with primary care providers. Methods: Qualitative study involving 29 semi-structured interviews with family medicine patients from a large Academic …

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, …

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 …

Patient Partner Compensation In Research And Health Care: The Patient Perspective On Why And How, Dawn P. Richards, Isabel Jordan, Kimberly Strain, Zal Press

Patient Experience Journal

As patient and family engagement activity broadens across the continuum of care and expands around the world, the question of compensation for an increasingly competent advisory community continues to come up. The authors are 4 patients who are highly active in patient and public involvement initiatives internationally. Through our exclusive patient perspective, we provide insight into the reasoning and motivation that many patients are now awakening to as to why lived experience is a value that organizations need to recognize and support in concrete ways. We explore the core principles that an organization needs to consider and adopt when developing …

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 …

Can An Interactive Application Be Used To Collect Meaningful Feedback From Paediatric Patients And Their Parents In A Hospital Setting?, Janelle O'Neill, Graham R. Reeks, Lauren Kearney

Patient Experience Journal

The objective of this study was to determine the acceptability of using an interactive application (Fabio the Frog) to understand the experiences and perspectives of children and parents/carers regarding their health care encounter for the purpose of quality improvement and consumer feedback. Children’s perspectives of their healthcare were collected via the interactive application through the use of a validated survey, the Children’s Perceptions of Healthcare Survey (CPHS). The acceptability of eliciting views from children and parents via an interactive application platform was collected using an additional survey designed for this purpose. Data were collected in two phases. Overall, healthcare experiences …

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 …

Tertiary Care Centres Must Do More For Patients With Unknown Conditions: Lessons Learned From A Child, Guido Filler, Lana Rothfels

Patient Experience Journal

Postural Orthostatic Tachycardia Syndrome (POTS) is a debilitating disease with a commonly non-uniform and unspecific presentation that makes diagnosis difficult. A twelve-year-old girl, recently diagnosed with Addison’s Disease, was referred to paediatric nephrology for Fludrocortisone-induced nocturnal hypertension. She had fallen off the growth curve for both height and weight from the 50th percentile at birth to below the 5th percentile at presentation. The severity and multitude of her symptoms, including muscle weakness, poor body control, dizziness, light headedness, persistent fatigue, excessive sweating, tachycardia, chronic constipation and recurrent infection hinted at the unusual nature of this case of Addison’s. At the …

Breaking Bad News And The Importance Of Compassionate Palliative Care Of The Infant, William S. Sessions Ii, Sean Y. Kow, Elizabeth Waldrop, Kayle Stevenson, Ayo Olanrewaju, Thu Tran, Mubariz Naqvi

Patient Experience Journal

Bad news to parents regarding their infant is information that negatively impacts the parent’s feelings and view of the present and/or future. It is implemented in situations with feelings of no hope or those that induce a threat to a parent’s mental and physical well-being. The term is difficult to define as it is based on parent’s subjective feelings. However, it is important to be aware of the impact of bad news as it can cause severe anguish and stress on the parent’s emotional stability. The style of delivering bad news has a significant impact on the physician/parent relationship and …

Life With My Baby In A Neonatal Intensive Care Unit: Embracing The Family Integrated Care Model, Yasmin Lalani

Patient Experience Journal

This paper is a personal narrative that describes the components of the Family Integrated Care Model in a neonatal intensive care unit in Canada. I begin by introducing the reader with a brief story of how my son came to be admitted into a NICU. Next, I discuss three aspects of the Family Integrated Care Model that I found to be most striking: medical rounds, “do-ups” and skin-to-skin contact. I also discuss how my immersion in this healthcare setting for three months was a form of autoethnographic fieldwork, as I experienced the NICU both as a parent and a health …

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 …

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 …