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For the first time, we will collect patient-reported data on the large scale in four European countries with a first focus on diabetes, inflammatory bowel disease, and cancer.
H2O is the first-ever attempt to collect and incorporate standardized patient outcomes into health care decision making – at an individual and population level – across multiple jurisdictions in Europe. The project’s objective is to collect patient-reported outcomes in a standardized way and use aggregated, anonymized data to define outcome-based values for health care intervention. Within two years, H2O will set up independent Observatories in Austria, Germany, The Netherlands, and Spain. Project partners convene today for a three-day virtual kick-off meeting. A highlight of the meeting will be a public webinar on 12 October with keynote speaker Dr. Maarten de Wit, longstanding patient advocate, Patient Research Partner, author, developer of Patient-Reported Outcome Measures and prior executive member of the European League Against Rheumatism.
23 world-leading institutions—including university hospitals, patient groups, and pharma industry—are joining together to design the health data infrastructure of the future. "Vall d'Hebron faces the challenge of leading, in the Catalan and European sphere, the change from a health system focused on quality indicators that are based on volume of activity and the transformation to a system that is focused on the results that really matters, which are those of improving the health and quality of life of patients ", explains Yolima Cossio, Director of Information Systems at Vall d'Hebron.
The H2O partnership is being led by the Medical University of Vienna and Takeda Pharmaceutical Company Limited (“Takeda”), and it has received funding from the Innovative Medicines Institute (IMI). IMI is the world’s biggest public-private partnership in life sciences, backed by the European Union and the European Federation of Pharmaceutical Industries and Associations (EFPIA).
The H2O project will provide patients digital tools to allow them to measure their outcomes in a standardized manner. This means that patients can then communicate with their physicians and other healthcare providers in an evidence-based, structured manner that resonates with scientists and gives physicians and patients deeper insights to help them align on the right course of action. Patients can download the app independently, allowing patients to use it also outside of the partner hospitals.
Patients will decide on the healthcare providers with whom that want to share their data. Patients, supported by their healthcare professionals, can then compare progress with aggregated data of other patients with similar health conditions. Aggregated data will be available to form the basis for new research and the development of innovative evidence-based treatments.
"H2O will give patients in Europe a more influential voice on medical decisions” said Professor Tanja Stamm, Head of the Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent Systems at the Medical University of Vienna. “For the first time, we will collect patient-reported data on the large scale in four European countries. We will unify the fragmented European outcome data to better serve patients and other stakeholders and initiate a more competitive outcomes research environment in Europe."
“H2O is about putting the patient voice at the core of health systems” said Meni Styliadou, Head of Public Policy & Sustainable Health, EUCAN at Takeda. “We are excited to provide the tools to improve individual care and create the evidence to support decision-making so that everyone in the health care system has the best possible outcome."
For Vall d'Hebron, "the two main pillars of this project are: the improvement of the health of the patient through the improvement of the care they receive and the improvement of the health system; and the learning of the tools that will allow us to improve the management of clinical data and interoperability at a European level", concludes Yolima Cossio.
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