The use of Routine Data in Health Research: an example from Palliative Care

Clinicians were aware that children with Life-limiting and Life-threatening conditions (LLC) were living longer, sometimes into adulthood but that good data on these young adults were not readily available. This study aimed to describe patterns of diagnoses in children and young adults with LLC using routinely collected data. The researchers were a multidisciplinary team comprising experts from medical, statistical and population geography backgrounds. After explaining the context for the research, this paper discusses the advantages and limitations of using routine data sources and how the multidisciplinary team has guided the specification of the work. Thereafter, this paper details elements relevant to the research including the data sources used, the identification of the population of interest and any necessary data cleaning followed by statements about the statistical measures used. The measures presented in the results were prevalence per 10,000 population by age, sex, diagnostic group, ethnicity and deprivation using a secondary analysis of Hospital Episode Statistics and populations at risk. The research team all contributed to the interpretation of the results and the writing of the manuscript. During this phase the team considered which would be an appropriate journal and this was informed by discussing the target audience. It was also useful to reflect on what the main messages of the research would be and this was achieved by discussing findings with stakeholders.