The Good, the Bad, the Clunky

Introduction Administrative data arising via the operation of public service delivery systems hold great benefits for citizens and society providing they can be made available for research in a safe, socially-acceptable way. In recognition of this potential, the UK Administrative Data Research Network was established in 2013 to enable new research for public benefit. However, there are considerable challenges to be overcome for effective data use, and many of these are common to administrative data enterprises in general. Using this network as a practical case study, we set out to explore the challenges, and to share the ‘good’, suggest solutions to the ‘bad’, and improve the ‘clunky’ issues. Methods A qualitative survey replicating the data use pathway was carried out across the network, followed by a workshop to discuss the summarised findings and make further suggestions. This led to a set of recommendations to inform the development of an action plan for implementation. Results The survey respondents (N=27) and workshop participants (N=95) comprised multi‑disciplinary staff from across the network. The responses were summarised by consensus of three researchers and grouped into six areas: A) Data acquisition pathway; B) Approval processes; C) Controls on access & disclosure; D) Data and metadata; E) Researcher support; and F) Data reuse & retention, leading to an embedded set of 18 recommendations. Key developments promoted by this study were the development of themed research partnerships to progress data acquisition, and a policy of data retention and reuse for research. Conclusion The network has broken new ground in using administrative data for research. This study has enabled the development of an evidence-based action plan to address many challenges in the effective use of administrative data. It represents a practical worked example, widely relevant to enterprises working with administrative data across the world. Keywords Administrative data research, data access, data linkag

Childhood asthma prevalence: cross-sectional record linkage study comparing parent-reported wheeze with general practitioner-recorded asthma diagnoses from primary care electronic health records in Wales

Introduction Electronic health records (EHRs) are increasingly used to estimate the prevalence of childhood asthma. The relation of these estimates to those obtained from parent-reported wheezing suggestive of asthma is unclear. We hypothesised that parent-reported wheezing would be more prevalent than general practitioner (GP)-recorded asthma diagnoses in preschool-aged children. Methods 1529 of 1840 (83%) Millennium Cohort Study children registered with GPs in the Welsh Secure Anonymised Information Linkage databank were linked. Prevalences of parent-reported wheezing and GP-recorded asthma diagnoses in the previous 12 months were estimated, respectively, from parent report at ages 3, 5, 7 and 11 years, and from Read codes for asthma diagnoses and prescriptions based on GP EHRs over the same time period. Prevalences were weighted to account for clustered survey design and non-response. Cohen’s kappa statistics were used to assess agreement. Results Parent-reported wheezing was more prevalent than GP-recorded asthma diagnoses at 3 and 5 years. Both diminished with age: by age 11, prevalences of parent-reported wheezing and GP-recorded asthma diagnosis were 12.9% (95% CI 10.6 to 15.4) and 10.9% (8.8 to 13.3), respectively (difference: 2% (−0.5 to 4.5)). Other GP-recorded respiratory diagnoses accounted for 45.7% (95% CI 37.7 to 53.9) and 44.8% (33.9 to 56.2) of the excess in parent-reported wheezing at ages 3 and 5 years, respectively. Conclusion Parent-reported wheezing is more prevalent than GP-recorded asthma diagnoses in the preschool years, and this difference diminishes in primary school aged children. Further research is needed to evaluate the implications of these differences for the characterisation of longitudinal childhood asthma phenotypes from EHRs