H2O is a five-year project (Oct. 2020- Sept. 2026) which strives to empower patients with digital tools to monitor their outcomes in a standardized manner. Patients can share these data with their physicians and other healthcare providers to facilitate communication in an evidence-based, structured manner. In this way, they will be better able to collaborate with their treating clinicians in making joint healthcare and treatment decisions to obtain the best possible health outcomes.

Additionally, collecting patient-reported outcomes in a standardized way can, when the data are anonymized and aggregated, be used to help health systems learn how to provide the best, most efficient care possible to all patients. Aggregated health outcomes data at a national or European level can be a valuable resource for public health and clinical research.

In order to safeguard patients’ health data, the highest level of integrity and data security will be ensured, by only communicating aggregate data and not patient level data, while at the same time enabling greater transparency of outcomes to allow better decision making for both individual patient treatments as well as health system design.

i~HD is a work package co-leader working with colleagues especially on the governance model and sustainability of the planned H2O outcomes observatories, on multistakeholder engagement and consensus building, and on information governance including GDPR compliance.

H2O is funded through the Innovative Medicines Initiative. The consortium brings together patient groups and the best of breed health outcomes generation ecosystem, as well as experts in data standards and quality, psychometric methods, federated networks, governance, business modelling and IMI experience.

Medizinische Universität Wien, Charité – Universitätsmedizin Berlin, Erasmus University Medical Center, Institut Català de la Salut – Hospital Universitari Vall d’Hebron, King’s College Hospital, Katholieke Universiteit Leuven, European Patients’ Forum, The European Institute for Innovation through Health Data (i~HD), The Hyve, Teamit Research, Karolinska University Hospital, Vita-Salute San Raffaele University, Netherlands Comprehensive Cancer Organisation, Takeda Pharmaceuticales International AG, Novartis Pharma AG, Abbvie INC, Eli Lilly and Company Limited, Medtronic International Trading SARL, Pfizer Limited, F. Hoffmann-La Roche Ltd, Sanofi-Aventis Recherche & Developpement, JDRF International (AP), Trial Nation (AP)