Health Services Research Commons^™

Delineating And Operationalizing The Definition Of Patient-Oriented Research: A Modified E-Delphi Study, Navdeep Kaur, Pierre Pluye

Journal of Patient-Centered Research and Reviews

Purpose: The importance of patient-oriented research (POR) has been recognized by the scientific community and governmental agencies, and its development is exponential across most health-related disciplines. The current Canadian Institutes of Health Research (CIHR) definition of POR is overly broad and hinders the reliable selection of POR-related publications from bibliographic databases. The present study was aimed to adapt CIHR’s definition of POR into an operational definition that can be used by stakeholders for selecting POR publications.

Methods: Eighteen POR experts in Québec, Canada, were invited to participate in a modified e-Delphi study. Two rounds of Delphi surveys were undertaken to …

Tell Me More: Promoting Compassionate Patient Care Through Conversations With Medical Students, Danielle Qing, Anjali Narayan, Kristin Reese, Sarah Hartman, Taranjeet Ahuja, Alice Fornari

Patient Experience Journal

Tell Me More^® (TMM) is a medical student driven project that represents a movement amongst the rising generation of physicians to practice humanistic, patient-centered medicine through a collaborative approach. Students interviewed patients to create individualized posters designed to build rapport and trust between patients and clinicians, remind patients of their special strengths by highlighting their unique interests and qualities, and encourage more personal and compassionate patient-clinician interactions in order to enhance the patient experience. Students asked each patient three questions: 1. “How would your friends describe you?” 2. “What are your strengths?” 3. “What has been most meaningful to …

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, …

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, …

Standardising The Collection Of Patient-Reported Experience Measures To Facilitate Benchmarking And Drive Service Improvement, Kathleen L. Withers, Sarah Puntoni, Susan O'Connell, Robert I. Palmer, Grace Carolan-Rees

Patient Experience Journal

Patient experience teams in NHS Wales’ Health Boards and Trusts are working across the country to collect patient experience feedback from members of the public who access health care services. Although this work is advanced in many areas, there is currently no way of benchmarking across organisations, reducing opportunities for shared learning. We aimed to work with patients and colleagues across Wales to agree a set of universal Patient Reported Experience Measures (PREMs) questions. Working with patient experience teams, patient groups and Welsh Government, the NHS Wales Patient Reported Outcome Measures (PROMs), Patient Reported Experience Measures (PREMs) and Effectiveness Programme …

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 …

Impact Of A Boot Camp Translation Intervention On Self-Management Support In Primary Care, Donald E. Nease Jr., Jeanette M. Daly, L. Miriam Dickinson, Douglas H. Fernald, David L. Hahn, Barcey T. Levy, Leann C. Michaels, Matthew J. Simpson, John M. Westfall, Lyle J. Fagnan

Journal of Patient-Centered Research and Reviews

Purpose: Self-management support (SMS) is a pillar of the well-established chronic care model and a key component of improving outcomes for patients with chronic illnesses. The Implementing Networks’ Self-management Tools Through Engaging Patients and Practices (INSTTEPP) trial sought to determine whether a boot camp translation process could assist small to medium-sized primary care practices with care managers implement SMS tools.

Methods: INSTTEPP used a stepped-wedge design across 16 practices from 4 practice-based research networks over 12 months. Each network completed a 2-month boot camp translation for creating SMS tools with 16 participants (2 patients, a clinician, and a care manager …

Patient Self-Management: Tools And Barriers, Dennis J. Baumgardner

Journal of Patient-Centered Research and Reviews

In his issue introduction, the editor-in-chief of the Journal of Patient-Centered Research and Reviews comments on the theme of patient self-management of chronic diseases and the related articles published therein. Illnesses such as cardiovascular disease, diabetes, epilepsy, arthritis, asthma, and obesity often require patients to administer their own medication daily or adhere to strict dietary restrictions. Progress is being made on the process of implementation and evaluation of patient self-management tools in primary care practices. Barriers to self-management tool implementations in clinics, as well as their use by individual patients, must be understood and addressed.

Improving Health And Well-Being: Connecting Research And Practice. The 24th Annual Conference Of The Health Care Systems Research Network, Karen L. Margolis, Nico Pronk, Jane E. Duncan, Sarah M. Greene

Journal of Patient-Centered Research and Reviews

The 24th annual conference of the Health Care Systems Research Network (HCSRN, formerly the HMO Research Network), held April 11–13, 2018, in Minneapolis, Minnesota, attracted 357 attendees. The HCSRN is a consortium of 18 community-based research organizations embedded in or affiliated with large health care delivery systems. Its annual research conference, held since 1994, is a unique venue that brings diverse stakeholders (eg, research teams, clinicians, patients, funders) together to explore a range of health research topics and scientific findings, with a unifying goal of connecting applied research to real-world care delivery for the betterment of individual and community health. …

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 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 …

Nursing Transfer Of Accountability At The Bedside: Partnering With Patients To Pilot A New Initiative In Ontario Community Hospitals, Kristina Ba Miller, Aden Hamza, Kateryna Metersky, Dianne M. Gaffney

Patient Experience Journal

The transfer of accountability (TOA) for a patient from one nurse to another at change of shift is an important opportunity to exchange essential patient care information, as well as to enhance the safety and quality of patient care. This study was undertaken to explore nurses’, patients’ and family members’ perceptions associated with the implementation of bedside nurse to nurse TOA. Focus groups were conducted pre-implementation (two with nurses and two with patients and family members) and post-implementation (six with nurses and two with patients and family members). The focus groups were audio-recorded, transcribed and analysed using directed content analysis. …

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 …

“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 …

Exploratory Pilot Testing Of The Psychometric Properties Of The Person Engagement Index Instrument Among Older, Community-Dwelling Adults, Ellen Swartwout, Taya Irizarry, Annette Devito Dabbs, Scott Barnett

Patient Experience Journal

The objective of this paper was to evaluate the psychometric properties of the Person Engagement Index with community dwelling older adults and determine the factors that impact this population’s capacity to engage in healthcare. This non-experimental pilot evaluation of the psychometrics of the Person Engagement Index was performed in a convenience sample of 100 community-dwelling older adults. Exploratory factor analysis was conducted using dimension reduction to determine the underlying structure of a person’s capacity to engage in healthcare. Results indicated good internal consistency with Cronbach’s alpha=.882 for the overall scale. Exploratory factor analysis with varimax rotation was conducted resulting …

Patient Safety: Just Ask. Patients As Reporters Of Real-Time Safety Data; A Pilot Project To Improve Patient Safety In Secondary Care, Thomas A. Cairns Dr, Iain Mccallum Mr

Patient Experience Journal

The Berwick review into patient safety recommended ‘involving patients in the healthcare organisation and seeking out the patient voice as an essential asset to monitor safety.’ (1) However routine data collection from patients in our institution is retrospective and doesn't focus on safety. Our objective was to create a patient-centred mechanism to monitor patient-perceived safety concerns and provide immediate resolution of highlighted issues. A pragmatic 6-question questionnaire was developed containing 4 scored and 2 free text questions. This questionnaire was piloted and adjusted before being administered to all inpatients meeting the inclusion criteria in our institution on one day. Safety …

Accelerating Patient Experience Performance: Collaboration And Engagement As Drivers For Success, Sidney Klajner

Patient Experience Journal

The efforts at Albert Einstein Jewish Hospital in São Paulo, Brazil have been focused on principles of excellence for many years as realized in engagement in and commitment to some of the leading global healthcare practices over the last decade. In reinforcing a commitment to excellence and continuous improvement, the patient experience efforts at Einstein have evolved from an operating structure for patient experience efforts to a truly integrated program for action in address all elements in the organization impacting and ultimately driving patient experience outcomes. By grounded efforts in core evidence-based practice, while engaging the hearts and minds of …

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 …

A Trip To Healthcare, David E. Matz

Patient Experience Journal

This narrative shares how my experience with two colonoscopies and three surgeries in one year taught me that I am not so good at engaging in treatment decisions. I thought I was. This essay sets out where I made my mistakes, why I believe I made those mistakes, and how the hospitals, intentionally or not, made good decision-making harder. I offer two suggestions for enhancing the role of the patient in decision-making including 1) Every doctor in a diagnostic-decision-making interview should use the sentence “You have some choices here.” The doctor will have preferences, of course, but the patient needs …

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 …

Engaging Rural Residents In Patient-Centered Health Care Research, Michelle Levy, Cheryl Holmes, Amy Mendenhall, Whitney Grube

Patient Experience Journal

Patient engagement is increasingly recognized as a critical component in improving health care. Yet, there remains a gap in our understanding of the intricacies of rural patient engagement in health-related research. This article describes the process of engaging rural patients, caregivers and broader stakeholders to actively participate in an exploratory effort to understand rural perspectives around the patient-centered medical home model. Highlights of the project’s engagement activities demonstrate how giving voice to rural residents can have a significant impact. Lessons learned point to the importance of six factors for successful engagement of rural residents as partners in health care research: …

Evaluating Variables Of Patient Experience And The Correlation With Design, Dyutima Jha, Amy Keller Frye, Jennifer Schlimgen

Patient Experience Journal

The objective of this paper was to understand the variables of patient experience by analyzing recent and relevant evidence and to identify design solutions within the hospital environment that positively impact those variables. A systematic review of literature published from 2008-present was conducted to identify variables that contribute to patient experience benefits. Identified variables were documented and categorized into a design, organizational, and outcome variable matrix. Interviews were conducted with professionals from healthcare institutions, architecture firms and organizations committed to improving the patient experience. Data from healthcare facilities, with high patient experience scores, was also examined to derive effective design …

A Critical Discussion Of Patient Engagement In Research, Andrea Elaine Bombak, Heather M. Hanson

Journal of Patient-Centered Research and Reviews

Patients are increasingly expected to take a more involved role in research. Funding for some projects now requires incorporating patients’ viewpoints or involvement in research processes. While intended to achieve commendable goals, it is important to critically assess the means used to achieve these aims. Presently, there may be issues of valuing only certain epistemologies, failing to evaluate existing programs and their impacts, marginalizing less “engaged” patients, and promoting only tokenism. These are areas that require exploration and reflection before assuming that patient engagement approaches are sufficient or the only means of incorporating patient perspectives into research.

“What Matters To You?”: A Pilot Project For Implementing Patient-Centered Care, Anthony M. Digioia Md, Iii, Sarah B. Clayton, Michelle B. Giarrusso

Patient Experience Journal

This project was intended to enhance the delivery of patient-centered care by asking patients what matters to them before and after total joint replacement (TJR) surgery. In Phase I, pre-operatively, patients undergoing total joint replacement (TJR) surgery were asked, “What matters to you before surgery, during your hospital stay, and in the first 3 months following surgery?” and “What matters to you moving forward after you’ve recovered from your joint replacement?” Four weeks post-operatively they were asked, “Now that that you’ve been through the surgery and first 4 weeks of recovery, can you identify new concerns that you didn’t have …

Envisioning Mechanisms For Success: Evaluation Of Ebcd At Cheo, Kristina Rohde, Mireille Brosseau, Diane Gagnon, Jennifer Schellinck, Christine Kouri

Patient Experience Journal

To advance patient engagement (PE) and more comprehensively involve patients, families, and staff in quality improvement (QI) at the Children’s Hospital of Eastern Ontario (CHEO), the Experience Based Co-Design (EBCD) approach was piloted. Set against the backdrop of envisioning factors that would facilitate success, an evaluation was designed to assess five domains: strengthening of mutual understanding, collaboration, and partnerships between patients/families and staff; a greater involvement of patients, families, and staff in QI; satisfaction with the process; the ability of EBCD to generate clear and useful data to ascertain the patient/family and staff experience; and the ability of EBCD to …

Using Patient Value Statements To Develop A Culture Of Patient-Centred Care: A Case Study Of An Ontario, Canada Hospital, Erica Bridge, Madelyn P. Law, Miya Narushima

Patient Experience Journal

Patient-centred care (PCC) is not a new concept; however, in recent years it has garnered increasing attention in the research literature and clinical practice. PCC in clinical practice has been found to improve clinical outcomes, resource allocation, and the patient experience. In response to the need for PCC and quality in healthcare, the Ontario, Canada government developed the Excellent Care for All Act (ECFAA) in 2010. The ECFAA imposes six obligations to Ontario hospitals, one of which is developing and publishing a Patient Declaration of Values (PDoV). The purpose of this study was to explore how a leading patient-centred Ontario …

Showcasing Patient Experience And Engagement Best Practices Through An Innovative Forum Celebrating Patients, Families, And Multidisciplinary Care Teams, Alison S. Tothy Md, Sunitha K. Sastry, Andres Valencia, Mary Kate Springman, Susan Murphy

Patient Experience Journal

A platform was designed for interdisciplinary teams to learn from colleagues, patients, and their families, about what creates and sustains positive, lasting impressions from their care team. A forum focused on positive experiences designed to highlight the relationships between patients and care teams was utilized. A Best Practices Forum was designed to share methods for generating positive patient experiences across the institution. These quarterly conferences featured patient stories and highlighted best practices such as empathic communications, collaboration, and teamwork used by caregivers throughout the institution. The patient experience team invited various well-performing departments to share best practices, as well as …