IDERHA

Integration of heterogeneous data and evidence towards regulatory and HTA acceptance

Summary

Recent years have seen an explosion in the generation of health data from sources as diverse as digital technologies, patient-reported outcome measures, clinical trials, and routine clinical care. This data has the potential to help advance both research and patient care. However, accessing, integrating and analysing it is extremely challenging.

The aim of IDERHA is to set up an open platform that will facilitate the integration and analysis of diverse types of health data. The platform will link up multiple public and private data sources and put in place interoperable tools and services that will make it possible for key groups to use the data. For example, doctors and patients would be able to use the platform to visualise all the data relating to a patient and make decisions for their care. Meanwhile researchers would be able to use it to study diseases in unprecedented detail.

To focus their efforts, the IDERHA team will use lung cancer as a use case to design the platform. Lung cancer is responsible for some 400 000 deaths in Europe every year, around 20 %of all cancer deaths. The 5-year survival rate for lung cancer stands at just 13 %. One reason for this is that over half of all lung cancer patients are only diagnosed when the disease is already at an advanced stage. One of IDERHA’s tasks will be to use existing data to identify people who may be at high risk of developing lung cancer. It will then seek to accurately assess these people’s risk via low dose CT (computed tomography) scans.

Turning to people who have been diagnosed with lung cancer, IDERHA will use remote technologies such as wearables and digital applications to monitor their condition. Remote technologies capture far more detailed information, in real time, on a patient’s condition, as they go about their daily lives. This will make it easier for patients and their doctors to monitor things such as how well a treatment is working, or if there are any complications. This will allow for quicker decisions on any changes to the patient’s care pathway that may be needed. Finally, the project will make high quality lung cancer data available for further research.

The project will also work closely with patients and other health stakeholders to develop recommendations for appropriate data sharing to enable multi-stakeholder research.

The IDERHA platform will be fully compliant with both current and forthcoming legislation relating to health data, including the European Health Data Space (EHDS). It will empower patients, allowing them to decide for themselves who can access their data. Researchers will benefit from long-term access to health data, making it possible for them to generate new insights into health and disease. Data in the platform could also be valuable for regulators and health technology assessment bodies who could use it for their own decision-making processes.

Participants

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Universities, research organisations, public bodies, non-profit groups
  • Fachhochschule Technikum Wien, Wien, Austria
  • Fraunhofer-Gesellschaft zur Förderung der angewandten Forschung e.V., München, Germany
  • Fundacion Para La Investigacion Del Hospital Universitario La Fe De La Comunidad Valenciana, Valencia, Spain
  • Klinikum Rechts Der Isar Der Technischen Universitat Munchen, Muenchen, Germany
  • Laegemiddelstyrelsen, Kobenhavn S, Denmark
  • Ludwig Boltzmann Gesellschaft Osterreichische Vereinigung Zur Forderung Der Wissenschaftlichen Forschung, Wien, Austria
  • Medizinische Universitaet Wien, Vienna, Austria
  • National Institute For Health And Care Excellence, Manchester, United Kingdom
  • Region Midtjylland, Viborg, Denmark
  • Servicio Andaluz De Salud, Sevilla, Spain
  • Servizo Galego De Saude, Santiago de Compostela, Spain
  • Teknologian Tutkimuskeskus Vtt Oy, Espoo, Finland
  • The European Institute For Innovation Through Health Data, Gent, Belgium
  • Universite Du Luxembourg, Esch-sur-Alzette, Luxembourg
Small and medium-sized enterprises (SMEs) and mid-sized companies (<€500 m turnover)
  • Hygiaso AG, Basel, Switzerland
  • Information Technology For Translational Medicine (Ittm) SA, Esch-sur-Alzette, Luxembourg
  • Msb Medical School Berlin GMBH, Berlin, Germany
  • Q1.6 BV, Antwerpen, Belgium
  • Stichting Lygature, Utrecht, Netherlands
Patient organisations
  • European Cancer Patient Coalition, Brussels, Belgium
  • European Respiratory Society, Lausanne, Switzerland
  • Forum Des Patients Europeens, 1040, Belgium
  • Lung Cancer Europe Luce, Bern, Switzerland
Third parties
  • Fundacion Para La Gestion De La Investigacion En Salud De Sevilla, Sevilla, Spain
  • Janssen-Cilag GMBH, Neuss, Germany
  • Janssen Cilag Limited, High Wycombe, United Kingdom
  • Medical Device Business Services Inc, Warsaw In, United States
Private companies
  • Asklepios Kliniken Hamburg GMBH, Hamburg, Germany
IHI industry partners
  • F. Hoffmann-La Roche AG, Basel, Switzerland
  • Janssen Pharmaceutica Nv, Beerse, Belgium
  • Janssen Vaccines & Prevention BV, Leiden, Netherlands
  • Johnson & Johnson Medical GMBH, Norderstedt, Germany
  • Johnson & Johnson Medical Nv, Machelen, Belgium
  • Labcorp Early Development Laboratories Limited, Harrogate, United Kingdom
  • Philips Medical Systems Nederland BV, Best, Netherlands
  • Sanofi-Aventis Recherche & Developpement, Chilly Mazarin, France
  • Takeda Pharmaceuticals International GmbH, Glattpark-Opfikon (Zurich), Switzerland

Participants
NameEU funding in €
Asklepios Kliniken Hamburg GMBH706 574
European Cancer Patient Coalition266 250
Fachhochschule Technikum Wien429 600
Forum Des Patients Europeens150 000
Fraunhofer-Gesellschaft zur Förderung der angewandten Forschung e.V.4 947 583
Fundacion Para La Investigacion Del Hospital Universitario La Fe De La Comunidad Valenciana887 146
Information Technology For Translational Medicine (Ittm) SA882 500
Klinikum Rechts Der Isar Der Technischen Universitat Munchen754 750
Laegemiddelstyrelsen553 000
Ludwig Boltzmann Gesellschaft Osterreichische Vereinigung Zur Forderung Der Wissenschaftlichen Forschung781 669
Medizinische Universitaet Wien608 431
Msb Medical School Berlin GMBH763 153
Philips Medical Systems Nederland BV1 361 900
Q1.6 BV434 459
Region Midtjylland947 500
Servicio Andaluz De Salud249 750
Servizo Galego De Saude773 936
Stichting Lygature2 130 759
Teknologian Tutkimuskeskus Vtt Oy793 145
The European Institute For Innovation Through Health Data887 000
Universite Du Luxembourg3 066 455
 
Third parties
NameFunding in €
Fundacion Para La Gestion De La Investigacion En Salud De Sevilla656 650
 
Total Cost23 032 210