Why does open source matter for health data?
Trust in health data infrastructure usually rests on promises: a privacy policy, a certification logo, a vendor’s word. Open source replaces one class of promise with something stronger: code anyone can inspect.
The case in three points
Verifiability. When the software holding your medical record is open source, its privacy behaviour is a checkable fact rather than a marketing claim. Independent experts can audit exactly what happens to the data.
No lock-in. Health data outlives every vendor. Open source guarantees platform independence: if the company or foundation behind the software disappears, the code, the data formats, and your ability to migrate remain.
A commons, not a moat. Closed platforms treat infrastructure as a competitive asset, which is one root of the fragmentation problem in health data. Open infrastructure lets clinics, researchers and app developers build on shared rails instead of rebuilding (and re-fragmenting) the same machinery.
What certification adds
Open-Pryv, the platform Health Data Safe builds on, was certified as a UN Digital Public Good by the Digital Public Goods Alliance on 19 April 2024. The DPGA Standard is a useful checklist of what “trustworthy open infrastructure” means: open licence, open standards, privacy compliance, platform independence, and alignment with the UN Sustainable Development Goals. HDS is listed as the primary sponsor of Open-Pryv’s ongoing development.
Open source with opinionated defaults
Openness alone does not protect anyone; defaults do. Open-Pryv ships twelve structural privacy defaults, privacy-protective behaviours that cannot be misconfigured away, starting with default-deny permissions: no data is accessible until the person explicitly grants access. The platform models 92 data-point types and keeps an invariant audit log, so consented research data is structured and every access is traceable.
Open code makes the guarantees inspectable; structural defaults make them hard to break, even by the operator.
Read the story of why HDS embraced Open-Pryv, or see how consent works in practice in granular consent explained.