Patient Experience Journal (PXJ, The Beryl Institute)
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Co-production development of a decision support tool for peers and service users to choose technologies to support recovery
Get PDFPeer support specialists (i.e., lay interventionists representing one of the fastest-growing mental health workforce) are increasingly using technologies to support individuals with mental health challenges between clinical encounters. The use of technology by peers has been significantly increased During COVID-19. Despite the wide array of technologies available, there is no framework designed specifically for peer support specialists and service users to select technologies to support their personal recovery. The objective of the study was to develop a Decision-Support Tool for Peer Support Specialists and Service Users to facilitate shared decision-making when choosing technologies to support personal recovery. The study used an iterative co-production process, including item formulation and a series of group cognitive interviews with peer support specialists and service users (n=9; n=9, n=4). The total sample included 22 participants: peer support specialists (n=18, 81.8%) and service users (n=4, 18.2%). The final version of the Decision-Support Tool for Peer Support Specialists and Service Users (D-SPSS), includes 8 domains: (1) privacy and security; (2) cost; (3) usability; (4) accessibility; (5) inclusion and equity; (6) recovery principles; (7) personalized for service users’ needs; and (8) device set-up. Our study found that involving peer support specialists and service users in the design and co-production phase of a decision-support tool is feasible and has the potential to empower both peer support specialists and service users, and potentially increase engagement in the use of technologies that support individuals’ recovery from traditional clinical encounters.
Experience Framework
This article is associated with the Innovation & Technology 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
The effect of service excellence training: Examining providers\u27 patient experience scores
Get PDFPrevious research and applied work has shown that communication-based training has the potential to impact important outcomes for healthcare organizations. Our institution developed and deployed Service Excellence, a communications-focused training, in our large academic cancer-focused healthcare system. In this study, we investigated whether patient experience improved for those with care providers who completed Service Excellence, as measured by Press Ganey Provider Experience surveys, and whether the effect of Service Excellence training depends on employee engagement. Results indicated that participating in Service Excellence training positively impacts perceptions of patient experience, and that the impact of the training is stronger for providers with low engagement as compared to providers with high engagement. Findings suggest that communications-based training can be an effective mitigation strategy to assist even those low engaged physicians with displaying the expected behaviors for positive patient interactions. Implications for healthcare organizations are discussed, including the rationale for motivating providers to attend such training.
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
Motivations, experiences, and aspirations in patient engagement of people living with metastatic cancer
Get PDFThe objective of this patient-led study was to explore the motivations, experiences, and aspirations of people living with metastatic cancer who volunteer in patient engagement. This qualitative study filled a gap in lived experience research about patient engagement by focusing on an oft ignored population – those living with metastatic cancer. We used a patient-oriented research approach throughout the research cycle from proposal development to data analysis. A Patient Partner helped develop the project proposal. We selected a qualitative descriptive design to best align with our patient-oriented research goals. The first author, a peer researcher with metastatic cancer, conducted semi-structured interviews with seven participants. The interview questions focused on why patients with metastatic cancer volunteered in patient engagement, the experiences and challenges they encountered as volunteers and what they wanted to achieve in their participation. The interviews were transcribed by the interviewer with personal details redacted for confidentiality. Optional member-checking occurred with three participants. After the interviews, two participants joined the research team to participate in data analysis and interpretation of the findings. Thematic analysis was used to identify common themes in the transcribed and redacted participant interviews. The resulting themes were contributing fully, creating a better cancer experience, making meaningful connections, giving back, and struggling with the system. These findings yielded theme-based advice for both patient partners and administrators for creating meaningful patient engagement. Further research led by patient partners could contribute to a more empowered patient engagement program.
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 Right PREMTM: Rasch analysis of a new patient reported experience measure for use by older people in hospital
Get PDFHealthcare 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 PREMTM 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 rights of older people in the hospital setting. Data were collected from older people who were current hospital inpatients of medical wards in four South Australian metropolitan hospitals. The Rasch model was used to assess the psychometric properties of the patient version of The Right PREMTM. The analysis was performed using the Winsteps® software program. Two hundred older patients completed the 50-item questionnaire. During the process of analysis, four items were removed as they did not fit the model and a further 11 items were removed due to high residual correlations. The final 23 items had a Person Separation Index of 2.23, a Person Separation Reliability Coefficient 0.83, an Item Separation Index of 7.70 and an Item Separation Reliability Coefficient of 0.98. Rasch analysis of the patient version of The Right PREMTM, based on a robust sample, demonstrated this new instrument is psychometrically sound and warrants ongoing development.
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
A call to action for human experience
Get PDFAs we open the 8th volume of Patient Experience Journal (PXJ), we all stand in a world much different than we did just a year ago. A year ago we were in the height of crisis, facing unknowns and uncertainty. We didn’t know if we were tackling an issue that was weeks, months or years in front of us. We were truly not even sure what tomorrow might bring. As I shared in opening Volume 7, we were already experiencing something special in the midst of real tragedy. We were seeing light peeking through heavy clouds. I opened that issue sharing, “At the heart of healthcare, we are human beings caring for human beings, [and] at the heart of the actions and efforts of so many at this time of crisis, we find the true essence of the humanness of healthcare. Yes, the clinical excellence at healthcare’s roots will ensure we save lives, but the efforts we are seeing to elevate the human experience now will ensure we honor those lives through and beyond this crisis as well.” While this crisis challenged us in ways we have never seen, it equally highlighted the realities we knew already existed but had yet to fully address. The opportunity this reveals provides a significant moment of choice: do we perpetuate our efforts of the past or do we bend the arc for a new future? We are at a unique moment for our community, for our world…one we must not miss. Please join us in transforming the human experience by sharing your ideas via PXJ, taking action in your organizations, working to impact the communities in which you live and work, by signing and acting on the Declaration for Human Experience. That is the least we can do for one another in an industry, and I dare say a world, where we must forever be human beings caring for human beings. We are the human experience, and now is the time to act
The paradoxical injunctions of partnership in care: Patient engagement and partnership between issues and challenges
Get PDFPartnership 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 conclude the paper with certain recommendations that may help to better deal with those challenges and issues and alleviate their impacts.
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
An evaluation of the effectiveness of a unique patient experience response program that provided virtual, visual and emotional connectivity to patients and families during the COVID-19 crisis
Get PDFIn April 2020, the New York State Department of Health issued guidelines regarding suspension of hospital visitation due to coronavirus disease 2019 to protect staff and patients and prevent spread of the virus. Recognizing that patients would need extraordinary emotional support as they faced this frightening journey, two hospitals from a health system in the national epicenter provided avenues to bridge gaps in connectedness and communication. Our program provided virtual, visual and emotional connectivity by utilizing repurposed staff to serve as patient experience ambassadors. This program reduced the burden on clinical staff while preventing furlough. A descriptive correlational study was conducted that measured satisfaction of the program and connection provided. Subjects recruited for the study included patients and family members who used virtual platforms. Variables were measured using a Likert – type scale ranging from excellent to poor. Relationships between the variables were examined. This study revealed that participants were satisfied that the program improved connectedness; provided an adequate alternative to limited hospital visitation; provided emotional support and peace and closure in end-of-life situations. Respondents were satisfied with the patient experience ambassadors and would recommend the program. The overall rating was “good” (Mean = 3.267 SD 0.1039 Range 3.12 – 3.37) indicating a moderate to high degree of satisfaction. There were statistically significant differences in responses for connectedness, adequate alternative and rating in end-of-life visits versus others. There were no significant differences by hospital. The virtual communication platforms were successful in providing emotional support and bridging the gap in communication between patients and their loved ones.
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 association between an established Chief Experience Officer role and hospital patient experience scores
Get PDFThe healthcare industry is currently reacting to multiple stakeholders demanding improvements to the patient experience. Some healthcare organizations are implementing new management structures, i.e., the role of Chief Experience Officer (CXO). This study statistically reviewed descriptors associated with hospitals that have and have not created and filled the role of CXO and, more importantly, measured the association between the CXO role and results of patients’ perceptions of their experience of care as measured by publicly reported Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) results. This study was conducted utilizing data gather on hospitals in three states, California, Florida, and New York. The results of the study yield insight into the organization characteristics of hospitals and the market factors associated with those hospitals that have filled the CXO role. Hospitals with a formal CXO role are larger, more likely to be for profit, and operate in metro areas of these states with higher per capita income. In addition, hospitals that have a formal CXO role are also more likely to have higher HCAHPS scores as determined by the patient recommendation question as well as the hospital overall rating question included in the HCAHPS survey.
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
Co-production of the quality of patient-centered outcomes research partnerships instrument for people with mental health conditions
Get PDFMounting 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\u27s 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 improve the quality of community engagement research practices by measuring the degree to which researchers have partnered with psychiatric patient stakeholders. The development of the Quality of Patient-Centered Outcomes Research Partnerships Instrument included an iterative co-production process with psychiatric patient stakeholders and scientists, including item formulation, followed by two phases of cognitive interviews with psychiatric patient stakeholders to assess and refine instrument items. A pilot study was conducted to assess acceptability and feasibility. The pilot study of the Patient-Centered Outcomes Research Partnerships Instrument suggested feasibility and acceptability among psychiatric patient stakeholders. The Quality of Patient-Centered Outcomes Research Partnerships Instrument may be a valuable tool to enhance the quality of community engagement research practices within the field of psychiatry.
Experience Framework
This article is associated with the Innovation & Technology 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
Building patient participation in quality of care through the healthcare stories project: A demonstration program in New York State HIV clinics
Get PDFThere 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 of a coproduced healthcare system. After reviewing HCSP and its rollout in New York HIV outpatient settings, we describe a qualitative process evaluation, consisting of interviews at two time points with implementing organizations (N=12, 11). Each activity offered an opportunity to share ideas and experiences of quality of care, generating concrete improvement project ideas. Activities strengthened patient involvement by engaging consumer advisory boards, and staff not traditionally involved in quality. While designed to be implemented with HIV patients, organizations implemented Activity Two and Three with broader populations. Organizations had the hardest time implementing Activity Three that focused on the coproduction concept, but they none the less applied and strengthened coproduced healthcare during Activities One and Two. Overall, HCSP is a promising model to advance patient-centered and patient-partnered quality of care, better understanding patient experiences and acting with patients to develop practical improvements and a more coproduced healthcare system.
Experience Framework
This article is associated with the Quality & Clinical Excellence 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