Patient and provider experiences with relationship, information, and management continuity

From 2003 to 2014, the Health Quality Council of Alberta (HQCA) monitored patient experiences with healthcare services through a biennial Satisfaction and Experience with Healthcare Services (SEHCS) survey. The findings consistently showed a direct link between coordination of care, an aspect of continuity of care, and healthcare outcomes. Specifically, it showed that better coordination is linked to positive outcomes; the reverse is also true. Given the critical role continuity of care plays in the healthcare system, the HQCA conducted in-depth interviews, interactive feedback sessions and focus groups with patients and providers to explore factors that influence both seamless and fragmented patient journeys. Continuity of care refers to “the degree to which a series of discrete healthcare events is experienced as coherent and connected and consistent with the patient’s healthcare needs and personal context”. Reviews of international literature have identified three major subtypes of continuity across healthcare settings: relationship, information, and management continuity. This study showed that from the patient perspective, relationship continuity is most valued and is foundational for experiencing information and management continuity. A trusting, patient-centred, and respectful relationship with a primary healthcare provider is central to this. From the provider perspective, information continuity is most important. Primary care providers get frustrated if information is withheld or delayed, and if other providers change treatment plans or medications. Patients highly value timely access to their own information. They also value having enough time during an appointment with a family doctor who listens and communicates effectively. Both patients and providers value and benefit from management continuity, which was described by many as a partnership or shared responsibility for managing and coordinating healthcare services. Future conversations about health system design should focus on how all providers and services can work together, and engage patients, to co-design a system that is built around patient-centred relationships

Will it make a difference if I showed up and share? A citizen’s perspective on improving public involvement processes for health system decisionmaking

Introduction: Health policy decision-makers are grappling with increasingly complex and ethically controversial decisions at a time when citizens are demanding more involvement in these decision processes. Objectives: To assess and revise a set of guiding principles for the design of public involvement processes generated from a synthesis of public participation design and evaluation frameworks that can be used to inform the design and evaluation of future public participation processes in the health sector. Methods: Six focus groups held in five Canadian provinces comprising citizens with considerable experience of public participation processes. Results and discussion: Our findings suggest that citizen participants are highly critical of, and discerning about, their public participation experiences. Yet, they are optimistic and determined to contribute in meaningful ways to future public policy processes. They are clear about where improvements are needed and give top priority to what information is shared, and how, among participants and decision-makers. The views of experienced citizens mapped well onto most of the prior principles of public involvement with a few modifications. First, participants gave greater emphasis to the content and balance of information for the purposes of building trust and credibility between citizens and decision-makers. Second, participants viewed themselves, as well as decision-makers, as sources of information to be shared through the consultation process. Finally, participants stressed the importance of getting the information and communication principles right over addressing all other principles

Managing juvenile idiopathic arthritis within the context of their life:What we learnt from children and youth living with juvenile idiopathic arthritis and their parents

Introduction: Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in children and causes short- and long-term disability. Optimal management requires pharmacologic and non-pharmacologic interventions. Few studies have explored the youth and family experience of the management of JIA. This study's objective was to explore the management experience of youth with JIA and their parents. Methods: This qualitative study used semi-structured interviews with youth 12–18 years of age with JIA receiving biological medication and parents of children with JIA on biological medication. Participants were recruited in clinics using convenience sampling. A thematic analysis approach was employed for data analysis. Results: Nine youth and 14 parents participated. Four themes were identified that encompassed an overarching theme of participants managing JIA within the context of their life: aspects of life affected by JIA and its management, lived experience with JIA management, medication decision-making, and involvement in decision-making. Juvenile idiopathic arthritis management is situated within the context of their life but is normally (outside acute events) not central. Conclusion: Two dimensions were added to those in the literature: parents' overall approaches to health and the sense of urgency surrounding decision-making. Our findings reinforce the importance of person- and family-centred care in paediatric rheumatology. That is, identifying what matters most to youth and their parents given their current life circumstances to provide a foundation for discussions of how they want to manage their JIA.</p

Organizational impact of evidence-informed decision making training initiatives : a case study comparison of two approaches

Background The impact of efforts by healthcare organizations to enhance the use of evidence to improve organizational processes through training programs has seldom been assessed. We therefore endeavored to assess whether and how the training of mid- and senior-level healthcare managers could lead to organizational change. Methods We conducted a theory-driven evaluation of the organizational impact of healthcare leaders’ participation in two training programs using a logic model based on Nonaka’s theory of knowledge conversion. We analyzed six case studies nested within the two programs using three embedded units of analysis (individual, group and organization). Interviews were conducted during intensive one-week data collection site visits. A total of 84 people were interviewed. Results We found that the impact of training could primarily be felt in trainees’ immediate work environments. The conversion of attitudes was found to be easier to achieve than the conversion of skills. Our results show that, although socialization and externalization were common in all cases, a lack of combination impeded the conversion of skills. We also identified several individual, organizational and program design factors that facilitated and/or impeded the dissemination of the attitudes and skills gained by trainees to other organizational members. Conclusions Our theory-driven evaluation showed that factors before, during and after training can influence the extent of skills and knowledge transfer. Our evaluation went further than previous research by revealing the influence—both positive and negative—of specific organizational factors on extending the impact of training programs

A substantive theory of family-centered care

Bibliography: p. 199-216

Organizational impact of evidence-informed decision making training initiatives: a case study comparison of two approaches

Abstract Background The impact of efforts by healthcare organizations to enhance the use of evidence to improve organizational processes through training programs has seldom been assessed. We therefore endeavored to assess whether and how the training of mid- and senior-level healthcare managers could lead to organizational change. Methods We conducted a theory-driven evaluation of the organizational impact of healthcare leaders’ participation in two training programs using a logic model based on Nonaka’s theory of knowledge conversion. We analyzed six case studies nested within the two programs using three embedded units of analysis (individual, group and organization). Interviews were conducted during intensive one-week data collection site visits. A total of 84 people were interviewed. Results We found that the impact of training could primarily be felt in trainees’ immediate work environments. The conversion of attitudes was found to be easier to achieve than the conversion of skills. Our results show that, although socialization and externalization were common in all cases, a lack of combination impeded the conversion of skills. We also identified several individual, organizational and program design factors that facilitated and/or impeded the dissemination of the attitudes and skills gained by trainees to other organizational members. Conclusions Our theory-driven evaluation showed that factors before, during and after training can influence the extent of skills and knowledge transfer. Our evaluation went further than previous research by revealing the influence—both positive and negative—of specific organizational factors on extending the impact of training programs

Living with Hepatitis C Virus: A Systematic Review and Narrative Synthesis of Qualitative Literature

Background and Aims. The lived experience of HCV has not been well documented in the literature. The aim of this systematic review was to understand the experiences of living with Hepatitis C Virus (HCV). Methods. Five databases were searched from inception until January 19, 2015. Studies were included if they focused on adults diagnosed with HCV; reported experience living with HCV; and described original research. Results. 46 studies were included. Studies found that participants had reduced quality of life due to physical symptoms. Due to physical symptoms and discrimination, many participants switched to part-time work or quit their jobs. Many individuals reported negative experiences with the healthcare system; themes of feeling unsupported, not having adequate information, and not feeling involved in decisions were reported. Stigma significantly impacted those living with HCV. Conclusions. Published literature indicates that those with HCV often feel stigmatized and unsupported in their care, relationships, and work environments, while simultaneously coping with physical and psychological symptoms. This synthesis points to areas where greater education, compassion, and patient-centered healthcare could improve the experience of people living with HCV

Current status of health technology reassessment of non-drug technologies: survey and key informant interviews

Abstract Background Health Technology Reassessment (HTR) is a structured, evidence-based assessment of the clinical, social, ethical and economic effects of a technology currently used in the health care system, to inform optimal use of that technology in comparison to its alternatives. Little is known about current international HTR practices. The objective of this research was to summarize experience-based information gathered from international experts on the development, initiation and implementation of a HTR program. Methods A mixed methods approach, using a survey and in-depth interviews, was adopted. The survey covered 8 concepts: prioritization/identification of potentially obsolete technologies; program development; implementation; mitigation; program championing; stakeholder engagement; monitoring; and reinvestment. Members of Health Technology Assessment International (HTAi) and the International Network of Agencies for Health Technology Assessment (INAHTA) formed the sampling frame. Participation was solicited via email and the survey was administered online using SurveyMonkey. Survey results were analyzed using descriptive statistics. To gather more in-depth knowledge, semi-structured interviews were conducted among organizations with active HTR programs. Interview questions were developed using the same 8 concepts. The hour-long interviews were recorded, transcribed and analyzed using constant comparative analysis. Results Ninety-five individuals responded to the survey: 49 were not discussing HTR, 21 were beginning to discuss HTR, nine were imminently developing a program, and 16 participants had programs and were completing reassessments. The survey results revealed that methods vary widely and that although HTR is a powerful tool, it is currently not being used to its full potential. Of the 16 with active programs, nine agreed to participate in follow-up interviews. Interview participants identified early and extensive stakeholder engagement as the most important factors for success. A lack of top-down support and financial and human resources are inhibiting program development. Discussion HTR is in its infancy. Although HTRs are being conducted, there are no standardized approaches. However, much can be learned from current international work. Future work should focus on developing a comprehensive methodology, reporting the processes of reassessments and sharing successes and challenges in a common platform.</p