Patient Experience Journal (PXJ, The Beryl Institute)
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Patient partner compensation in research and health care: the patient perspective on why and how
Get PDFAs 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 compensation policies for their engagement practices with patients and family members. Organizations face an ongoing challenge to achieve diversity among their patient advisors so that all segments of the community they serve are represented. In particular, marginalized populations are confronted with financial and social determinants that are often barriers to full inclusion. Comprehensive compensation policies overcome these barriers. While there is some guidance available from organizations like PCORI, the predominant culture in health care resists the notion of compensation. In addition to defining core principles behind compensation, we outline how to put those principles into practice in a valid, credible manner that honours and values the contributions of patients and families whether in quality improvement or health research.
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
What medicine can learn from pediatrics: A mother\u27s perspective
Get PDFAs a mother of a young adult child with Aspergers syndrome, as well as being a long-term patient myself (liver transplant in 2005), I have extensive experience in both camps. Recently my 20-year old son was admitted to a children’s hospital for a twisted colon that had to be surgically reduced. As the parent of a child with special needs and related physical health-related issues connected to him being on the autism spectrum, I was naturally very concerned about him entering a hospital (perhaps PTSD based on my own experience at moments). Surprising to me, the experience was a very positive one. There were many practices I noticed among the nurses and physicians that reduced anxiety, embarrassment and overall stress amongst their young patients and family members who were there for them that ranged from signs on the door, the way they communicated with patient and parent(s), to the manner in which they explained the diagnosis, course of action or treatment and recovery time. All of these concepts or practices could easily be applied to treating adult patients as well. This article will shed light on ways pediatric medicine can positively impact the way we treat all people of all ages who are ill and hospitalized
Integrating the patient and caregiver voice in the context of pediatric, adolescent, and young adult care: A family-centered approach
Get PDFFamily-centered care (FCC) is defined as an approach to care coordination founded in collaborative partnerships between healthcare providers, patients and their family caregivers. Amid the enthusiasm for FCC in the pediatric setting, opportunities have been identified to operationalize the engagement of pediatric, adolescent and young adult patients and their caregivers into decision making that translates not only to their healthcare, but also to the context in which care is provided, as well as the research informing their care. At a National Cancer Institute-designated comprehensive cancer center, the Children’s Cancer Hospital was instrumental in designing and implementing patient and family engagement councils to inform institutional policies, guidelines, environment of care and research. The councils include: he Family Advisory Council, the Supportive Care Council, the Young Adult Advisory Council, and the Patient Advisory Council for Teens (imPACT). The development and outcomes of these councils is presented as an exemplar for patient and family engagement that translates to tangible healthcare delivery initiatives
What older adults want from their health care providers
Get PDFChanging 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, mapping of story elements followed by comparison and theming across participants’ stories. Older adults perceived that relationship and informational continuity fostered effective communication and supported coordination of care. Timely access to care was valued and flexibility in types of medical encounters was suggested as an option to improve provider responsiveness. Access to information about community resources was limited and older adults required support with navigation. Structural (e.g. availability of services and transportation), financial and personal barriers exist for older adults to access and use community health services. Health care transitions were inadequately supported by comprehensive discharge planning, timely communication and follow up post discharge. New models of care need to embrace person-centred and goal directed approaches to the delivery of care to improve patient experience. Older adults offer valuable perspectives as community partners and co-designers of systems change in efforts to re-engineer health services
Elevating the discourse on experience in healthcare’s uncertain times
Get PDFOver the last five years, we have been inspired by the breadth of contributions that have helped shape the experience landscape through PXJ as well as the reach that the conversation on patient experience has had. Both the authors and readers of PXJ reinforce that the conversation on patient experience and the human experience in healthcare is not one dominated by national intent or even policy. While for some motivation has come in some part from mandated action, for most tackling this idea in healthcare is it grounded in two core realities. The first, in healthcare at its core we remain committed to ensuring the best for those we serve as active and engaged people, not simply as passive participants in care. This requires a different way of thinking and doing than a simple model for throughput or a checklist mentality. The complexity of the humanity at the heart of healthcare perhaps is also its greatest strength. In acknowledging the humanity of healthcare, we breathe life into our organizations, we excavate lost purpose in burned out and fatigued practitioners and we give permission to connect with others. This connection is not simply in the buildings we find ourselves, but it is our humanity that links us across communities and countries, continents and oceans. This connection and the conversation that supports it will forever be the grounds on which healthcare will ultimately succeed, it is the foundation on which we can and must elevate the discourse on experience
Barriers and facilitators to family participation in the care of their hospitalized loved ones
Get PDFThis study’s objective was to better understand family members’ experiences in order to identify how healthcare organizations can facilitate their participation in the care of a hospitalized loved one. Eighteen individuals at the bedside of a hospitalized loved one were interviewed individually. Roles at the bedside and factors that facilitated their participation or represented barriers were examined. A qualitative analysis using a mixed inductive/deductive approach was performed. Reassurance and emotional support, as well as sharing information with the healthcare team emerged as main roles. Quality and timeliness of the information received about the patient’s condition, prognosis and changes in medical condition, as well as information on how to participate in their care, were the factors most frequently evoked as facilitating participation. On the other hand, the need to improve communication channels and access to doctors were highlighted. Most family members having no prior knowledge or exposure to healthcare environments reported feeling overwhelmed in this foreign environment. Among the suggestions on how to improve their experience, having a well-identified contact person who liaises with them and who can instruct them on how to participate in care during hospitalization and back at home was frequently suggested. Furthermore, many mentioned that recognizing the experiential knowledge they have of the patient allows for more holistic care and contributes to improve both patient and family experience. Families need to be adequately recognized and supported and have access to information in a timely manner so that their contribution to their loved one’s care is maximized and the burden associated with this stressful experience alleviated
Caring moments within an interprofessional healthcare team: Children and adolescent perspectives
Get PDFPatients are now recognized as key partners to improve healthcare outcomes. Some organisations such as the WHO or the Canadian Interprofessional Health Collaborative (CIHC) encourage considering patients as partners in the interprofessional healthcare team. However, limited knowledge exists on patients’ perspective of interprofessional collaboration (IPC) and of their role in the collaborative process, particularly in pediatric settings. The experiences and perspectives of patients regarding IPC have to be considered in order to fully understand the concept of IPC and integrate it into practice. This qualitative study aimed at gaining a better understanding of the perspective of children of IPC, how it affects their experiences of care and how they perceive their own role within the interprofessional team. Semi-structured interviews were used in the pediatric service of a Swiss university hospital, with ten children and adolescents aged between 11-17 years. The participants described the interactions they observed between nurses and physicians and provided insights into how they perceived the quality of that relationship. A respectful relationship between nurses and physicians may have improved the experience of a caring environment. The participants did not perceive their role to be pivotal into the interprofessional relationship. The findings of this study indicate that the interactions between healthcare professionals have an influence on the perspectives and experiences of the participants of their hospitalisation and of IPC. However, integrating children and adolescents into collaborative process will need a change of paradigm and beliefs regarding IPC
Improving the patient experience through patient portals: Insights from experienced portal users
Get PDFBackground: 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 Medical Center (AMC). Interviewees were patients with chronic conditions who had been identified by their providers as experienced portal users. Interview transcripts were analyzed using rigorous qualitative methods. Results: Common themes emerged around both logistical and psychological benefits of portal use. Logistical benefits included increased efficiency, improved ability to track their health information, and better documentation of communications and information during and between office visits. Psychological benefits were a greater sense of collaboration in care, increased trust in providers, and enhanced engagement in health care activities. Conclusion: Experienced portal users discussed ways in which patient portals improved both their ability to manage their care and their relationships with providers. Frequent users described a sense of collaboration with their providers and greater trust in the relationship. These findings suggest that portal use may be a mechanism through which patients can increase patient engagement and improve the patient experience
Wait time reality check: The convergence of process, perception, and expectation
Get PDFThere are few experiences as ubiquitous to patients as the experience of waiting. It is an occurrence that transcends diagnosis, is common to all demographics, and is shared across the continuum of care. The experience can be frustrating and full of ambiguity for patients and their families. Wait time and delays can lead to patients sensing a loss of control and magnify the feelings of anxiety they may already be suffering. In an effort to improve patient experience, a framework was developed to examine patient satisfaction as a function of expectations, perceptions, and reality. The process domain focused on the objective reality of the pre-surgical lead times; while the expectation and perception domains focused on the family understanding of the timeliness of the pre-surgical process prior to, and directly following the experience. Guided by this framework, data was collected and analyzed at surgical units throughout the Texas Children’s Hospital system. Insights gained from this analysis identified distinct needs where focused improvement approaches could be implemented. Throughout this paper, we will provide insight into the framework developed, case studies illustrating its effectiveness and insights as to how it can be applied at any healthcare organization to improve patient satisfaction
Can specific feedback improve patients’ satisfaction with hospitalist physicians? A feasibility study using a validated tool to assess inpatient satisfaction
Get PDFThe Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) is a patient satisfaction survey utilized for hospital reimbursement calculations. It is not, however, considered a valid measure of individual physician performance. The object of this study was to determine if the “Tool to Assess Inpatient Satisfaction with Care from Hospitalists” (TAISCH) instrument could be leveraged to improve patient satisfaction. A pragmatic pre/post study was conducted with adult inpatients admitted to either teaching or non-teaching general internal medicine services at a large mid-western academic medical center. TAISCH surveys were administered to patients (n=192) who were able to identify their hospitalist provider by name or photograph. An intervention consisting of performance cards (n=20) and group reflection sessions (n=13) was carried out. Pre- and post-intervention TAISCH surveys were administered over a period of approximately 18 months. Coinciding pre- and post-intervention HCAHPS scores were also collected. The results show physicians received significantly higher scores following the intervention on “checking for understanding” (4.63 vs. 4.82, p=0.026) and “confidence in provider” (4.45 vs. 4.64, p=0.048). Pre- and post-intervention HCAHPS “Top Box” scores were no different for any of the three doctor communication questions (explain p=0.086, listen p=0.19, courtesy and respect p=0.19). The TAISCH survey, while providing feedback that is more detailed, actionable, and individually attributable than the HCAHPS, is time and resource intensive and appears to be insufficient in isolation to improve patient perceptions of their hospitalist physician