First ‘observatory’ for exchange of healthcare data at European level in the Netherlands
Rotterdam, 15 August 2022 – In an important milestone for the European H2O project the Dutch observatory facilitating the exchange of outcome-based care data at the European level has been officially established.
The two initiators, Erasmus MC and Takeda Netherlands, signed the founding act of the Dutch observatory on Friday, 22 July 2022. After two successful roundtables in the Netherlands and international publication of the outcome sets, the H2O project has thus reached another important milestone within the Netherlands.
H2O Netherlands is an independent non-profit association that will make outcome-based healthcare data accessible to all interested parties who have ethical and social reasons for this access. The establishment of the H2O association makes it possible to realize the exchange of outcome-based healthcare data within Europe. In this process, H2O Netherlands works closely together with patients, care providers, research institutes, the pharmaceutical industry, regulators and others who prioritise value-based decision-making in healthcare.
H2O stands for the Health Outcomes Observatory project. Within this project, both public and private parties across Europe work together to set up an infrastructure for value-driven outcome-oriented healthcare data. Clinical data and patient-reported data come together and are brought back to the patient and the care provider via dashboards – for better shared decision-making, for example. This is the first time this has been done on an European level. H2O is starting by setting up observatories in four countries: Spain, Austria, Germany and the Netherlands and covering three disease states: cancer, diabetes and IBD (chronic inflammatory bowel disease). The intention is to scale this up to many more diseases and many more countries in the future.
The board of H2O Netherlands is formed by Linetta Koppert and Anouk Neureiter di Torrero (Erasmus MC) and Jolanda Koenders and Marc Broeren (Takeda Netherlands) and has diverse representation from the different stakeholder groups within the H2O NL Supervisory Board.
“All too often it is not clear whether a medical treatment or drug actually contributes to someone’s quality of life. H2O Netherlands wants to address this by facilitating the digital exchange of health data and making it visible for both patients and healthcare providers. For the 1 million Dutch patients with one of the many rare disorders, quality-of-life data can only be obtained through international collaboration. As part of a European network, H2O NL can also lead to better quality of care for these disorders.”
— Dr. Cor Oosterwijk, director VSOP (VSOP national patient alliance for rare and genetic disorders) and member of the H2O NL Supervisory Board.
“Shared decision making based on outcomes that really matter to the patient, not only contributes to the patient’s quality of life but also increases the care professional’s job satisfaction. H2O facilitates this process and makes it possible to organize care based on the wishes and needs of the patient, with the patient really in control.”
— Prof. Dr. Mieke Hazes, director of quality and patient care within Erasmus MC and chair of the H2O Netherlands Supervisory Board.
More information can be found on the H2O website: health-outcomes-observatory.eu/nl/