GOSH–DRIVE Digital Research Environment for secure cloud-based health data management, FHIR-based interoperability and auditable analytics is a platform for research and advanced cognitive services (AI) development.
This project is funded by the UK Research and Innovation’s Industrial Strategy Challenge Fund (ISCF).
Great Ormond Street Hospital (GOSH), a specialist children’s centre, has established a digital research unit to improve child health by optimising the use of clinical data for research. This project will show how routinely collected, non-identifiable data can be used and tracked through the complete research cycle.
Specifically, we will show how new ways of storing and transmitting health data (something called ‘Fast Healthcare Interoperability Resources – FHIR) can benefit health research by improving data sharing. This project will also facilitate the development of healthcare ‘apps’ for patients, families and healthcare professionals that have the potential to revolutionise the way we deliver services. Throughout the project, data is collected, accessed, and used in a safe and secure manner within GOSH governance. Better availability of health data will support research across NHS organisations and benefit patients and clinical staff by improving knowledge, communication and healthcare management. Safe access to data will also support future developments such as artificial intelligence, without personal data needing to be being shared.
Most health data that is routinely collected is difficult to use for research, and is not easily shared with other NHS services. The majority of hospitals collect and store identifiable patient data in numerous disparate systems making the sharing of de-identified data for research a challenge. A common set of standards for data collection and format for data sharing alongside a robust system for de-identification would significantly increase the value of routine data for research purposes.
This project will develop and demonstrate a working exemplar of the complete health data ‘research cycle’ at GOSH (including metadata cataloguing, ontology mapping, deidentification, open-source reusable analytics, data auditability and reporting) using a cloud-based digital research environment and an example disease entity.
Specifically, we will use the dedicated, secure research platform and a common standard for data mapping (FHIR). We will also demonstrate that applications can be rapidly developed to use with this type of data (SMART apps) both for patients and clinicians.
Developing this using cloud-based (Azure) architecture will show that a similar approach could scale and help future technologies such as machine learning.
Impact and outcomes
The development of common data standards and format, using freely available open source components and public cloud architecture will provide a way of both rapid and reliable, data sharing. This process will be fully auditable and will support research across all areas of medicine. Furthermore, having the ability to develop SMART apps which can read these data would have a direct and immediate impact on functionality for patients and doctors across the health service, both in clinical care and research.
Risk of blood clots remains for almost a year after COVID-19 infection, study suggests
20 September 2022
COVID-19 infection increases the risk of potentially life-threatening blood clots for at least 49 weeks, according to a new study of health records of 48 million unvaccinated adults from the first...
The HDR UK Phenotype Library celebrates reaching 1000 phenomes
30 August 2022
The milestone marks the Library as the largest national resource for information, tools and phenotyping algorithms to allow researchers to harness data held in Electronic Health Records.
Global digital health leaders propose framework to enhance research using real-world data
29 August 2022
Researchers from HDR UK Midlands and BHF Data Science Centre part of international group proposing new framework to improve the integrity and quality of studies using healthcare data, and boost...