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Synthetic healthcare data governance hub

Summary

Aggregating and analysing health data from diverse sources could deliver exciting new insights into diseases and lead to the development of new treatments. However, those responsible for databases of health data are understandably wary of sharing it due to security and privacy concerns.

But what if we could draw on these databases to generate synthetic data which can be shared without triggering privacy concerns? As the name suggests, synthetic data is data which has been created artificially to mimic real patient data. However, generating synthetic data that genuinely reflects a real population and cannot be traced back to real life individuals is not easy, and that’s where the SEARCH project comes in.

The aim of SEARCH is to develop an innovative biomedical data generation and sharing solution as well as generalisable methodologies for generating and validating synthetic data. The project will use new models to create realistic synthetic replicas of diverse types of healthcare data, including data types that are often missing from synthetic data sets, such as wearable device data, image sequences, and genomic data. The project will also deliver a framework for assessing the anonymity and credibility of synthetic data, with the long-term goal of facilitating the use of synthetic data in regulatory and health technology assessment (HTA) settings, for example.

The project will focus on three disease areas: gastrointestinal diseases (including cancer, chronic inflammatory and rare bowel diseases); cardiovascular diseases (including atrial fibrillation and stroke); and gynaecological diseases (namely cervical cancer and ovarian cancer). The synthetic datasets generated in these areas will be used to create tools designed to help in the diagnosis and care of these diseases.

The synthetic data, and the models that generated it, will be made available to the research community according to the FAIR (findable, accessible, interoperable, reuseable) principles. Furthermore, a hybrid approach using data clean rooms and federated learning will enable data to be analysed without requiring it to be shared and allow insights to be drawn across multiple datasets while keeping patient information securely stored at its source. Together, these innovations could radically reshape the future of health data sharing and research, driving innovation progress in healthcare tools without compromising privacy.

Participants

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Universities, research organisations, public bodies, non-profit groups
  • Fundacio De Gestio Sanitaria De L'Hospital De La Santa Creu I Sant Pau, Barcelona, Spain
  • Fundacio Ticsalut, Barcelona, Spain
  • Fundacion Tecnalia Research & Innovation, Donostia/San Sebastian (Gipuzkoa), Spain
  • Kobenhavns Universitet, Copenhagen, Denmark
  • Panepistimio Thessalias, Volos, Greece
  • Region Syddanmark, Vejle, Denmark
  • Simula Metropolitan Center For Digital Engineering As, Oslo, Norway
  • Trinity College Dublin, Dublin, Ireland
  • Västra Götalandsregionen, Vanersborg, Sweden
Small and medium-sized enterprises (SMEs) and mid-sized companies (<€500 m turnover)
  • Motilent Limited, London, United Kingdom
IHI industry partners
  • Amgen, Brussels, Belgium
  • Amgen Research (Munich) GMBH, Munchen, Germany
  • Dq Technologies AG, Zurich, Switzerland
  • Ibm Ireland Limited, Dublin, Ireland
  • Iqvia Rds Ireland Limited, Dublin 3, Ireland
  • Philips Medical Systems Technologies LTD, Haifa, Israel
  • Takeda Farmacéutica España S.A., Madrid, Spain
  • Takeda Pharmaceuticals International AG, Glattpark-Opfikon (Zurich), Switzerland
Contributing partners
  • Adaptit GMBH, Dusseldorf, Germany
  • Byte Computer Anonymi Viomichanikiemporiki Etaireia, Athina, Greece
  • Corsano Health BV, The Hague, Netherlands
  • Diagnostikon Kai Therapeftikon Kentron Athinon Ygeia Anonymos Etaireia, Marousi, Greece
  • Gioumpitek Meleti Schediasmos Ylopoiisi Kai Polisi Ergon Pliroforikis Etaireia Periorismenis Efthynis, Athina, Greece
  • Hemex Benelux, Leuven, Belgium
  • Linac-Pet S.A. Opco Limited, Limassol, Cyprus
  • Maggioli S.A, Santarcangelo Di Romagna, Italy
  • Medicalvalues GMBH, Karlsruhe, Germany
  • Syntheticus AG, Dietikon, Switzerland

Participants
NameEU funding in €
Adaptit GMBH215 000
Byte Computer Anonymi Viomichanikiemporiki Etaireia258 000
Corsano Health BV493 760
Diagnostikon Kai Therapeftikon Kentron Athinon Ygeia Anonymos Etaireia250 000
Fundacio De Gestio Sanitaria De L'Hospital De La Santa Creu I Sant Pau206 250
Fundacio Ticsalut206 250
Fundacion Tecnalia Research & Innovation499 981
Gioumpitek Meleti Schediasmos Ylopoiisi Kai Polisi Ergon Pliroforikis Etaireia Periorismenis Efthynis189 630
Hemex Benelux237 790
Ibm Ireland Limited600 600
Iqvia Rds Ireland Limited78 750
Kobenhavns Universitet206 250
Linac-Pet S.A. Opco Limited189 630
Maggioli S.A249 400
Medicalvalues GMBH251 756
Panepistimio Thessalias662 500
Philips Medical Systems Technologies LTD207 690
Region Syddanmark206 250
Simula Metropolitan Center For Digital Engineering As600 000
Trinity College Dublin1 883 226
Västra Götalandsregionen223 500
Total Cost7 916 213