From patient to person : perspectives on the role of quality data, patient experience and patient involvement in the improvement of chronic care

Abstract: Introduction. Healthcare systems in many countries face numerous challenges including the increase in the number of chronic health conditions, the expectations that significant advances in healthcare and technology imposes, and the ever-tightening financial constraints. Chronic health problems, which often fluctuate in severity and duration, are complex. They require multiple responses over long periods of time and frequently involve several healthcare professions as well as the active involvement of patients. For these reasons, healthcare systems should take a more person-centred approach rather than a traditional healthcare approach that is designed for acute and episodic illnesses. Applying a health systems view argue that efforts on several health system levels need to be considered in order to improve care based on patients’ perspectives. However, how to achieve this in practice remain unclear and challenging. This thesis, which builds on two empirical cases (A and B) in Swedish healthcare, presents four studies ranging in setting from the national level to the patient level in order to understand how improvements in chronic care have evolved and how quality data and patient involvement have been issued at different levels in the healthcare system. The studies focuses on the patients’ role in developing and improving chronic care while addressing how this role can be supported. The chronological order of the studies also illustrates how the view of the patient role has changed during the last decades, and how the patients’ perspective can be captured and used for better care. Aim. The overall aim of this thesis is to contribute to our understanding of the patient as a resource in the effort to improve chronic care at three levels in the healthcare system. Methods. Case A (Studies I and II) investigates a national initiative aimed at increasing the use of national quality registries in clinical practice. Study I considers the macro level of national support functions (quality registry centres) and Study II considers the macro-meso level of national quality registries. Case B (Studies III and IV) investigates a rheumatology clinic with the mission of innovatively developing and using digital tools in patient-provider interaction. Study III considers the micro level of organisation and staff, and study IV considers the patient perspective and connects patients’ experiences to two frameworks. In case A, Studies I and II are multiple case studies. In study I, the sample consisted of all six quality registry centres (QRCs) in which managers and selected staff were interviewed twice. Documents (project plans, annual reports and web pages) were also collected. The material was analysed using conventional content analysis. Study II consisted of a purposive sample of nine national quality registries (NQRs). Managers and staff in key positions were interviewed and documents (annual reports) were collected. Conventional and directed content analysis were used in the analysis. In case B, Study III is a single-case study residing healthcare professionals purposively selected at the rheumatology clinic. Repeated interviews and documents (patient council meeting protocols) were analysed using conventional content analysis. Study IV is an interview study with patients at the rheumatology clinic purposively selected to provide a varied sample. The interviews were first inductively analysed and then related to two multi-level frameworks for person-centred care and patient engagement (directed). Results. Case A (Studies I and II) found that the QRCs and NQRs, in their support functions, adopted various strategies intended to enhance the use of quality registry data to improve healthcare work practices (e.g., by the use of patient-reported outcome and experience data). In Study I, the QRCs strategies varied from developing and adapting the quality registries’ basic characteristics for improvement purposes to supporting the healthcare organisations’ practical use of the NQRs. A main challenge for the QRCs was their lack of a formal decision mandate in the healthcare organisations they served. In Study II, the NQRs’ focused on three strategies to enhance the use of registry data: ensuring the registration of correct and complete data; ensuring updated and understandable information available to all stakeholders; and increasing the collaboration with relevant stakeholders. While the NQRs could provide these opportunities, the stakeholders (i.e., healthcare professionals, researchers, and patients) determined how the NQRs were used. Case B (Studies III and IV), shows the attempts by the rheumatology clinic to involve patients in their own care and in improvement efforts at the unit. In Study III, the unit employed several strategies for involving patients in their own care using digital patient-facing tools. At the organizational level, patients were involved in quality improvement practices. The healthcare professionals had to take on a flexible approach towards the varying needs among patients. In Study IV, the patients used several of the digital patient-facing tools provided to access information, communicate with the clinic, and take on more self-care responsibility. But the experiences and actual use of the tools among patients varied. Related to the two frameworks, the patients were mostly involved at the level of direct care, and/or in the process of care. Conclusions. Systems thinking and a historical perspective contributes with an understanding of complex, interacting systems, of contextual preconditions, and of the overall process development. The findings of this thesis provides some guidance for how to achieve improved care by involving patients. At the macro level, the findings reveal the importance to consider the kind of aggregate data captured, the use for healthcare improvement, and how patients’ experiences are captured. Hybrid support structures (as in Case A) with access at several system levels and with patient representation may provide a more holistic than narrow development perspective. At the meso level, the findings illuminate that the support structures in Case A had limited influence on the regional and hospital actors. The findings in Case B show that patients contributed in development of work practices and digital tools at unit and higher organizational levels. Yet, the patients’ role can be reinforced by care providers creating conditions for more active patients in such development processes, which requires knowledge, time and influence for patients. At the micro level, the findings show that patients’ involvement in their own care should consider the roles and responsibilities of both healthcare professionals and patients, flexibility towards variation in the patient group, the patient’s gradual progression in the self-care role, and how to manage deep-rooted expectations and ideas about who does what and how.