Patient Experience Journal (PXJ, The Beryl Institute)
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An evidence-based tool (PE for PS) for healthcare managers to assess patient engagement for patient safety in healthcare organizations
Get PDFIn 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. The aim of this study was to develop a tool for managers to assess PE strategies implemented at a health system level to enhance PS. Developing the tool involved 3 phases: (1) creating a framework; (2) building a first version of the tool; (3) validating the tool by an expert committee of PS and PE managers. The final tool consists of 81 questions, divided into four sections: (1) describing the healthcare organization (n=14); (2) gathering general information on PE strategies (n=15); (3) assessing different PE strategies for PS (n=49); and (4) describing the respondent’s involvement in PS committees (n=3). The tool is currently being used (by healthcare professionals working in Risk Management (RM) or PS, or, by task groups that include patients) in a research study in Canada and France, to assist healthcare managers in monitoring the evolution of PE for PS at a system level.
Experience Framework
This article is associated with the Policy & Measurement 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
Moving from talk to action: A commitment to ensuring equity must ground our efforts to transform the human experience
Get PDFWhen we first introduced the call for submissions for this special issue last August, we were still churning in the first wave of the COVID pandemic. Just three to four months from the start of an unending rash of unexpected and harsh realities that we were faced with in healthcare and in society at large, we too found that the moment was revealing all the weaknesses and wounds that had existed in the foundations of the healthcare system from well before the pandemic hit. Our own research at The Beryl Institute in 2020 reinforced a quiet reality: that people do experience discrimination in healthcare. In fact, 35% of Black Americans reported experiencing some sort of discrimination often or sometimes,1 and this unquestionably has an impact on their care. The challenges that healthcare has long faced in ensuring equitable access, care, treatment and outcomes were only further laid bare by the crisis. And there is still much work to do. The road that led to this Special Issue reveal that truth and the articles shared on these pages confirm it. But they too show us seeds of possibility, that when we focus on what is right for all who healthcare aspires to serve, then we can truly achieve the greatest in human experience for all. And that is exactly what every person ultimately deserves
A patient’s narrative of engaging HIV care: Lessons learned to harness resources and improve access to care
Get PDFIn Canada and the USA, about 30% of people with HIV are uninsured or not covered by government-subsidized health insurance. This paper presents a patient’s narrative of his experience being diagnosed with HIV and accessing care in the midst of his process of immigrating to and studying in Canada. The narrative explores how Vincent Croft (pseudonym) has coped with the chronicity of the infection and its associated social stigma, and the temporary solutions he found to access treatment. Engaging with healthcare providers, researchers, and other people living with HIV has allowed Croft to share his experience, including the barriers he encountered and the solutions he envisioned or attempted, resulting in self-empowerment and reinterpretations of Croft’s own trajectory. Patrick Keeler, a community-based intervener, reflects on Croft’s narrative as symptomatic of systemic issues in access to care of people living with HIV in Canada. He also illustrates how the experiential knowledge of people with similar lived experiences can trigger simple, innovative, and cost-efficient initiatives with Le Cercle Orange, which connects and mobilizes existing resources for people with HIV with no or limited access to care and treatment.
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
Reexamining “Defining Patient Experience”: The human experience in healthcare
Get PDFIn 2014, the authors came together with the explicit purpose of understanding how people were defining patient experience.1 Our broad review and analysis of the literature led us to a few critical points. One, as our review showed, there was an absence of a commonly used definition around patient experience in healthcare. Two, while consistency in the use of one definition was not revealed, there was great alignment around central components seen as critical to patient experience. Three, we highlighted the recurrence of key concepts from the literature that are also found in the definition offered by The Beryl Institute that include: ‘sum of all interactions,’ ‘the influence of organizational culture,’ ‘patient perceptions,’ and the importance of considering experiences ‘across the continuum of care.’ While this initial inquiry took place seven years ago, we would suggest that these core definitional concepts are no less relevant today and, in fact, may have grown in significance, as those in healthcare have come to better understand the scope and scale of experience. Hence, the purpose of this paper is to assess how the definition has evolved to encompass novel and timely viewpoints that complement the original definition and understand how - and in what ways - the definition has advanced. The definition of patient experience was a significant milestone. It provided simple language for the truly complex nature of what patient experience is and has ultimately served as a foundation for framing the human experience in healthcare. The human experience in healthcare integrates the sum of all interactions, every encounter among patients, families and care partners and the healthcare workforce. It is driven by the culture of healthcare organizations and systems that work tirelessly to support a healthcare ecosystem that operates within the breadth of the care continuum into the communities they serve and the ever-changing environmental landscapes in which they are situated. The human experience in healthcare ultimately is the fruit born from the core of patient experience itself.
Experience Framework
This article is associated with the Culture & Leadership 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 len
Safety participation at the direct care level: Results of a patient questionnaire
Get PDFUnderstanding 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 safety while receiving care in hospital? Patients completed the questionnaire at the end of the face-to-face in-hospital interviews. Twenty-eight adult inpatients completed the questionnaire. Fifteen participants indicated that they ‘always’ or ‘usually’ checked their hospital medications; this was the second lowest rated activity. Most participants (n=20) believed they could rely on their knowledge and alertness to protect them from health-care error. Seventeen participants were in the high participation category. Given the prevalence of medication errors, patient involvement warrants further examination, including system supports to increase feasibility. Overall, a standardized, valid and reliable patient engagement in safety measure for the direct care level is required.
Experience Framework
This article is associated with the Policy & Measurement 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
Using a multidisciplinary data approach to operationalize an experience framework
Get PDFLike many healthcare organizations, Baylor Scott & White Health (BSWH) is awash with data. Often, this data is used in siloed departments to monitor safety and quality, make local business decisions, and motivate staff to improve processes to achieve sustained excellence and market share. As margins get thinner and competition from various disrupters increases, organizations have tried to improve the patient experience to remain viable as part of a calculated strategy. Nevertheless, these entities have struggled to focus limited resources for sustained improvement in patient experience. This article details how a large Texas-based healthcare system operationalized The Beryl Institute\u27s Experience Framework via a multidisciplinary data approach. Key gaps that negatively impact the patient experience were identified using 99 data elements from common, readily available sources. Demonstrating the interconnected nature of the data has proven to be essential in engaging leaders to view the patient experience as an essential component to providing quality care. This crucial support from senior leaders drives efforts to safety, quality, and experience. A plan for how this approach can be implemented in any organization is shared, along with a discussion on sustainability, the use of these tools in an organization\u27s improvement journey, and how it can help create higher-performing care teams. Limitations and future opportunities for enhancements to the approach are also provided.
Experience Framework
This article is associated with the Policy & Measurement 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
Development and reliability of a patient experience inventory tool for hospitals
Get PDFThis study explores the development and reliability testing of the newly developed Patient Experience Inventory for Hospitals (PXI-H). Created as an organizational self-assessment patient experience tool, it guides healthcare leaders in evaluating attitudes and behaviors as well as structures and programs impacting patient experience within a hospital setting. The PXI-H is organized within four pillars: Leadership, Education and Development, Data and Analytics and Patient-and-Family Centeredness, which were determined to be internally consistent based on examining coefficient alphas and the item-total correlations. Principal component analysis also determined items with highest loadings aligned onto the pillars in which there were assigned, confirming the hypothesized factor structure.
Experience Framework
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens
Treading water: Coping with uncertainty during a novel pandemic
Get PDFThe abruptness with which the COVID-19 pandemic has changed the delivery of healthcare will have a lasting effect on patients and families of intensive care unit survivors. Using the best science and epidemiology healthcare systems developed protocols and policies to implement the highest level of care but mitigate disease spread. Out of these initiatives the “no visitor” policy was born. The impact of COVID-19 causing florid respiratory failure immediately derailed the lives of a happily retired couple. While on mechanical ventilation for sixteen days, Betty was unable to connect with her husband of over 40 years. In that time, the critical care team became familiar with techniques to treat COVID patients all the while understanding that self-care will be vital in preventing burnout during this pandemic. The balance between reducing the spread of a pathogen and giving our patients and families a human connection will be an on-going challenge in the months ahead.
Experience Framework
This article is associated with the Staff & Provider Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens
Micro-volunteering at scale can help health systems respond to emergencies, such as the Covid-19 pandemic
Get PDFOne of the unprecedented challenges of the Covid-19 pandemic has been to support millions of clinically high-risk individuals who were advised to self-isolate for long periods to reduce the likelihood of infection. The NHS in England issued a mass call for volunteers in March 2020 to help support people who were shielding or vulnerable for other reasons during the lockdown. Three quarters of a million people came forward to aid the health at home experience for these vulnerable individuals by providing friendly telephone calls, help with shopping or collection of medicines or transport to essential hospital appointments. Hospitals also used to scheme to replace older volunteers who had been stood down after Covid-19 risk assessments and to help patients avoid unnecessary trips into their services. As we gained experience of running the scheme, additional tasks were added, such as support for Covid-19 research trials.
The approach to ‘micro-volunteering’ at scale has been hugely beneficial and has significantly increased the number and diversity of volunteers supporting the health system. This article describes the scheme and provides an account of achievements over the first wave of Covid-19 in England.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens
Special Issue – July 2021 The Impact of Inequity & Health Disparities on the Human Experience
Get PDFPatient Experience Journal (PXJ) is excited to announce the call for submissions for its July 2021 special issue on the impact of racial inequality, health disparities, and discrimination on the human experience. The world now finds itself in the grips of a global pandemic that is taking its toll on communities socially and economically, placing strain on healthcare workers and revealing the very systemic weaknesses and inherent biases that have been resting just beneath the surface of our society for years. The challenge of disparity and inequity is not unique to healthcare, but in the era of COVID-19, what many knew to be true has been laid bare for all to see. The July 2020 issue of PX Pulse (https://www.theberylinstitute.org/PXPULSE) further revealed a great imbalance in how experience is perceived dependent on race and gender and highlighted the real experiences of discrimination that people are facing in healthcare today. This special issue will explore the impact of these fundamental challenges on our ability to deliver on experience overall. The issue will look for pieces that address evidence-based efforts at measuring the impact of inequity and disparities, reveal practices that are focused on addressing the challenges inequity and disparity create and share personal stories of the impact these issues have had. Through this special issue, PXJ looks to not only build a foundational collection of knowledge and information that will continue to push the conversation on experience forward but also create a platform for action in addressing this issue that weighs heavily on the heart of healthcare