They do not yet own their data.
It sits in hospitals, pharmacies, laboratories, insurance systems, and the data lakes of companies whose names you have never heard. It was built to serve institutions. You were the source of the data. With the right infrastructure, you become the primary beneficiary.
You do not think about the grid when you turn on a light. That is the mark of infrastructure that works. Our mission is to make the foundations of digital health equally dependable, so that money, talent and attention move to where they create value: the moment between a patient and a professional, and the technologies built on top of a foundation that simply holds.
These are the consistent output of a system built to serve institutions rather than people. Each one is preventable.
Sources: Burnett et al., Missing clinical information in NHS hospital outpatient clinics, BMC Health Services Research 11:114, 2011 (1,161 patients, three NHS teaching hospitals) · The UK Sepsis Trust, from Hospital Episode Statistics analysis corroborated by IHME · IHME, Financing Global Health 2025.
“Everyone won.
Except the patient.”
The problem was not the director. The problem was the architecture. Open data, connected records, and shared infrastructure create the conditions in which citizens benefit from their own health information. DHCF is the mechanism through which that architecture is built.
Stuart Mackintosh · Co-Founder, DHCF
The shared framework that allows every digital health system in Europe to speak to every other. The highway code. Without it, everyone builds Swiss plugs.
Gold, silver, bronze quality standards across every tier of the ecosystem: the organisation, the software, the implementation, the operation. Trust that travels.
Approximately 200 geographically distributed organisations holding the commons in trust. Maintained. Accountable. Ungameable by any single commercial actor.
Each of these has the same root. Foundations built to serve institutions shape every layer above them, and foundations built to serve people would do the same.
The European Health Data Space Regulation entered into force on 26 March 2025, the first legal mandate for cross-border health data interoperability across the EU. It applies from 26 March 2027, and the chapters governing electronic health record systems and secondary use phase in from 2029. So the right exists and the clock is running, while the technical and economic architecture that would allow the right to be exercised does not yet exist. Development assistance for health fell 21% in a single year. The question of who builds health data infrastructure, and whose interests it serves, is being answered right now, by the people who show up.
The association is established under Luxembourg law and works across Europe and beyond. Its creations are available in the public domain, with an open licence, which is what makes fairness, sustainability and safety enforceable rather than aspirational.
The timing is favourable: mature digital technology, increasing pressure on health systems, and a pressing need for a viable alternative to the current market reality.
Sources: Regulation (EU) 2025/327, Article 105 · IHME, Financing Global Health 2025.
There is a particular kind of person who does not need to be persuaded. They have felt it - in a hospital waiting room, in a conversation about a parent’s medication, in the moment when someone they loved needed the data and it was not there. We put the truth of what we are building into the world and trust that those who are ready will find their way to the conversation.
A founding board of three carries the governance. The work itself is done by a wider circle: the authors of the Forum's publications, the clinicians and architects who brought their thinking to the video library, and the partners who convene with us.
Fund. Donations support the association's work, with all creations available in the public domain.
Endorse. Partners endorse the initiative, promote adoption, and drive improved health information landscapes.
Collaborate. Experts, practitioners, custodian organisations and pilot projects are invited to join the collaboration network.