GOSH collaborating in pioneering PHEMS project to revolutionise use of health data across Europe

In 2023, a consortium led by HUS Helsinki University Hospital received significant EU funding for developing data collaboration between European Children’s Hospitals in a way that protects patient information. This will help the development of new therapies for children, the assessment of care outcomes and the advancement of new technology such as artificial intelligence in healthcare for children.

The project started in October 2023 and will go on until September 2026. It has been awarded a total funding of €7m from the Horizon Europe programme and from the UK research funding agency, UK Research and Innovation.

The PHEMS project’s aim is to overcome important barriers that currently hinder collaboration on health data between different countries by developing and validating a decentralised health data ecosystem. A“decentralised data ecosytem” is a data environment that enables the analysis of health data across different hospitals, while the data remains in its original location. This means that each hospital will continue to maintain authority of their own patient data, ensuring compliance with EU General Data Protection Regulation (GDPR) and other national laws.

PHEMS will use the cutting-edge technique of synthesising and anonymising data to ensure that researchers and innovators can access vital information while fully protecting patient confidentiality. This innovation overcomes the traditional barriers to data sharing, paving the way for a new era of secure, yet accessible health data.

Katariina Gehrmann, Director of Digital and Innovation Services at HUS New Children’s Hospital said, “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”

To achieve this, the project will develop new technological solutions that allow authorised access to health data at multiple locations and advances federated health data analysis. The project will also develop shared rules and governance structures, which allow new partners to join and new datasets to be included in the ecosystem, all while maintaining patient privacy.

Katarina added “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”

The Consortium consists of six leading European children’s hospitals from the European Children's Hospital Organization (ECHO) community and leading-edge technical partners. The ECHO community advocates for children’s health and their access to the best quality care through the collaborative work of children’s hospitals.

GOSH are participating in work across the project and are leading the first clinical use case to benchmark the operational management of cardiology patient pathways in four hospitals, using a standardised data model known as OMOP (Observational Medical Outcomes Partnership).

“GOSH is an international centre of excellence and with our first-of-its kind Data Research, Innovation and Virtual Environments unit (DRIVE) we are one of the most digitally advanced hospitals in Europe. It is exciting and a real testament to our digital maturity that we are in a position to be part of this project. Working with the other leading European paediatric hospitals, we strive to advance data collaboration to enhance healthcare services for children across Europe, whilst ensuring privacy of patient data.” - Professor Andrew Taylor, Director of Innovation GOSH

The consortium hospital partners are HUS Helsinki University Hospital (Finland), Erasmus Universitair Medisch Centrum Rotterdam (Netherlands), Azienda Ospedaliero-Universitaria Anna Meyer in Florence (Italy), Hospital Sant Joan de Déu in Barcelona (Spain), Great Ormond Street Hospital for Children in London (United Kingdom), Bērnu klīniskā universitātes slimnīca (Latvia) In addition to Childrens’ Hospitals, the PHEMS consortium includes technology partners: Tieto Finland Oy (Finland), Aridhia Informatics Limited (UK) and VEIL.AI Oy (Finland) and two professional services partners: The Hyve B.V. (Netherlands) and Genesis Biomed (Spain).

For more information on the PHEMS project and GOSH’s involvement, visit https://phems.eu/