PHEMS project will advance data-driven research and innovation activities in pediatrics and the use of privacy-preserving datasets in Europe. The project’s aim is to overcome important barriers that currently hinder cross-border collaboration on health data by developing and validating a decentralized health data ecosystem. This will enable an ecosystem without central data repositories or release of sensitive personal health data from hospitals.

A consortium led by HUS Helsinki University Hospital has received significant EU funding for developing data collaboration between European Children’s Hospitals in a privacy-preserving manner. Progress in this area will help the development of new therapies for children, the assessment of pediatric care outcomes and the advancement of new technology solutions such as artificial intelligence in pediatrics. The project will start in October 2023 and go on until September 2026. It has been awarded a total funding of 7 M€ from the Horizon Europe programme and from the UK research funding agency.

“We will enable European collaboration on health data by aligning ethical and legal requirements of leading European pediatric hospitals with the needs of data users. This ensures that researchers can benefit from rich datasets and advance scientific research in pediatrics while the patient’s rights and data privacy remain protected” states Katariina Gehrmann, Director of Digital and Innovation Services at HUS New Children’s Hospital.

To achieve this, the project develops new technological solutions that facilitate authorized access to health data at multiple locations and advances federated health data analysis together with next-generation anonymization. In addition, the project develops shared rules and governance structures, which allow new partners to join and new datasets to be included in the ecosystem.

“One challenge with algorithmically anonymized and synthetized 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” continues Gehrmann.

The Consortium consists of six leading European pediatric hospitals from the European Children’s Hospital Organization (ECHO) community and of 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.

The consortium hospital partners are HUS Helsinki University Hospital (Finland), Erasmus Universitair Medisch Centrum Rotterdam (Netherlands), Meyer Children’s Hospital IRCCS in Florence (Italy), SJD Barcelona Children’s Hospital (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: Tietoevry 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).

GENESIS Biomed, a consultancy firm in the biomedical healthcare sector, will be in charge of designing the business model and exploitation plan. The ultimate goal is the economic sustainability of the data federation and that the ecosystem generated can persist after the end of the EU funding.