ISCF HDRUK DIH Sprint Exemplar: GOSH–DRIVE Digital Research Environment for secure cloud-based health data management, FHIR-based interoperability and auditable analytics; a platform for research and advanced cognitive services development

Great Ormond Street Hospital, a specialist children’s centre, has established a digital research unit, including NHS clinicians, UCL academics and industry partners. Our aim is to improve child health by optimising the use of clinical data for research.
This project will demonstrate how routinely collected, non-identifiable patient data can be used and tracked through the complete research cycle. We will take advantage of cloud-platforms and new technology (‘Fast Healthcare Interoperability Resources’ ;FHIR) for the collection and safe handling of healthcare data. This approach will support the development of various healthcare ‘apps’, for patients, families and healthcare professionals, similar to existing phone apps used regularly by millions.
Throughout this project, data is collected, accessed, and used in a safe and secure manner. The development of SMART apps does not require access to personal data while FHIR infrastructure can make health data available, irrespective of the IT system used by the organisation. The availability of health data will support research across NHS organisations that will directly benefit patients and clinical staff by improving knowledge, communication and healthcare management, and will support future developments such as artificial intelligence, without personal data being shared with technology companies that can provide these services.

The Great Ormond Street Hospital Digital Research and Informatics Unit (DRIVE) has recently been established, including deployment of a secure, cloud-based digital research environment (DRE) for the collection, deidentification, audit and analysis of current and future healthcare-related data within a governance structure which meets HRA, ICO and GDPR compliance.
This project will demonstrate proof of principle of the complete data research cycle including metadata cataloguing, ontology mapping, deidentification, open source reusable analytics, data auditability and reporting. In addition, working with SME (Aridhia) partners to leverage existing global cloud technology (Azure), in addition to academia (UCL Institute of Child Health), we will develop and demonstrate usage of FHIR infrastructure with SMART-app deployment as proof of principle for interoperable patient and clinician-facing apps to support a future extensible research data infrastructure.
The project therefore provides a working example with real world evidence addressing the majority of the proposed elements for the future digital innovation hubs in addition to supporting accelerated development of a novel technology for scaling healthcare related research using interoperable data standards. Finally, through the cloud-based (Azure) architecture we will demonstrate future scalability and leveraging of such interoperable and auditable data through application of cognitive services.