Project information

  • Full title: Health Outcomes Observatory (H2O)
  • Duration: 1 October 2020 to 30 September 2025; 60 months
  • Status: Ongoing
  • Funding programme: Innovative Medicines Initiative 2 (IMI2; Grant Agreement 945345)

What will the project do?

  • The Health Outcomes Observatory (H2O) project will aim to set-up patient-centric pan-European and national observatories to amplify the patient voice in their own healthcare and in healthcare systems more broadly.

What are the expected outcomes?

  • The project will establish health outcomes observatories in four countries – Germany, Spain, Austria and the Netherlands, - and will cover three disease areas - diabetes, inflammatory bowel disease, and cancer.
  • The observatories will work by providing patients with digital tools to report their health outcomes in standardised ways, and remain in control of their data and who can access it.
  • Ultimately, the project aims to engage patients and connect providers, thereby equipping different stakeholders with the necessary data to improve patient care.
  • In the longer term, the aim is that more observatories, covering a wider range of disease areas, will open up across Europe.

What is EPFs role?

  • EPF will contribute a strong patient perspective by bringing on board patient advisory boards as the cornerstone of our contribution to the project. Together with the expertise of these patients, we will ensure that there is a strong patient perspective, and that patients are consulted throughout.

Why does this matter for patients?

  • Often, the way diseases (and disease outcomes) are measured is largely based on input from clinicians.
  • Because of this, these measurements (or outcomes) do not necessarily include the experiences of the patient, and the impact of a disease on their life.
  • The aim of this project is to create a framework that incorporates and amplifies the patient voice both in their own healthcare and in healthcare systems more broadly.
  • By creating this framework, H2O hopes to improve the dialogue between patient and doctor, so that patients receive better care; improve healthcare professional’s access to data to inform their clinical decisions; and ultimately improve the quality and sustainability of care based on outcomes that truly matter to patients.

The consortium:

  • The consortium is composed of 23 partners.
  • Including universities, research organisations, biotech companies, public bodies and non-profit groups, biotech companies, small and medium sized companies, and organisations representing the patients’ voice.
    • Medizinische Universitaet Wien, Vienna, Austria
    • Takeda Pharmaceuticals International AG, Glattpark-Opfikon (Zurich), Switzerland 
    • Eli Lilly And Company Limited, Basingstoke, United Kingdom
    • F. Hoffmann-La Roche AG, Basel, Switzerland
    • Medtronic International Trading SARL, Tolochenaz, Switzerland
    • Novartis Pharma AG, Basel, Switzerland
    • Pfizer Limited, Sandwich, Kent , United Kingdom
    • Sanofi-Aventis Recherche & Developpement, Chilly Mazarin, France
    • Charite - Universitaetsmedizin Berlin, Berlin, Germany
    • Erasmus Universitair Medisch Centrum Rotterdam, Rotterdam, Netherlands
    • European Patients’ Forum, Brussels, Belgium
    • Institut Catala De La Salut, Barcelona, Spain
    • Katholieke Universiteit Leuven, Leuven, Belgium
    • King's College London, London, United Kingdom
    • Region Stockholm, Stockholm, Sweden
    • Stichting Integraal Kankercentrum Nederland, Utrecht, Netherlands
    • The European Institute For Innovation Through Health Data, Gent, Belgium
    • Universita Vita-Salute San Raffaele, Milano, Italy
    • Team - It Research SL, Barcelona, Spain
    • The Hyve BV, Utrecht, Netherlands
    • Jdrf International, New York, United States
    • Trial Nation, Copenhagen, Denmark
    • Abbvie Inc, North Chicago, Illinois, United States

To learn more about the project, visit the website and social media profile: