Vedran Falica

The COVID-19 pandemic revealed vulnerabilities in health systems’ ability to ensure access to and quality of care for people living with cardiovascular conditions and cancer during crises. Applying a whole-system approach, this thesis aims to support decision-makers across health system levels in strengthening the performance of cardiovascular and cancer care pathways, both during crises and in regular times. With a particular focus on resilience and person-centredness in healthcare delivery, this thesis addresses two main research questions, which guided Part I and Part II: I) How can the impact of shocks on healthcare delivery for people living with cardiovascular diseases and cancer be monitored through performance measurement and a care pathway approach? II) How can the performance of cardiovascular and cancer care pathways be strengthened to promote more resilient and person-centred healthcare delivery? Part I includes the studies described in Chapters 1-3, focusing on OECD countries. These studies map performance indicators and synthesise trends in changes in the quality of care delivered during the COVID-19 pandemic across acute cardiovascular and cancer care pathways. The scoping review methodology is applied in these three studies. In Chapter 1, indicators across the hospital cardiac care pathway were identified. In Chapter 2, focused on acute care delivery during the COVID-19 pandemic, a substantial number of performance indicators assessing acute cardiovascular conditions were mapped. Chapter 3 assessed the cancer care pathway. These three studies show similar trends across the acute cardiovascular and cancer care pathways. Notably, indicators show decreasing trends in the number of hospital admissions and of diagnostic and treatment procedures during the pandemic, compared with previous periods. Other indicators’ trends suggest worse clinical condition at presentation to the hospital and delays in treatment. These results underline the importance of monitoring the performance of these pathways systematically and regularly. These data may inform on which indicators should be prioritised for performance monitoring, promoting their standardisation and embedding in health information systems. This information may support clinical, managerial, and policy responses during crises. The performance indicators identified in Part I show variable depth across stages of the care pathways, probably reflecting limitations in health information systems and related to the search strategy. Furthermore, this performance information lacks standardisation and disaggregated information, constraining the ability of decision-makers to respond effectively. Part II describes three empirical studies in Chapters 4–6. These studies employ co-creation as a development approach to create actionable tools that empower decision-makers across health system levels. Chapter 4 presents the development of a context-sensitive tool to enhance resilience in cardiac care pathways, describing a study embedded in a Europe-focused project. Six elements were identified as key to embed resilience in cardiac care pathway design: a well-supported workforce, flexible infrastructure and care models, clear protocols, robust data systems, resilient supply chains, and strong cooperation and trust across healthcare settings. This study’s findings informed the development of a resilience assessment tool with four components: 1) the mapping of a context-specific cardiac care pathway, 2) a stakeholder mapping exercise, 3) a self-assessment preparedness checklist addressing the six resilience dimensions and 17 sub-dimensions, and 4) a resource toolkit to support the development of an action plan to strengthen resilience. The tool is currently undergoing pilot testing in selected European hospitals to enhance its practical applicability. Chapter 5 describes the participatory development of an Action Guide designed to support the embedding of cancer care performance indicators across cancer care pathways globally. Conducted in collaboration with a multi-stakeholder global organisation, this study focus on three clusters of metrics: timeliness of care, coordination of care, and person-centredness. Regulation of standardised cancer care pathways and legislation supporting data collection were identified as relevant enablers to advance the implementation of cancer metrics. Key barriers were underdeveloped electronic health records and limited database interoperability. This study demonstrates how cross-country exchange can contribute to embedding resilience and person-centredness into performance monitoring. The Action Guide is being piloted in some countries, such as Greece, to offer context-sensitive insights. Chapter 6 sets out to assess the systematic use of patient-reported outcome measures (PROMs) and to identify barriers and enablers for system-wide implementation from decision-makers’ perspectives, specifically involving OECD’s country officials. A total of 44 PROMs programmes, spanning 21 countries, were identified. The primary purpose of PROMs implementation was quality improvement. This study’s results show that system-wide implementation of PROMs remains constrained by various factors, such as limited resources, insufficient engagement from patients and clinicians, and technological barriers. Through the integration of the scoping review and co-creation methodological approaches, Parts I and II provide complementary insights into understanding and strengthening of cardiovascular and cancer care pathways. In Part I, the scoping review methodology proved a suitable method to identify indicators across these care pathways. The heterogeneity of indicators’ definitions, study designs, and sample sizes did not allow to conduct meta-analyses to quantify the impact of the pandemic. In Part II, the operationalisation of the principles of Participatory Action Research were adjusted to the organisations and projects in which the studies were embedded. The applicability of the co-created tools is particularly dependent on their contexts of development, requiring contextual adaptation rather than direct replication. The studies described in Chapters 1-5 specifically address either the cardiovascular or cancer fields. The performance indicators retrieved in Chapters 1-3 may inform performance measurement in other clinical conditions, however they need adaptation and validation. Similarly, the tools developed in Chapter 4-5 provide insights that are potentially transversal to many clinical fields. In both cases, this evidence needs to be tested and tailored before application to other clinical conditions. The studies of this thesis have an international focus, mostly including high- and middle-income countries. Considering the commonalities in health systems organisation, their priorities and challenges, the findings of this thesis are most likely applicable to health systems in other high- and middle-income countries. However, heterogenous governance structures and digital maturity could influence the transferability of the findings and tools. Building on linking decision-making at the micro-, meso- and macro-levels to foster system-level improvements, this thesis provides policy and practice recommendations. For policy-makers, the findings of this thesis underline the importance of prioritising the standardisation of performance indicators and their embedding in data infrastructures, embedding resilience in care pathway design through the six dimensions outlined in this thesis, strengthening patient feedback mechanisms through improved training, as well as investing in co-creation processes to develop trust, ownership and context-sensitive tools. Future research could address the development, standardisation, and assessment of the fitness-for-use and -purpose of the performance indicators identified in this thesis. The co-created tools developed in this thesis may be tested in real-world clinical and policy contexts. Building on a major global health crisis, this thesis combines data-driven insights in Part I with a collaborative development approach in Part II. Part I provides evidence to foster standardised performance information to support decision-making across health system levels. Building on the insights of Part I, and through the integration of perspectives from stakeholders at the policy, organisational and clinical-levels, Part II presents the co-creation of practical tools. These tools were designed to strengthen both the operationalisation of resilience within care pathways and the integration of person-centredness as a fundamental dimension of performance. Additionally, this thesis contributes to leveraging care pathway thinking as a relevant lens to contextualise metrics in performance measurement. Ultimately, the thesis seeks to support improvements in care experiences and outcomes for people living with cardiovascular diseases and cancer, whether in times of crises or within routine care delivery.