Understanding consumers’ preferences for health service change: measures to inform the development of patient-centred interventions in chronic disease ambulatory clinics

The economic and personal burden associated with chronic diseases is substantial for patients and health services. Patient-centred care is a promising and ethically important approach for improving patient experiences, outcomes, and health service efficiency. Data from patient-experience surveys suggests that health services struggle to consistently deliver patient-centred care. Improving this aspect of care is challenging, particularly as patient-experience data may not be sufficiently specific and detailed to guide the design of quality improvement initiatives. This thesis by publication reports the development and administration of a Web-based survey designed specifically for patient-centred quality improvement purposes. The thesis introduction provides an overview of the definition and benefits of patient-centred care along with evidence on existing gaps in the delivery and measurement of patient-centred care. A systematic literature review and 5 papers with original data comprise the thesis, which has the following overarching objectives: (1) To summarize the barriers to patient-centred care experienced by a range of chronic disease outpatients in order to generate a comprehensive list of potential quality improvement initiatives (Paper 1). ; (2) To systematically construct and evaluate a Web-based tool, the Consumer Preferences Survey, that enables outpatients to generate comprehensive, personalised, and prioritised lists of quality improvement initiatives (Paper 2). ; (3) To report the high-priority initiatives that are commonly selected across a large sample of chronic disease outpatients (Paper 3). ; (4) Identify a set of generic initiatives that are equally valued across a range of health services users along with a set of targeted initiatives selected by specific patient demographic and clinical groups (Papers 4 and 5). (5) Compare patients’ and health professionals’ preferences for quality improvement using the adapted Professional Preferences Survey (Paper 6). Cross-sectional survey data was provided by 939 individuals (124 health professionals and 815 outpatients) who were recruited from 9 Australian hospital-based services specializing in cardiology, neurology, or medical oncology care. The thesis discussion synthesizes the key findings from the 6 papers and reflects on the evidence informing patient-centred quality improvement in chronic disease care. Recommendations are provided to assist health services to design initiatives that align closely with patients’ preferences for change and improve the delivery of patient-centred care.