In close consultation with the health care and research field, Dutch Minister of Medical Care and Sports Bruno Bruins has developed a vision how data can be employed to serve health. November 15th, he has shared his vision with the Dutch Parliament.
In his letter to the Parliament Bruins writes: “Employing data for health needs trust. The patient must be able to trust that his/her data will be treated carefully, and the health professional should be able to trust the validity of results of health data analyses. Data must be stored safely, but information should flow where needed and/or desired.”
The FAIR Data Principles and the Personal Health Train (PHT) are mentioned specifically. As a minimal step to promote interoperability, the Minister states that healthcare data should be made FAIR. He intends to include the FAIR Principles in future government programmes with the aim to promote exchange of data, possibly as a requirement to receive government funding. The Personal Health Train is mentioned as an approach that would allow information to be combined and analysed across local data sources, whilst keeping the data at the source as much as possible. The Minister wants to explore which techniques for federated data querying work best and would stand a chance to be adopted as standard methods in the care domain. Key to this approach would be that data can be employed to serve health, while citizens and healthcare professionals retain control over their data.
In recent years, the DTL network has worked hard with international colleagues to elaborate and advocate the FAIR Data Principles, and to develop the PHT concept and other FAIR implementations. This is done in close alignment with the globally operating GO FAIR initiative and with ELIXIR, the European life sciences data infrastructure. In the framework of the Dutch national Health-RI initiative, the FAIR and PHT approaches have meanwhile been adopted as key concepts to develop the Dutch national infrastructure for health research.
Many organisations with an interest in application of the Personal Health Train in the health care domain have now also approached the DTL network to collaborate, including organisations from the private sector and public health care sector. Parties are clearly interested to assist in further development and tangible implementation of the PHT concept in their daily practice of care, or as part of their business model. This opens the road to really employ data for health in our society.
In the coming period, we will take further steps with a broad range of stakeholders to establish a national PHT programme and gather experiences of the FAIR and PHT approaches in both the health research field and care sector. We will connect interested parties and keep stock of how PHT implementations help realise tangible value in the care and broader public health practice. To stimulate an open innovation approach, parties are invited to sign the PHT Manifesto.
If you want to know more, or if you would like to contribute, please contact us at PHT@dtls.nl.
See also: https://www.dtls.nl/fair-data/