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High profile composite indicators seeking to summarise aspects of the quality of healthcare organisations often have important impacts: they may be reputationally consequential for healthcare organisations, may affect prioritisation for inspection or action by regulators, and may be responsible for effecting changes in the way services are delivered. Use of composite indicators, which include examples such as the Hospital Compare Star Ratings in the US and the Quality and Outcomes Framework in the UK, is proliferating in healthcare. But to date there is limited understand of how such indicators should be designed and reported. This thesis seeks to address this gap, characterising relevant challenges in the design of composite indicators and exploring their reporting might be improved. My examination of composite indicators is formed from two principal components. The first comprises two quantitative studies, which are conceptually linked. These studies investigate the sensitivity of the ratings and rankings of hospitals to the exact technical methods by which composite indicators are produced. I show that composite indicators can be highly sensitive to technical decisions, and that different composite indicators are affected differently by these, rarely examined, technical issues. The second component is a qualitative interview study, for which I interviewed experts in performance measurement about the process of developing a composite indicator. This study highlighted two crucial aspects of the development of composite indicators. First, the purpose of a composite indicator needs to drive every aspect of technical decisions relating to their specification. Second, the development process should be iterative: developers must be willing and able to revise the purpose of the indicator and restart the development process if it subsequently becomes apparent that the composite indicator does not match the purpose for which it is being developed. The results of the quantitative and qualitative studies in this thesis revealed a number of challenges for the design of composite indicators, but also helped to identify possible ways for improving their design. The qualitative study catalogues important decision points which could be used as a framework for design choices for composite indicators. In combination with the results of the quantitative studies, which inter alia show the usefulness of applications of Monte Carlo sensitivity analysis as part of the development and evaluation of composites, this catalogue of decisions holds promise for identifying and addressing problems with composite indicator in the design stage and for offering critiques of existing indicators. Together these considerations point toward designing-in an iterative approach to processes used in the development of composite indicators, in which sensitivity analysis is used to assess the implications of each design decision. Finally, my results lay the groundwork for future development of a reporting guideline for the development and reporting of composite indicators of healthcare quality.

Children with an invasive device are at risk of serious infection and its complications. Though studies suggest that strict adherence to infection prevention and control (IPC) practices can reduce device-related infections, this research has mainly taken place in hospital settings where care is performed by trained professionals in dedicated environments. Little is known about device care for the growing number of children with invasive devices who live at home, where the care of the device is undertaken by a complex network of family members and professionals across multiple settings. This study seeks to explore how device care is performed outside formal healthcare settings, and investigates how families and professionals work together. Semi-structured interviews were carried out with families and professionals who were recruited using a purposive sampling method. Eighteen mothers, four fathers, and eleven children participated in family interviews; 20 interviews were undertaken with professionals from a range of disciplines. Data analysis was based on the constant comparative method. Analysis revealed that families are engaged in a complex process of trade-offs as they try to balance the demands of device care while maintaining a normal life for their family. Though avoiding infection is a key priority for families, it is not the only one: maintaining a sense of “normal life” is another goal. Maintaining compliance with IPC practices requires much work and expertise on the part of families, yet this may not be fully recognised by professionals. Some professionals recognised the expertise of families, and worked with them to achieve a shared goal of maintaining IPC in the context of everyday life – a form of co-production. Co-production offers a model for children, families and professionals to work together in a way that makes best use of their expertise and skills, responding to individual families’ priorities, and tailored to their particular circumstances.

Persuasive arguments exist as to why the harmonisation of tissue banks is important. Yet harmonisation has not happened on a large scale and empirical research has not investigated the reasons for this in detail. This thesis presents the results of ethnographic research using the case study of cancer tissue banks to identify influences on harmonisation. The research involved 40 interviews and over 117 hours of observations with professionals working across 15 organisations. Data analysis was based on the constant comparative method with use of sensitising constructs from literatures on standards and diffusion of innovation. A new model of the tissue supply chain was developed and refined against the findings. Harmonisation depends on the creation, implementation and outcome of standards. The empirical work showed that a complex picture of harmonisation emerges when the creation, implementation and outcome of standards are considered separately. Different factors act as barriers or facilitators, or as both, at each stage. Standard creation in cancer tissue banks is obstructed by a lack of agreement between organisations and professionals, who may have differing interests and views on the appropriate type and scope of standards, who should create them and how. Standard implementation can be enabled or hindered by standard design, the actions and features of organisations, and individual and professional factors. Critically, the outcome of implementing standards has not always increased harmonisation; in some cases the result is fragmentation, duplication or exclusion. The thesis describes cross-cutting political, social and technical issues that arise during the tissue supply chain and throughout the stages of standard creation and implementation, making harmonisation complicated and difficult to achieve. Eight recommendations are offered for how harmonisation can be facilitated in practice.

The rate of preterm birth is 5-9% of all births in Europe, and 12-13% in the United States of America (USA); the rates in both continents are increasing, partly due to the higher number of multiple births associated with assisted conceptions.1 About 30-35% of preterm births are the result of maternal or fetal disease, but 40-45% of premature births result from spontaneous preterm birth (SPL) and 25-30% from preterm rupture of the membranes (PROM). For families struggling to cope with having a baby in special care, this will be one of the most difficult, emotional and stressful times of their lives,2 whatever the longer term outcome. The sequelae of preterm birth also pose significant challenges. Children born preterm are at increased risk of major disabilities, such as cerebral palsy, with the risk increasing with decreasing gestation at birth.3 Many preterm children without disability develop serious behavioural and educational difficulties.4 The prevention of preterm birth and reduction of associated disability are therefore important health priorities, and are a major focus of my work. The principle that health care should be “evidence-based” lies at the heart of today’s National Health Service (NHS) but this has not always been the case. Lessons about the importance of evaluation of treatments can readily be demonstrated within maternity and perinatal care. Perhaps the most famous example is that of thalidomide, which became recommended treatment for pregnant women to relieve morning sickness in the late 1950s.5 By the beginning of the 1960s obstetricians had begun to notice increased numbers of children with severely malformed arms and legs.