News, NHS trust

GOSH joins consortium of children’s hospitals to collaborate on decentralised data ecosystem

Great Ormond Street Hospital (GOSH) has announced that it is part of a consortium of six leading European children’s hospitals, who will be working together to advance research on children’s health, collaborating on data management to develop new therapies for children and support new technologies such as AI in healthcare for children.

The project, titled “Paediatric Hospitals as European drives for multi-party computation and synthetic data generation capabilities across clinical specialities and data types” (PHEMS), aims to create a decentralised data ecosystem, that can “enable the analysis of health data across different hospitals”, whilst still allowing each hospital to maintain authority over their own patient data in line with EU GDPR and national laws.

Other hospital partners include HUS Helsinki University Hospital in Finland, Erasmus Universitair Medisch Centrum Rotterdam in The Netherlands, Azienda Ospedaliero-Universitaria Anna Meyer in Italy, Hospital Sant Joan de Déu in Spain, and Bērnu klīniskāuniversitātes slimnīca in Latvia.

Using “the technique of synthesising and anonymising data” to provide researchers with access to information without compromising patient confidentiality, the project aims to develop new solutions, along with shared rules and governance structures, which will allow new partners to join and new datasets to be introduced in the future.

As part of the project, GOSH is leading the “first clinical use case to benchmark the operational management of cardiology patient pathways in four hospitals”, using a standardised data model OMOP (Observational Medical Outcomes Partnership).

Launched in October 2023, the project has received €7 million in funding from the Horizon Europe programme and the UKRI, and is set to continue to September of 2026.

Katariina Gehrmann, director of digital and innovation services at HUS New Children’s Hospital, commented: “We will enable European collaboration on health data by aligning ethical and legal requirements of leading European paediatric hospitals with the needs of data users. This ensures that researchers can benefit from rich datasets and advance scientific research in paediatrics while the patient’s rights and data privacy remain protected. One challenge with algorithmically anonymised and synthesised datasets is the lack of evidence on their validity and utility for real-world needs in research or healthcare management. Therefore, we shall perform studies on three clinical use cases and aim to generate evidence in different clinical areas and in the management of healthcare operations.”

In other news from GOSH, the hospital has released a report which marks five years since the launch of its Data Research, Innovation and Virtual Environments (DRIVE) unit in 2018, highlighting how the unit has supported more than 300 data research projects over the last five years, and has “captured over 100 ideas from GOSH staff and connected innovators across the NHS, life sciences and technology industry and academia” in the last 18 months.