Health Services Research Commons^™

A Case Study On The Impact Of An Adapted Community Jury In Shaping The Nutrition Standards For Hospital Menus In New South Wales Australia, Tara L. Dimopoulos-Bick, Melanie Schier, Kim Crawley, Kim Sutherland

Patient Experience Journal

Community juries are a form of deliberative democracy and can engage community groups in decision-making about healthcare and service delivery issues and priorities. They can provide insights and value-based perspectives from community groups and are particularly important in resolving perennial and complex system challenges. One such challenge is nutrition in hospitals–where there is a need to balance nutrition support, variety, taste and cost. The New South Wales (NSW) public health system in Australia operates more than 200 public hospitals. When revising the Nutrition Standards in 2021, stakeholders debated the upper limits of sodium (salt) and saturated fat in food products …

Research Imitates Life: Researching Within Your Lived Experience, Bethany Donaghy, Delane Linkiewich

Patient Experience Journal

This personal narrative article seeks to bring awareness to and provide an overview of the various aspects that come with being a lived experience researcher including the host of benefits and challenges that come with conducting research within one's own area of lived experience. Throughout this narrative, we (Bethany Donaghy, an autistic person, and Delane Linkiewich a person living with chronic pain) share our perspectives on what it is like to be lived experience researchers. Our narratives discuss how the many identities we hold both improve the impact and relevance of our research while also posing challenges for us like …

Psychometric Properties Of The Impact Index In Patients With Chronic Conditions, Kd Valentine, Suzanne Brodney, Carol Cosenza, J. Lee Hargraves, Karen Sepucha, Susan Edgman-Levitan, Michael Barry

Patient Experience Journal

The purpose of this paper was to extend the generalizability of the patient-reported Impact Index by assessing convergent validity in patients with common chronic conditions. We conducted a cross-sectional survey of 1,000 English-speaking patients aged 21 and older who visited their provider in the past 6 months and were included in one or more of a hospital’s chronic condition registries. Patients completed a survey that included the Impact Index (4-item measure of how impacted a patient is by their health condition: range 0-12, higher score indicating greater negative impact on quality of life), overall health, and self-report of diagnosis of …

‘Making It Meaningful’: Co-Designing An Intervention To Improve Medication Safety For People From Culturally And Linguistically Diverse Backgrounds Accessing Cancer Services., Ashfaq Chauhan, Bronwyn Newman, Elsa Roberto, Ramesh Lahiru Walpola, Holly Seale, Melvin Chin, Reema Harrison

Patient Experience Journal

This study reports on the process of using an adapted Experienced-Based Co-Design (EBCD) conducted with culturally and linguistically diverse (CALD) consumers and cancer service staff to co-design the novel ‘Making it Meaningful’(MiM) instrument at a cancer service in Australia. Multi-source experiential and contextual information was gathered in phase 1 of the co-design and this evidence, coupled with knowledge gathered via a feedback event was used to inform three co-design workshops in phase 2. A series of meetings were conducted prior to and in between the workshops. Theory was progressively integrated into the workshop content. Two Mandarin speaking CALD consumers and …

Patient-Centered Care Frameworks, Models And Approaches: An Environmental Scan, Aghna Wasim, Maria Sajan, Umair Majid

Patient Experience Journal

Although the definition of patient-centered care (PCC) remains unclear, researchers and healthcare professionals describe the concept as treating the patient as a unique human being with consideration for their physical and psychosocial needs and emphasize the importance of shared-decision making between patients and healthcare professionals. However, discussion around the connection and overlap between PCC and patient and family engagement (PE) has been limited. Some authors describe PE as an operationalization of PCC, while others consider PE a type of PCC. An enhanced understanding of PCC might allow for improvements in implementing PE across healthcare systems. Insight into the operationalization of …

Digital Patient Engagement At A Perioperative Surgical Home Implemented Community Hospital, Srinivasan Sridhar, Amy Mount Hunter, Bernadette Mccrory

Patient Experience Journal

Patients in rural areas typically require more perioperative ‘optimization’ for surgery. The rural healthcare systems often overwhelmed with coordinating perioperative services and deliver less than optimal surgical outcomes. This is due to limited supporting microsystems and ability to effectively engage and track patients over the 120-day perioperative period to limit post-surgical complications. The study assessed longitudinal patient engagement within a newly established Perioperative Surgical Home (PSH) at a rural community hospital serving 10+ surrounding counties to identify barriers and best practices for engagement. A digital patient engagement platform was implemented and used to assess longitudinal patient outcomes and engagement from …

A Concept Analysis Of The Patient Experience, Tanja Avlijas Rn, Mscn, Janet E. Squires Rn, Phd, Michelle Lalonde Rn, Phd, Chantal Backman Rn, Phd

Patient Experience Journal

Patient experience, an essential indicator of quality patient care, is of increasing importance to hospitals that want to improve and maintain strong patient experience metrics to remain competitive in the business of healthcare. The aim of this study was to clarify the concept of the patient experience by identifying its existing definitions, methods of measurement, and underlying themes and attributes, to differentiate it from similar concepts and propose an operational and theoretical definition to guide valid and reliable development of future assessment tools. Walker and Avant’s eight-step methodology served as the framework for this concept analysis. A literature search, using …

Development Of An Experienced Quality Measure For Clients, Informal And Formal Caregivers In Home Care In The Netherlands: A Participatory Action Research, Roy Haex, Theresa Thoma-Lürken Phd, Anna J.H.M. Beurskens Phd, Sandra M.G. Zwakhalen Phd, Rn

Patient Experience Journal

To optimise home care provision and to identify potential improvements in the care process, it is important to gain insight into the care experiences that influence care quality. The aim was to develop a qualitative experienced quality measure for home care in The Netherlands, facilitating conversations between clients and caregivers in generating possible points of improvement for the primary care process. A participatory action research design to develop the measure following three iterative cycles, using various data sources in evaluating requirements related to the goal, feasibility in care setting, and usability in the care process. The final design comprises an …

Resource Utilization Among Informal Caregiver Of Lung Cancer Patients Undergoing Treatment, Charlotte T. Lee, Clarelle L. Gonsalves, Jenny Gao-Kang, Wyatt G. Pickrell, Ruth F. Barker

Patient Experience Journal

The objective of this study is to explore patient and caregiver factors that shape the use of available resources to support caregiving for lung cancer patients undergoing treatment. A mixed-method study was conducted at one regional cancer centre within the Province of Ontario, Canada, using concurrent triangulation design. Adult patients with lung cancer (n=46) and their caregivers (n=42) (37 patient-caregiver dyads) were invited to complete a one-time study survey. Informal caregivers (n=20) also participated in a one-time semi-structured interview. Descriptive statistics and Pearson’s correlation were used to examine patterns of resource utilization and associations among study variables. Content analysis was …

Understanding Patient Experiences Before And During The Covid-19 Pandemic: A Quasi-Experimental Comparison Of In-Person And Virtual Cancer Care, Linda Watson, Claire Link, Siwei Qi, Eclair Photitai, Lindsi Chmielewski, Diane Fode, Andrea Deiure

Patient Experience Journal

The COVID-19 pandemic prompted the immediate widespread implementation of virtual care appointments in Cancer Care Alberta (CCA). This study aimed to compare patient experiences and satisfaction with in-person care provided prior to the pandemic and virtual care provided after the COVID-19 outbreak. Surveys were conducted to compare patient satisfaction, using the Your Voice Matters (YVM) experience survey, between patients in the pre-pandemic in-person (baseline) and post-outbreak (virtual) cohorts. Generalized Linear Models (GLMs) with an ordinal logistic link were used, adjusting for self-reported health status and other covariates, to investigate the association between cohort type and patient satisfaction. Despite having higher …

Consumer Experience Of Mental Health Services During The Covid-19 Pandemic: Evidence From An Australian Mental Health System, Sarah Kelshaw, Jason Boyd, Irene Gallagher, Grant Sara

Patient Experience Journal

COVID-19 has increased the need for mental health care but disrupted its delivery. We examined impacts of the first year of the COVID-19 pandemic on consumer experience of NSW hospital and community mental health services, compared to their pre-COVID baseline. We also examined whether increased telehealth use was associated with changes in the quantity or experience of community mental health care. Data were 73,488 Your Experience of Service (YES) surveys from state mental health services in New South Wales (NSW), Australia, grouped into three periods: pre-COVID (January 2018 to March 2020), early-COVID (April to June 2020) and stable-COVID (July to …

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 …

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

Patient Experience Journal

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

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

Patient Experience Journal

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

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 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 …

Co-Production Of The Quality Of Patient-Centered Outcomes Research Partnerships Instrument For People With Mental Health Conditions, Karen L. Fortuna, Amanda Myers, Jessica Brooks, Caroline Collins-Pisano, Skyla Marceau, Sarah Pratt, Kathy Lyons, Robert Walker, Shavon Thompson, Kaycie Greene, Willie Pringle, Katina Carter

Patient Experience Journal

Mounting scientific evidence over the past decades in the field of psychiatry has shown community engagement in research produces more relevant research, increased uptake of research findings, and better clinical outcomes. Despite the need for the integration of community engagement methodologies into the scientific method, doctoral and master's level competencies in the field of psychiatry commonly do not include dedicated training or coursework on community engagement methodologies. Without appropriate training or research experience, attempts to facilitate community engagement are often ineffective and burdensome and leave stakeholders feeling disenfranchised. The goal of this study was to co-produce an instrument designed to …

Partnering With Patients To Design A Prehabilitation Program For Optimizing The Patient Experience Through General Surgery, Jacqueline Francis-Coad, Dale Edgar, Caroline E. Bulsara, Alix Barrett-Lennard, Kristine Owen, David Fletcher, Fiona Wood, Anne-Marie Hill

Patient Experience Journal

The objective of this study was to explore patients’ experiences when preparing for and undergoing general surgery at a large tertiary hospital. Findings aimed to inform the development of a prehabilitation program to empower patients to optimize their recovery and enhance their experience of general surgery. A qualitative exploratory research approach was utilized. Patients (>18 years) attending for elective general surgery between May and July 2018 were invited to participate. Four focus groups (n=18) and an interview were conducted to reach saturation. Deductive content analysis was used to map responses against theoretical determinants of health behavior change. Patients described …

The Experiences Of Rural British Columbians Accessing Surgical And Obstetrical Care, Aria Jazdarehee, Anshu Parajulee, Jude Kornelsen

Patient Experience Journal

The attrition of small volume surgical and maternity services in rural Canada over the past three decades has made access to these services especially challenging for rural citizens. While many of these closures have occurred as consequences of regionalization, a strategy to regionally centralize healthcare services, many studies investigating outcomes of regionalization have focused on costs and medical endpoints rather than the direct experiences of the rural patients affected. In this study, we aimed to understand and document the experiences of rural residents accessing procedural and maternity care both locally and away from home. This study is part of a …

Needle Phobia: How To Improve The Child's Experience During Blood Drawing, Maria D. Navarro, Helena Illera, Bonaventura Ruíz, Montserrat Naudó, Núria Serrallonga, Sonia Tordera, David Kornmehl, Lola Crevillén, Ana Bosque, David Nadal, Mercedes Jabalera

Patient Experience Journal

Pediatric diseases, pain and hospitalization have an important impact on children and their families. This is especially significant when considering common invasive procedures, such as blood drawing. The objectives of the study were to assess the experience of children and families during the blood drawing procedure and suggest methods for improvement. The study was conducted in a children’s hospital in Barcelona, Spain, between 2018 and 2020. A mix-method design or combination of qualitative and quantitative methodologies was developed. We carried out a search of the literature, a design thinking approach, and a survey. Results from the qualitative approach identified areas …

Surveying Pediatric Caregivers’ Readiness For Dyad Isolation In The Hospital During Covid-19, Shanqing Yin, Mei Zi Quek, Celestine Mun Ting Yeo, Sylvia Mun, Ronghui Li, Derrick Chan

Patient Experience Journal

The onset of any emerging outbreak is stressful for everyone. Singapore was one of many countries affected early by COVID-19. In response, many precautionary measures were quickly initiated, including the isolation of suspected COVID-19 pediatric cases, and their caregivers were isolated together with their hospitalized children as a result. Caregivers play an important role in facilitating their child’s health in the hospital. Rooming in with their children during hospitalization promotes the benefits of parental presence and reduces separation effects. However, sudden admission with strict movement restrictions poses stress to these caregivers too. This study ran a 3-part paper-based survey to …

Safety Participation At The Direct Care Level: Results Of A Patient Questionnaire, Lenora Duhn, Nathaniel Gumapac, Jennifer Medves

Patient Experience Journal

Understanding how patients can be engaged in safety-related activities at the direct care level is of current relevance given global efforts to reduce harm in hospitals. As part of a multiphase study, including a descriptive, exploratory qualitative study (Duhn & Medves, 2018), patients were asked to respond to a brief questionnaire to quantify how they viewed their patient-reported safety participation behaviours while in hospital. This paper is a summary of those responses. The 8-item questionnaire was, in part, used to help address a secondary research question of the larger qualitative study, specifically: What behaviours do patients report in promoting their …

An Evidence-Based Tool (Pe For Ps) For Healthcare Managers To Assess Patient Engagement For Patient Safety In Healthcare Organizations, Ursulla Aho-Glele, Marie-Pascale Pomey, Maiana Regina Gomes De Sousa, Khayreddine Bouabida

Patient Experience Journal

In 1999, the Institute of Medicine had already warned that medical errors caused between 44,000 and 98,000 avoidable deaths per year in the United States. A similar situation was subsequently in 2000, documented in Canadian hospitals. According to a Canadian Patient Safety Institute report (2016), incidents in both acute and home care settings resulted in additional costs of $2.75 billion each year. Research suggests that Patient Engagement (PE) for Patient Safety (PS) can help address this issue. However, the use of PE in various strategies to promote PS has yet to be fully integrated across healthcare systems in OECD countries. …

No Visitors Allowed: How Health Systems Can Better Engage Patients’ Families During A Pandemic, Jennifer Schlimgen, Amy Frye

Patient Experience Journal

The ravages of COVID -19 and the no visitor policies that accompany it have forged a tectonic shift in the patient and family experience. This hit home for me with a recent family member health event and hospitalization, leading me to think “we HAVE to do better!” Why should hospitals and health systems care about family involvement during COVID-19?

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.
• Access other resources related to this lens.

The Paradoxical Injunctions Of Partnership In Care: Patient Engagement And Partnership Between Issues And Challenges, Khayreddine Bouabida, Marie-Pascale Pomey, Genevieve Cyr, Ursulla Aho-Glele, Breitner Gomes Chaves

Patient Experience Journal

Partnership in care and patient engagement is an expanding approach and tremendously promising for improving the quality of healthcare services. However, the approach could be subject to many issues and challenges of various kinds. In this paper, we develop a reflection of the challenges and issues that the approach of patient engagement and partnership in care is facing. After a brief presentation of certain key concepts of partnership in care and patient engagement, we discuss in this paper the most worthy of consideration issues that we identified and classified as follows: Political, Financial, Organizational, Clinical, and Ethical Issues. We then …

A Systems Thinking Framework To Improve Care Of The Terminally Ill: An Australian Case Study, Elizabeth Summerfield

Patient Experience Journal

This paper argues the value of systems thinking to patients, family members and medical practitioners in end-of-life care, particularly as a mechanism for considering when palliative care should be introduced as preferred treatment. It applies a well-established set of tenets in systems thinking retrospectively to a case study of patient care in Australia. This highlights how and where different decisions might have been made, based on a holistic consideration of the patient’s best interests. The case is written from the perspective of a family caregiver. It argues that early, deliberate conversation, framed by systems thinking tenets, can support the call …

Panda: A Case-Study Examining A Successful Audiology And Otology Patient And Public Involvement And Engagement Research Group, Laura Boddy, Richard Allen, Rosalyn Parker, Margaret E. O'Hara, Amy V. Gosling

Patient Experience Journal

There has been increasing involvement of patients and members of the public in research; however, case studies describing patient research groups with hearing loss are non-existent. Such case studies will be valuable, enabling evidence-based dialogue and promoting best practice in the engagement of patients, the public and researchers. This paper aims to discuss this practice. The absence of such dialogue may hinder initial efforts by researchers to realise the potential of Patient and Public Involvement. The objective of this study was to set up and run a patient and public involvement and engagement group in audiology research, use the lessons …

Addressing Social Disconnection Among Frequent Users Of Community Hospital Emergency Departments: A Statewide Implementation Evaluation, A. Rani Elwy, Elisa Koppelman, Victoria Parker, Chris Louis

Patient Experience Journal

We conducted a qualitative exploration and implementation evaluation of a Massachusetts policy initiative, the Community Hospital Acceleration, Revitalization, and Transformation (CHART) investment program, to examine how CHART innovations aimed at reducing unnecessary emergency department (ED) visits also addressed patients’ social disconnection problems according to a social connection framework (structural, functional, quality or multilevel). We performed interviews with 236 stakeholders (hospital managers, CHART providers, staff, and community partners) one-year post CHART implementation. Interviews were analyzed using a directed content analysis approach. Data were then mapped to levels of the social connection framework. Our results support that social disconnection, described as “loneliness” …