Limitations for health research with restricted data collection from UK primary care

Abstract

Purpose UK primary care provides a rich data source for research. The impact of proposed data collection restrictions is unknown. This study aimed to assess the impact of restricting the scope of electronic health record (EHR) data collection on the ability to conduct research. The study estimated the consequences of restricted data collection on published Clinical Practice Research Datalink studies from high impact journals or referenced in clinical guidelines. Methods A structured form was used to systematically analyse the extent to which individual studies would have been possible using a database with data collection restrictions in place: (1) retrospective collection of specified diseases only; (2) retrospective collection restricted to a 6‐ or 12‐year period; (3) prospective and retrospective collection restricted to non‐sensitive data. Outcomes were categorised as unfeasible (not reproducible without major bias); compromised (feasible with design modification); or unaffected. Results Overall, 91% studies were compromised with all restrictions in place; 56% studies were unfeasible even with design modification. With restrictions on diseases alone, 74% studies were compromised; 51% were unfeasible. Restricting collection to 6/12 years had a major impact, with 67 and 22% of studies compromised, respectively. Restricting collection of sensitive data had a lesser but marked impact with 10% studies compromised. Conclusion EHR data collection restrictions can profoundly reduce the capacity for public health research that underpins evidence‐based medicine and clinical guidance. National initiatives seeking to collect EHRs should consider the implications of restricting data collection on the ability to address vital public health questions.

Protracted armed conflict and maternal health: a scoping review of literature and a retrospective analysis of primary data from northwest Syria

“…These data were collected during active conflict, therefore, there may be inaccuracy in recording, missing data or misdiagnosis due to inadequate resources or experienced staff. Furthermore, as is common in many humanitarian settings with restrictions to data collection58 59 it is not possible to analyse certain maternal health parameters, however, this work remains an important addition to the literature looking at underage pregnancies and caesarean sections in conflict settings. The changes to presentations to facilities as a result of episodes of increased conflict or other factors which influence healthcare access may also falsely skew the data.…”

Changing co‐morbidity and increasing deprivation among people living with HIV: UK population‐based cross‐sectional study

“…The downward trend was also observed in a study among PLHIV in England, Wales and Northern Ireland (combined). [30] Limitations and strengths Data from CPRD, established in 1987 and supported today by the UK's Medicines and Healthcare products Regulatory Agency and the National Institute for Clinical Excellence, are widely held as generalizable populationwide and have supported over 2000 published studies to date, many incorporating HES linkages [31,32]. The CPRD data have been used to study HIV testing rates and, recently, to study PLHIV more broadly.…”

Identifying primary care datasets and perspectives on their secondary use: a survey of Australian data users and custodians

“…Consequently, there is no comprehensive primary care data repository in Australia [ 27 , 28 ]. This differs from the UK and the Netherlands, for example, where primary care data has long been routinely collected from clinicians’ EMRs and used for secondary purposes [ 10 , 11 ] and where governments are taking steps to prompt interoperable clinical data collection tools [ 34 , 35 ].…”