Engagement of patient and family advisors in health system redesign in Canada.

OBJECTIVES: Globally, there has been a shift towards integrated care delivery and patient-centredness in the design of health services. Such a transformation is underway in Ontario, which is progressively using an interprofessional team-based approach known as Ontario Health Teams (OHTs) to deliver care. During their initial development, OHTs were required to integrate patient and families' preferences, experiences and opinions in the form of consultation and partnership with patient and family advisors (PFAs). This study aimed to understand how PFAs were involved in the early stages of planning for health system change and the perceived benefits of including PFAs in system reform. METHODS: This study used a qualitative descriptive design. Semi-structured interviews were conducted with 126 participants at 12 OHTs, including PFA (n = 16) and non-PFA (n = 110) members (e.g. clinicians). Data were analysed thematically. RESULTS: We identified four themes; mechanisms of engagement, motivations to engage, challenges to PFA engagement and PFAs' impact and added value. Overall, participants viewed PFA engagement positively and PFAs felt valued and empowered. There remain logistical challenges around PFA compensation, and the amount of time and training expected of PFAs. However, all participants believed that developing an understanding of the patient, caregiver and family experience will strengthen the engagement of PFAs in OHT planning, decisions and policies. CONCLUSIONS: Diverse approaches to and stages of PFA engagement fostered meaningful and highly valued contributions to OHT development. These were considered critical to successfully achieving the mandate of patient-centred care reform.

Factors Impacting Primary Care Engagement in a New Approach to Integrating Care in Ontario, Canada.

Introduction: In 2019, Ontario's Ministry of Health (the Ministry) introduced Ontario Health Teams (OHTs) to provide population-based integrated healthcare. Primary care was foundational to this approach. We sought to identify factors that impacted primary care engagement during OHT formation from different perspectives. Methods: Interviews with 111 participants (administrators n = 80; primary care providers n = 17; patient family advisors = 14) from 11 OHTs were conducted following a semi-structured guide. Interviews were transcribed, coded, and thematically analyzed. Results: Participants felt that primary care engagement was an ongoing, continuous cycle. Four themes were identified: 1) 'A low rules environment': limited direction from the Ministry (system-level), 2) 'They're at different starting points': impact of local context (initiative-level); 3) 'We want primary care to be actively involved': engagement efforts made by OHTs (initiative-level); 4) 'Waiting to hear a little bit more': primary care concerns about the OHT approach (sector-level). Thirteen factors impacting primary care engagement were identified across the four themes. Discussion and Conclusion: The 13 factors influencing primary care engagement were interconnected and operated at health system, integrated care initiative, and sector levels. Future research should focus on integrated care initiatives as they mature, to address potential gaps in the involvement of primary care physicians.

Foundations, Functions and Current State of Collaborative Leadership: A Case of Newly Developing Integrated Care in Ontario.

In 2019, the Government of Ontario announced a health system transformation to end hallway healthcare by implementing integrated care systems known as Ontario Health Teams (OHTs). Establishing an integrated care system is a monumental task requiring collaborative and participatory leadership structures. Based on a survey of 480 OHT signatory members and 125 in-depth interviews with leaders from 12 OHTs, we describe how developing OHTs conceptualized and executed leadership. While collaborative leadership is common, the approaches are varied and the leadership structure is informed by contextual differences. We provide suggestions on how to support the success of collaborative leadership for decision and policy makers, leaders and anyone working toward integrated care.

The beginnings of health system transformation: How Ontario Health Teams are implementing change in the context of uncertainty.

PURPOSE/ SETTING: The launch of Ontario Health Teams (OHTs) by the Canadian province of Ontario in 2019 represented a milestone in the journey towards integrated care and population health management. However, early model development was riddled with uncertainty. We explore what makes transformation possible even in the context of uncertainty. METHODS: We conducted 125 interviews with administrators, clinicians, and patient and family advisors across 12 OHTs, representatively selected across geography and leadership sector, between January to September 2020. Interviews were transcribed and thematically coded, and a Foucauldian approach informed analysis. FINDINGS: A sense of uncertainty was identified at three levels: (a) at a cross-organizational level, policymakers were perceived as providing inadequate direction; (b) at a sectoral level, certain sectors were uncertain about participating due to historic vulnerabilities; and (c) at a professional level, physicians were uncertain about the value of the new model and their place within it. These concerns were countered by a recognition of the need for change, inclusive decision-making, and developing empathy and awareness of each other's needs. This helped unsettle traditional hierarchies and facilitate new forms of certainty. CONCLUSION: Understanding the possibilities and challenges of this endeavour will be helpful to program implementers negotiating uncertain environments as well as to policymakers seeking to provide guidance without stymieing local innovation.

The reimagination of sustainable integrated care in Ontario, Canada.

PURPOSE/SETTING: To encourage clinical and financial efficiency, the Canadian province of Ontario initiated an integrated care program - Integrated Funding Models (IFMs) that required collaboration and coordination across acute and post-acute care sectors. This research shows how program implementers went beyond policy-makers' original designs, to make integrated care sustainable for chronic diseases. METHODS: Forty-five interviews were conducted with program participants at three chronic disease programs, as well as with policymakers. Interviews were conducted over two phases; during early implementation in 2016, and as programs matured in 2018. Data were analyzed through a cultural constructivist lens to understand how participants shaped programs. FINDINGS: Participants desired greater accountability and control. Participants in the first program wanted localized control over decision-making. In the second, participants initiated greater control over financial uncertainty. In the third program, hospital participants sought greater control over community care. Participants across programs simultaneously wanted integrated care to be expanded holistically, spatially, and temporally for patients, extending the length of care, and expanding the spaces in which care was provided. Findings also suggest a gap between program implementers' and policymakers' conceptualizations of integrated care. CONCLUSION: This work shows how IFMs were reimagined in ways that transcended their original conceptualization as spatially and temporally delimited initiatives aimed at improving coordination and efficiency. It has practical implications for those facing sustainability challenges in other contexts.

mHOMR: a feasibility study of an automated system for identifying inpatients having an elevated risk of 1-year mortality.

OBJECTIVE: The need for clinical staff to reliably identify patients with a shortened life expectancy is an obstacle to improving palliative and end-of-life care. We developed and evaluated the feasibility of an automated tool to identify patients with a high risk of death in the next year to prompt treating physicians to consider a palliative approach and reduce the identification burden faced by clinical staff. METHODS: Two-phase feasibility study conducted at two quaternary healthcare facilities in Toronto, Canada. We modified the Hospitalised-patient One-year Mortality Risk (HOMR) score, which identifies patients having an elevated 1-year mortality risk, to use only data available at the time of admission. An application prompted the admitting team when patients had an elevated mortality risk and suggested a palliative approach. The incidences of goals of care discussions and/or palliative care consultation were abstracted from medical records. RESULTS: Our model (C-statistic=0.89) was found to be similarly accurate to the original HOMR score and identified 15.8% and 12.2% of admitted patients at Sites 1 and 2, respectively. Of 400 patients included, the most common indications for admission included a frailty condition (219, 55%), chronic organ failure (91, 23%) and cancer (78, 20%). At Site 1 (integrated notification), patients with the notification were significantly more likely to have a discussion about goals of care and/or palliative care consultation (35% vs 20%, p = 0.016). At Site 2 (electronic mail), there was no significant difference (45% vs 53%, p = 0.322). CONCLUSIONS: Our application is an accurate, feasible and timely identification tool for patients at elevated risk of death in the next year and may be effective for improving palliative and end-of-life care.

The Generation of Integration: The Early Experience of Implementing Bundled Care in Ontario, Canada.

Policy Points Policymakers interested in advancing integrated models of care may benefit from understanding how integration itself is generated. Integration is analyzed as the generation of connectivity and consensus-the coming together of people, practices, and things. Integration was mediated by chosen program structures and generated by establishing partnerships, building trust, developing thoughtful models, engaging clinicians in strategies, and sharing data across systems. This study provides examples of on-the-ground integration strategies in 6 programs, suggests contexts that better lend themselves to integration initiatives, and demonstrates how programs may be examined for the very thing they seek to implement-integration itself. CONTEXT: By bundling services and encouraging interprofessional and interorganizational collaboration, integrated health care models counter fragmented health care delivery and rising system costs. Building on a policy impetus toward integration, the Ministry of Health and Long-Term Care in the Canadian province of Ontario chose 6 programs, each comprising multiple hospital and community partners, to implement bundled care, also referred to as integrated-funding models. While research has been conducted on the facilitators and challenges of integration, there is less known about how integration is generated. This article explores the generation of integration through the dynamic interplay of contexts and mechanisms and of structures and subjects. METHODS: For this qualitative study, we conducted 48 interviews with program stakeholders, from organization leaders and managers to physicians and integrated care coordinators, across the hospital-community spectrum. We then used content analysis to explore the extent to which themes were shared across programs and to identify idiosyncrasies, followed by a realist evaluation approach to understand how integration was produced in structural and everyday ways in local program contexts. FINDINGS: Integration was generated through the successful production of connectivity and consensus-the coming together of people, practice, and things, as perceived and experienced by stakeholders. When able, the programs harnessed existing cultures of clinician engagement, and leveraged established partnerships. However, integration could be achieved even without these histories, by building trust, developing thoughtful models, using clinicians' existing engagement strategies, and implementing shared systems and technologies. The programs' structures (from their scale to their chosen patient population) also contextualized and mediated integration. CONCLUSIONS: This article has both practical and theoretical implications. It provides transferable insights into the strategies by which integration is generated. It also contributes conceptually to realist approaches to evaluation by advancing an understanding of mechanisms as contextually and temporally contingent, with the capacity to produce new contexts, which in turn generate new sets of mechanisms.

"I don't know exactly what you're referring to": the challenge of values elicitation in decision making for implantable cardioverter-defibrillators.

PURPOSE: Patients' values are a key component of patient-centered care and shared decision making in health care organizations. There is limited understanding on how patients' values guide their health related decision making or how patients understand the concept of values during these processes. This study investigated patients' understanding of their values in the context of considering the risks/benefits of receiving an implantable cardioverter-defibrillator (ICD). PATIENTS AND METHODS: A qualitative substudy was conducted within a feasibility trial with first-time ICD candidates randomized to receive a patient decision aid or usual care prior to specialist consultation. Semi-structured interviews were conducted with participants post-implantation or post-specialist consultation. RESULTS: Sixteen patients (ten male) aged 47-87 years participated. Of these, ten (62.5%) received the patient decision aid prior to specialist consultation. Findings revealed patients were confused by the word "values" and had difficulty expressing values related to risks/benefits during ICD decision making. When probed, values were conceptualized broadly capturing other factors such as desire to live, good quality of life, family's views, ICD information, control over decision, and medical authority. CONCLUSION: This study revealed the difficulty patients considering an ICD had with articulating their values in the context of an ICD health decision and highlighted the challenge to effectively elicit patients' values within health decisions overall. It is suggested that there should be a shift away from the use of the word "values" when speaking directly to patients toward language such as "what matters to you the most" or "what is most important to you".

Questioning patient engagement: research scientists' perceptions of the challenges of patient engagement in a cardiovascular research network.

BACKGROUND: Patient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers' perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies. METHODS: We employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics. RESULTS: Thirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients' roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research. CONCLUSION: Concerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.

Peer-to-peer mentoring for individuals with early inflammatory arthritis: feasibility pilot.

OBJECTIVES: To examine the feasibility and potential benefits of early peer support to improve the health and quality of life of individuals with early inflammatory arthritis (EIA). DESIGN: Feasibility study using the 2008 Medical Research Council framework as a theoretical basis. A literature review, environmental scan, and interviews with patients, families and healthcare providers guided the development of peer mentor training sessions and a peer-to-peer mentoring programme. Peer mentors were trained and paired with a mentee to receive (face-to-face or telephone) support over 12 weeks. SETTING: Two academic teaching hospitals in Toronto, Ontario, Canada. PARTICIPANTS: Nine pairs consisting of one peer mentor and one mentee were matched based on factors such as age and work status. PRIMARY OUTCOME MEASURE: Mentee outcomes of disease modifying antirheumatic drugs (DMARDs)/biological treatment use, self-efficacy, self-management, health-related quality of life, anxiety, coping efficacy, social support and disease activity were measured using validated tools. Descriptive statistics and effect sizes were calculated to determine clinically important (>0.3) changes. Peer mentor self-efficacy was assessed using a self-efficacy scale. Interviews conducted with participants examined acceptability and feasibility of procedures and outcome measures, as well as perspectives on the value of peer support for individuals with EIA. Themes were identified through constant comparison. RESULTS: Mentees experienced improvements in the overall arthritis impact on life, coping efficacy and social support (effect size >0.3). Mentees also perceived emotional, informational, appraisal and instrumental support. Mentors also reported benefits and learnt from mentees' fortitude and self-management skills. The training was well received by mentors. Their self-efficacy increased significantly after training completion. Participants' experience of peer support was informed by the unique relationship with their peer. All participants were unequivocal about the need for peer support for individuals with EIA. CONCLUSIONS: The intervention was well received. Training, peer support programme and outcome measures were demonstrated to be feasible with modifications. Early peer support may augment current rheumatological care. TRIAL REGISTRATION NUMBER: NCT01054963, NCT01054131.

The experience and impact of chronic disease peer support interventions: a qualitative synthesis.

OBJECTIVE: Our aim was to synthesise qualitative literature about the perceived impact and experience of participating in peer support interventions for individuals with chronic disease. METHODS: We carried out a meta-ethnography to synthesize 25 papers meeting specific inclusion criteria. RESULTS: Thirteen concepts were identified that reflected participants' perceptions of the experience and impact of intervention participation. These were brought together in a conceptual model that highlighted both positive and negative perceptions, while also indicating if specific experiences and impacts had greater pertinence for mentors, mentees, or were mutually experienced. CONCLUSION: Although peer support interventions may establish uneven power relationships between mentors and mentees, there is also potential for initially asymmetrical relationships to become more symmetrical over time. Our synthesis suggests that emotional support is particularly valued when delivered under conditions that do not merely reproduce biomedical hierarchies of power. PRACTICE IMPLICATIONS: This synthesis suggests that those developing and implementing peer support interventions need to be sensitive to their potential negative effects. They will need to manage the tension between the hierarchical and egalitarian aspects of peer support interventions, and consider the impact on both mentors and mentees.