JMIR Publications

ABSTRACT

Background Routinely recorded primary care data have been used for many years by sentinel networks for surveillance. More recently, real world data have been used for a wider range of research projects with the anticipation they could be used to support rapid, lower cost clinical trials. Much larger numbers of general practices are required to deliver effective surveillance and in-pandemic trials, given the partial national lockdown has resulted in falling community disease incidence. Aim To describe the rapid design and development of the Oxford Royal College of General Practitioners Clinical Informatics Digital (ORCHID) Hub, and its first two platforms. The Surveillance Platform will provide extended primary care surveillance, while the Trials Platform will be a streamlined clinical trials platform integrated into routine primary care practice. Methods We will apply the FAIR (Findable, Accessible, Interoperable and Reusable) metadata principles to a new, unique, integrated digital health hub, combining routinely collected electronic health date from UK general practice. The hub will be findable through membership of Health Data Research UK and European metadata repositories. Accessibility through an online application system will allow study-ready datasets to be accessed or custom datasets developed. Interoperability will be facilitated by fixed linkage to other key sources such as Hospital Episodes Statistics and the Office of National Statistics using pseudonymised data. All semantic descriptors (i.e. ontologies) and code used for analysis will be made shareable, to accelerate analyses. We will also make data available using common data models starting with the FDA Sentinel and OMOP approaches to facilitate international studies. Ethics The hub will be a bottom-up, professionally led network ensuring benefits for member practices, our health service and the population served. Data will only be used for SQuIRE (surveillance, quality improvement, research and education) purposes. The Surveillance Platform will provide access to data for health protection and promotion work as authorised through agreements between Oxford, the Royal College of General Practitioners and by Public Health England. All studies using the Trials Platform will have gone through appropriate ethical and other regulatory approval.