Using routine primary care data in research: (in)efficient case studies and perspectives from the Asthma UK Centre for Applied Research

Aim We aimed to identify enablers and barriers of using primary care routine data for healthcare research, to formulate recommendations for improving efficiency in knowledge discovery. Background Data recorded routinely in primary care can be used for estimating the impact of interventions provided within routine care for all people who are clinically eligible. Despite official promotion of ‘efficient trial designs’, anecdotally researchers in the Asthma UK Centre for Applied Research (AUKCAR) have encountered multiple barriers to accessing and using routine data. Methods Using studies within the AUKCAR portfolio as exemplars, we captured limitations, barriers, successes, and strengths through correspondence and discussions with the principal investigators and project managers of the case studies. Results We identified 14 studies (8 trials, 2 developmental studies and 4 observational studies). Investigators agreed that using routine primary care data potentially offered a convenient collection of data for effectiveness outcomes, health economic assessment and process evaluation in one data extraction. However, this advantage was overshadowed by time-consuming processes that were major barriers to conducting efficient research. Common themes were multiple layers of information governance approvals in addition to the ethics and local governance approvals required by all health service research; lack of standardisation so that local approvals required diverse paperwork and reached conflicting conclusions as to whether a study should be approved. Practical consequences included a trial that over-recruited by 20% in order to randomise 144 practices with all required permissions, and a 5-year delay in reporting a trial while retrospectively applied regulations were satisfied to allow data linkage. Conclusions Overcoming the substantial barriers of using routine primary care data will require a streamlined governance process, standardised understanding/application of regulations and adequate National Health Service IT (Information Technology) capability. Without policy-driven prioritisation of these changes, the potential of this valuable resource will not be leveraged.