Patient Experience Journal (PXJ, The Beryl Institute)
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Reframing the conversation on patient experience: Three considerations
Get PDFIn 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 touching on a broad range of topics, but yet in their distinction, find a powerful commonality, a commitment to the humanity of healthcare. If we reframe the conversation on patient experience to one that is about all we aspire to achieve, about how every role matters, every voice contributes, every perspective brings value and seasoning to an ever expanding mix of possibility, than what we can do in healthcare is boundless. A conversation on experience is not tangential to this opportunity we face, rather it rest squarely at its core and it is incumbent on each and every one of us to contribute. That may be our greatest opportunity in a global healthcare system where access and equity, quality and safety, empathy and compassion and health and well-being are not just what we do as work, but the fundamental reality of all do as human beings caring for human beings.
Experience Framework
This article is associated with the Culture & Leadership 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 len
Assessing capacity to engage in healthcare to improve the patient experience through health information technology
Get PDFPatient engagement is viewed as a means to improve patient care, increase population health, and decrease health care costs. Efforts to improve engagement are prevalent across healthcare, particularly through health information technology (HIT) tools such as patient portals. However, we know that not all patients have the same ability to engage, leading to potential disparities. We present the Engagement Capacity Framework and suggest that examining capacity for engagement would improve our ability to address currently unmeasured factors that facilitate engagement. The objective was to examine factors that influence an individual’s capacity for engagement through HIT. We administered a paper survey to patients seen for care in a Family Medicine Clinic at a large Academic Medical Center, measuring potential components of the Engagement Capacity Framework. 142 patients completed the survey. Respondents reported high self-efficacy, high resilience, and good or better quality of life. Most were willing to use the Internet. Almost 30% of respondents did not use a patient portal and 37% of these respondents were very or somewhat unwilling to use a portal. We observed significant positive correlations (p \u3e 0.05) between portal use and searching for health information online, using email and owning technology. For those who did not use a portal we asked about willingness to use a portal; portal willingness was positively correlated with willingness to use the Internet (p \u3c 0.01). Our findings emphasize the importance of assessing capacity for engagement in order to target interventions to those most in need, connecting them to necessary resources to allow more full participation in their care.
Experience Framework
This article is associated with the Innovation & Technology 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 len
“Can I still get a tattoo?” Patients’ experiences across the clinical trajectory for metastatic melanoma: a dynamic narrative model of patient journey
Get PDFAdvanced 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 metastases are not a matter of ‘if’ but ‘when’. This model of the patient journey points to a need for longitudinal, person-centered services to support the growing population of people with melanoma
Acquiring knowledge prior to diagnosis: A grounded theory of patients’ experiences
Get PDFThis research aimed to explore and explain how people make sense of long-term health conditions. Using purposive and theoretical sampling within a grounded theory design, experiences of thrombophilia and asthma were explored. The article focuses on information gained by patients before diagnosis and how this contributes to their understanding. The study adopted a constructivist grounded theory approach, generating a theory of how individuals adapt to their long-term condition. Ethical approval was sought from the NHS and the institution at which the research was conducted. Data were collected through semi-structured interviews, with sixteen participants who had provided informed consent. Individuals with long-term conditions frequently gain knowledge about their condition before diagnosis, through clinical encounters, from friends, family or acquaintances, by linking specific symptoms to a particular condition, or through experiencing ongoing symptoms. Knowledge gained before the point of diagnosis enables individuals to become informed about their condition. Some of this knowledge may be accurate, some may be specific to them as individuals and some of it may be misunderstood or coincidentally linked to their condition. However, patients will use and rely on this knowledge, particularly in the absence of evidence to the contrary. Healthcare professionals may wish to talk through patients’ understanding of their condition at the point of diagnosis, in order to identify and correct misunderstandings and provide information of which patients are unaware. They could also use the opportunities offered at medication and other review touchpoints to review patients’ knowledge and understanding
The digital revolution will see you now: transforming patient experience in the digital era
Get PDFIndustry after industry has reinvented itself in response to upstart challengers and shifting consumer expectations that are the hallmarks of this new era. The same is true in healthcare, where we have weathered the introduction of the electronic medical records, patient portals and now interoperability. But to date our industry’s digital transformation has been guided largely by government regulation – leaving the design of the future of healthcare to be driven by policy makers and executed largely by IT departments. Meanwhile, most other industries have turned to a different guru for inspiration and guidance: the consumer. Northwell Health has undertaken a cultural transformation grounded in patient and family centered care. In this narrative, we explore our digital patient experience (dPx) journey and lessons learned. Every person, every role, every moment matters.
Experience Framework
This article is associated with the Innovation & Technology 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 len
Engagement of patients with scleroderma to revise an internet self-management program
Get PDFSystemic sclerosis (SSc) or scleroderma is a rare connective tissue disease. Many people do not have access to education programs. A self-management program was developed several years ago based on the literature and input from people with SSc. However, new therapies and treatment options have been developed since the program was developed. The purpose of this qualitative study was to identify and remedy gaps in an internet SSc self-management program to improve the quality of critical information relevant to effective management of the disease. Six focus groups with 30 participants with SSc were conducted: 2 telephone groups and 4 face-to-face groups. Prior to the focus group meetings, participants reviewed the existing website. A semi-structured interview guide elicited participants’ responses. Gaps were expressed in affect and positive affirmation; disease and symptom management; self-advocacy; information for caregivers, families, coworkers and strangers; tracking systems; information about local support groups; pictures and information on underrepresented groups; and general format. Discussants were positive regarding the audio voice over, exercise module, current content, health logs and checklists. People with SSc identified additional content to improve the internet self-management program. Many of the suggestions were incorporated into the existing program as modifications and additions to existing modules, patient testimonials, worksheets, resources sheets, and/or links to additional websites. People with rare, chronic conditions such as SSc need education and reliable sources of information and self-management skills.
Experience Framework
This article is associated with the Innovation & Technology 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 len
From diagnosis to routine care in type 1 diabetes in children: Parents’ experiences
Get PDFHaving a child who lives with a Type 1 Diabetes (T1D) can represent a high burden for parents. The objective of our study is to identify and analyze the main challenges expressed by parents so that health care services better meet the needs of parents of T1D children. Semi-structured interviews were conducted with parents of 19 T1D children regarding detection and diagnosis, initial management at the hospital, post-discharge adaptation including daycare or school reintegration, and long-term T1D monitoring. Data analysis was performed following an inductive approach. The results showed a lack of knowledge regarding T1D in the society, especially for parents and educators. Furthermore, most parents felt overwhelmed at the hospital, and not ready for the intense self-management education (SME). They suggested it could be split over an extended period and discussed from a more practical perspective. Parents’ burden is highest in the post-discharge adaptation stage especially for school reintegration, management of blood glucose levels and calculation of carbohydrates. Finally, returning to a social life was difficult, but contacts with diabetic families was a relief. In conclusion, the SME ought to be flexible and adapted to parents\u27 needs. Spreading it over a longer period would ease families’ experience. Efforts should also be made to alleviate the parents’ burden on the post-discharge adaptation perceived as the most difficult stage, especially for school reintegration where training and resources on T1D should be given to key staff. Public education campaigns would raise awareness and ensure better knowledge of T1D by general population.
Experience Framework
This article is associated with the Quality & Clinical Excellence 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
Service user interview panels for recruitment to UK child and adolescent mental health services: A questionnaire study exploring the experiences of young people, staff and candidates
Get PDFService user involvement is increasingly important in health and social care policy, including in Child and Adolescent Mental Health Services (CAMHS), but evidence evaluating involvement initiatives is lacking. This questionnaire study evaluated the use of young people’s (YP) interview panels in the recruitment of CAMHS staff, from the perspectives of YP, candidates and members of the staff interview panels. Self-report questionnaires were administered to YP, candidates and staff interview panel. This included quantitative and qualitative “free text” responses. YP’s panels were found to be important in hearing the voices of YP; participants all stated they would like YP to take part in future interviews. Qualitative analysis found YP provided added insight into the process, had a professional manner, were valued and important, gave clear feedback, and benefitted the YP involved. A number of changes to the process were identified. This evaluation found YP’s interview panels were feasible, and a valuable addition to the recruitment process, and should be considered in other CAMHS teams.
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
Using patient experience in optimizing the total knee arthroplasty patient journey
Get PDFInformation was used to improve the patient journey and to achieve patient-centered care. Patients (\u3e18 years, purposive sampling) were interviewed once at one point of their total knee arthrosis journey within the hospital setting. Patients were accompanied and observed during their hospital visit by one of the 19 healthcare professionals which were trained as interviewers. A qualitative research approach with in-depth and semi-structured interviews using a standardized interview guide were used to gather an in-depth understanding of the perceptions of patients. Interviews were written out with the emphasis on positive and negative feedback, quotes and observations that were made. The audio recordings were verbatim transcribed and coded using selective and open coding. Thirty-five semi-structured interviews were conducted. Five different themes were identified: overall experience, waiting, communication, information and facilities. Several easy fixes were dealt with immediately to improve service quality, productivity and the organization of the healthcare service. Other improvements were discussed with the stakeholders and were resolved directly or were planned for the long-term. Involving patients and let them collaborate with healthcare professionals is essential in optimizing patient-centered care. Most feedback was related to clarification and comprehensibility of the patient journey, to improve autonomy and to remove uncertainty of the patients. Continuity of care with medical personnel, personal attention and recognition of the problem are fundamental during the knee arthrosis patient journey.
Experience Framework
This article is associated with the Quality & Clinical Excellence 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
Refugees\u27 perceptions of primary care: What makes a good doctor\u27s visit?
Get PDFRedesigning primary care is a national priority, as the United States (US) struggles with issues of poor access, high cost, and suboptimal quality. Refugees are among the populations who suffer from America’s disjointed health care system, resulting in disproportionate health disparities. Although there are many studies on refugee health, few share refugees\u27 perceptions of primary care. We asked local refugees who were seen for primary care services at a midwestern academic nurse-led clinic, what makes a good doctor\u27s visit? The clinic served as the hub of a federally funded refugee Community Centered Health Home (CCHH) pilot project. This qualitative study adds to the growing body of literature that captures the voices of resettled refugees as they reflect on their health care experiences in their new home. The purpose of this study was to elicit the criteria refugees used to evaluate the quality of their care. Individual interviews were conducted with seven refugees as part of the larger CCHH pilot project. Through qualitative thematic analysis, four themes were identified that participants considered aspects of a good visit : 1. The ability to communicate without language barriers; 2. Open reciprocal dialogue with providers; 3. Provider professionalism; and 4. Accurate diagnosis and treatment. We offer recommendations to improve patient experience in the refugee population which may lead to better health outcomes. Future study is proposed to gain knowledge of how refugee perceptions of quality of care may change over time as they become more familiar with US health care system.
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