A global approach to improving trauma care: facilitating the establishment of trauma registries in developing (and developed) countries

Injury is a major problem, especially in developing countries. In some developed countries, systems of trauma care have led to a reduction in deaths and disability; trauma care quality improvement programs, informed by trauma registries, have been a major factor. Integrated trauma care systems, monitored by trauma care quality improvement programs and ideally informed by trauma registries, are a priority for developing countries. There has been a distinct lack of resources dedicated to guiding the establishment of successful and sustainable trauma registries globally. The aim of this thesis was to examine the pathways and challenges to trauma registry development and utilisation internationally. The framework was designed to determine the lessons learnt through trauma registry development, in both developed and developing countries, that may help to facilitate trauma registry activity globally. The activity of trauma registries was mapped globally, and by level of a source country’s development, using a review of the literature. The approaches to trauma registry methodology across both developing and developed countries were determined using a comprehensive literature review followed by a global survey of trauma registry custodians. To further explore the lessons learnt from trauma registries, across both developed and developing countries, a qualitative study using interviews and thematic analysis was employed. To examine the critical issue of data quality in trauma registries, a series of studies focused on the problem of missing data. A literature review was conducted to determine how data quality in trauma registries is classified, measured and improved. An observational study examined the impact of different methods of handling missing data on a measure of trauma system performance. Finally, the question of which patients are most likely to have missing data was studied using an observational design. This thesis demonstrated that the activity of trauma registries in developing countries is very limited. Trauma registry methods vary across levels of country development, particularly with regard to trained human resources, registry inclusion criteria, the number of variables for which data is collected, approaches to adjusting outcomes for injury severity, and how the registry is used. The key priorities for starting and sustaining a successful trauma registry were data quality, data utilisation and stakeholder buy-in. Of additional importance in developing countries was keeping things simple (e.g. number of variables) and the leadership of a local champion. Although data quality was identified as a top priority for trauma registry sustainability, its classification, measurement and improvement remains unclear. Varied approaches to dealing with missing data in a trauma registry can affect trauma system performance monitoring. Patients most likely to have missing data in a trauma registry can be identified; this information can be used to improve data quality at the data collection stage. The studies conducted for this thesis have led to an increased understanding of trauma registry resources, data methods and data quality. The lessons learnt can be used to inform key trauma care stakeholders, based in countries at various levels of development, on the steps necessary to start and sustain a successful trauma registry.