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National Health Care Institute sets up a Pan-European H2O Health Outcomes Observatory with international partners

News item | 09-02-2022 | 09:00

The Health Outcomes Observatory (H2O) consortium members are delighted to announce their collaboration with the Dutch National Health Care Institute, The Danish Medicines Agency, Danish Health Data Authority and Aarhus University Hospital to set up the Pan-European H2O Health Outcomes Observatory, a virtual ‘hub’ for the collation and sharing of Patient Reported Outcomes (PROs) with patients, providers, regulators and healthcare decision-makers.

The picture shows the logo of H2O - Health Outcomes Observatory, with a white background with gray dots and in front the name in blue letters and a drop of water made out of little blue dots in different sizes and shades.
Image: ©Dutch Health Care Institute

Vital step towards achieving the mission of the H2O

This is a vital step towards achieving the mission of the H2O; to establish standardized outcomes sets, so clinicians and patients can speak the same ‘language’, thereby strengthening the voice of patients and informing and enriching shared decision making in healthcare delivery across Europe as well as informing health technology assessment.

Role pan-European Observatory

The pan-European Observatory will lead on:

  • Implementation of outcome standards for measuring PROs in a way which is practical and simple to apply within clinical practice.
  • Establishing governance principles for H2O, such as data governance, design of the overall network architecture and technology platform and sustainability as a not-for-profit Enterprise.
  • Holding metadata (not identifiable patient data) securely and ethically.

“We are delighted to be appointed to this role within H2O. The Danish Medicines Agency, like all Medicines Agencies, is interested in bringing forth the patient voice. This is an important step in that direction. We are particularly impressed by the Pan-European scope of this project, as it expands the gathering of PROs and sharing of insights to an international level,” said Jesper Kjær, Head of The Danish Medicines Agency’s Data Analytics Centre.

Diana Delnoij, Chief Scientific Officer, Dutch National Healthcare Institute adds: “Shared decision making is intimately embedded in the Dutch healthcare system and closely linked to our effort to keep the standard health insurance package accessible for everyone in the Netherlands. Outcomes data is vital for shared decision making. Preferably real time, and from validated sources, as intended by H2O. We are also highly intrigued by the idea of using data from the H2O project for HTA assessments. Once a drug is on the market it would be great to be able to follow up with the use of international outcomes data."

National H2O Observatories

The H2O expects to be shortly announcing National H2O Observatories; independent data repositories for PROs with links to national hospitals where standardized clinically captured outcomes are being hosted, as well as the managers of patient identifier system in collaboration with partner hospitals.