Table 3 Example sources of routinely recorded non-clinical data
The Office for National Statistics (ONS) [38] Data access for clinical research: The ONS records individual-level mortality data and aggregate economic and societal statistics that may inform clinical and health economic analyses. Mortality data can be requested through application to the HSCIC DARS. Aggregate data can be accessed via services provided by ONS such as NOMIS [39] and Data for Neighbourhoods and Regeneration [40]. The smallest reported level is the Lower Layer Super Output Area (LSOA) consisting of a population of 1000–3000. Previous experience in clinical research: ONS mortality data have been accessed to measure mortality in retrospective and prospective studies [23] |
HM Revenue and Customs (HMRC) [41] Data access for clinical research: HMRC is the UK’s national tax authority and responsible for taxation including National Insurance and student loan repayments and the administration of tax credits, child benefit and statutory sick and maternity pay. Individual-level data on employment and tax contributions are recorded and likely to inform health and socioeconomic analyses. The HMRC Datalab provides a means to access de-identified, aggregate HMRC data for research. An application, once ‘approved researcher’ status has been gained, must benefit the listed functions of the HMRC. Previous experience in clinical research: There was no evidence of individual-level, HMRC data being accessed for clinical research in a scoping search performed in MEDLINE via OVID |
The Department for Work and Pensions (DWP) [42] Data access for clinical research: The DWP is responsible for welfare including the provision of state pensions, benefits and child maintenance. Individual-level data regarding employment and welfare are likely to inform health and socioeconomic analyses and de-identified, aggregate data are available for social research. Previous Experience in Clinical Research: There was no evidence of individual-level, DWP data being accessed for clinical research in a scoping search performed in MEDLINE via OVID |
The Driver and Vehicle Licensing Authority (DVLA) [43] Data access for clinical research: The DVLA is responsible for the licensing of drivers and vehicles in the UK and issuing, reviewing and maintaining guidance regarding driving licence status in the context of medical diagnoses. The legal requirement for driving licence holders to inform the DVLA of the occurrence of seizures and, subsequently, to regain normal driving privileges after a specified period of seizure freedom raises the possibility of DVLA providing an accurate data source to inform the clinical outcome measures in epilepsy research. Previous experience in clinical research: The DVLA publish limited de-identified, aggregate datasets for research, usually involving driving restrictions. There was no evidence of individual-level, DVLA data being accessed for clinical research in a scoping search performed in MEDLINE via OVID |