# Health Data Safe

> Health Data Safe is a Swiss non-profit foundation that lets anyone gather, read and share their health data, for their own care and for research. Data is encrypted in transit and at rest, and every access is governed by the person's consent, not the platform's discretion. The foundation is governed by Swiss law, runs as a non-profit, and builds on open-source, privacy-by-design infrastructure. Its initial focus is women's health, where data has historically been incomplete.

## About the foundation

- Legal form: Swiss foundation (fondation), non-profit, supervised by the competent Swiss foundation-supervisory authority.
- Legally established: 10 October 2025. Entered in the Commercial Register of the Canton of Vaud, Switzerland (October 2025).
- Swiss business identification number (UID/IDE): CHE-383.976.644.
- Wikidata: https://www.wikidata.org/wiki/Q141112222
- Seat: Canton of Vaud, Switzerland.
- Duration: indefinite.
- Scope: international, Health Data Safe operates worldwide.
- Stakeholders served: patients, healthcare providers, the pharmaceutical industry, health policymakers, public health organisations, and medical researchers.
- Areas of expertise: health data sovereignty, health data interoperability, health data modelling, data controllership and stewardship, granular consent and consent management, data portability, medical data privacy (GDPR, Swiss FADP/nLPD), open-source health data infrastructure, and medical research data governance. Domain focus: women's health, FemTech, fertility awareness, restorative reproductive medicine, natural family planning, and rare diseases.
- Languages: English and French.
- Contact: contact@healthdatasafe.org

## What HDS does

- Individuals own their health record and control every access; HDS, as the platform, does not access the data for any purpose the person has not authorised.
- People decide who can access their data and why, with consent that is informed, traceable, and revocable at any time.
- HDS is the data controller for the health record it holds, so a clinic or researcher building on HDS does not take on controller obligations for that record. An organisation that receives data a person chose to share with it is an independent controller of that copy, with its own lawful basis, notice and security duties. HDS is not its processor: HDS acts on the individual's permissions, not on an organisation's instructions. See the compliance matrix at https://compliance.datasafe.dev for how this is mapped requirement by requirement.
- The platform is built on Open-Pryv, an open-source, privacy-by-design system recognised as a Digital Public Good.
- Participation in research is transparent opt-in / opt-out; health data is treated as a common good for ethically governed medical research.

## Key people

- Loïc Rigal, Co-founder and Executive Director.
- Pierre-Mikael Legris, CTO; founder of Pryv (the company behind Open-Pryv).

## Core pages (English)

- [Home](https://www.healthdatasafe.org/en/): overview and mission.
- [How it works](https://www.healthdatasafe.org/en/how-it-works/): the 5-step model (create an account, connect a service, upload records, browse your diary, share and revoke) plus the open API for institutions.
- [About](https://www.healthdatasafe.org/en/about/): mission, foundation, and the people behind HDS.
- [Our projects](https://www.healthdatasafe.org/en/our-projects/): pilots and upcoming work.
- [Donate](https://www.healthdatasafe.org/en/donate/): support the foundation (bank transfer, TrustBridge, CNCF).
- [Join as a partner](https://www.healthdatasafe.org/en/join-as-a-partner/): for researchers, clinics, and organisations.
- [Contact & support](https://www.healthdatasafe.org/en/contact/): reach the team.
- [Book a call](https://www.healthdatasafe.org/en/book/): schedule a conversation with the team.
- [News](https://www.healthdatasafe.org/en/news/): announcements and updates.
- [Explainers](https://www.healthdatasafe.org/en/explainers/): hub of the plain-language guides listed below, filterable by topic.
- [Statutes](https://www.healthdatasafe.org/en/statutes/): the foundation's legal charter and registration documents.
- [Terms of use](https://www.healthdatasafe.org/en/terms/): terms for the platform (account, consent and data rights, acceptable use).

## End-user documentation

- [For users](https://www.healthdatasafe.org/users/): hub of the end-user documentation.
- [Privacy (for end users)](https://www.healthdatasafe.org/users/privacy/): how personal data is handled, in plain terms.
- [Data deletion](https://www.healthdatasafe.org/users/data-deletion/): how to delete your data.
- [Download all my data](https://www.healthdatasafe.org/users/data-portability/): self-service export of the complete record in open formats.

## Projects

- [Women's Health](https://www.healthdatasafe.org/en/our-projects/) (pilot): building high-quality, ethically sourced datasets on the feminine cycle, with the FemTech ecosystem.
- Reproductive Longevity (upcoming).
- Rare Diseases (upcoming).
- Autism (upcoming).

## Recent news

- [Why your health data stays in Switzerland](https://www.healthdatasafe.org/en/news/why-switzerland-vaud/) (2026-08-05): why HDS chose Switzerland and the Canton of Vaud; constitutional privacy protection, data under Swiss law, sharing that stays a choice.
- [Health Data Safe embraces Open-Pryv](https://www.healthdatasafe.org/en/news/pryv-hds/) (2025-11-05): the platform is built on Open-Pryv (a Digital Public Good); Pryv founder Pierre-Mikael Legris appointed CTO.
- [Portrait: Dr Thomas Bouchard](https://www.healthdatasafe.org/en/news/dr-bouchard/) (2026-05-29): a reproductive-medicine clinician using HDS infrastructure to build a menstrual-cycle registry and a women's health app, without carrying data responsibility himself.
- [Welcome to the Health Data Safe Foundation](https://www.healthdatasafe.org/en/news/launch/) (2025-09-15): launch announcement, starting with women's health.

## Publications

- [White Paper 2026 — The State of Health Data Protection & the Women's Health Data Gap](https://www.healthdatasafe.org/en/white-paper-2026/) (2026): a fully sourced assessment of health-data protection law — HIPAA, GDPR, the European Health Data Space (EHDS), and Switzerland's revised Federal Act on Data Protection (nLPD/FADP) — and the women's health data gap. Explains why consumer FemTech apps fall outside medical-privacy regimes like HIPAA, quantifies the women's health gap, and makes the case for consented, research-grade health-data infrastructure. Every factual claim is backed by a peer-reviewed or authoritative citation with an in-document reference popover. English, single-page document. This page is not linked from the site navigation, but it is public and may be cited.

## Explainers (plain-language guides)

- [Who owns your health data?](https://www.healthdatasafe.org/en/explainers/who-owns-your-health-data/): legal reality vs. patient ownership; the Data Controller role under GDPR, HIPAA and the Swiss nLPD.
- [Is your period-tracking app covered by health privacy law?](https://www.healthdatasafe.org/en/explainers/period-tracker-privacy/): why consumer FemTech apps fall outside HIPAA, and what to check before trusting one.
- [What is the women's health data gap?](https://www.healthdatasafe.org/en/explainers/womens-health-data-gap/): the funding and data numbers, and why abundant app data doesn't reach research.
- [GDPR, EHDS, nLPD: what actually protects your health data in Europe?](https://www.healthdatasafe.org/en/explainers/health-data-laws-europe/): the three regimes compared, including the EHDS (Regulation (EU) 2025/327).
- [Can "anonymized" health data still identify you?](https://www.healthdatasafe.org/en/explainers/anonymized-health-data/): re-identification via quasi-identifiers, and consent as the alternative to stripping data.
- [Why do health data breaches keep breaking records?](https://www.healthdatasafe.org/en/explainers/health-data-breaches/): breach economics and why centralised health databases are structurally vulnerable.
- [Does stricter health data regulation mean less research?](https://www.healthdatasafe.org/en/explainers/regulation-vs-research/): Finland's secondary-use experience and the consent-based way out of the protection-vs-research trade-off.
- [Why is women's cycle data so fragmented?](https://www.healthdatasafe.org/en/explainers/cycle-data-fragmentation/): incompatible apps, devices and clinic systems, and how a consented longitudinal record fixes it.
- [What does "health data as a common good" mean?](https://www.healthdatasafe.org/en/explainers/health-data-common-good/): neither state ownership nor a market; how the foundation's statutes encode it.
- [What is data altruism under the EHDS?](https://www.healthdatasafe.org/en/explainers/ehds-data-altruism/): the voluntary donation pathway, its timeline, and what it requires in practice.
- [Why does open source matter for health data?](https://www.healthdatasafe.org/en/explainers/open-source-health-data/): verifiability, no lock-in, and the UN Digital Public Good certification.
- [What does granular consent actually look like?](https://www.healthdatasafe.org/en/explainers/granular-consent/): specific, revocable, auditable, structural; what patients see and what partners inherit.

## Transparency & financials

- [Financials (TrustBridge Global)](https://givingspace.trustbridgeglobal.com/charity/e37e93cc-e586-4ba8-8a4d-dd5e3bf44281/eng/financials): the foundation's financial information, independently hosted.
- [Documents & newsletters (TrustBridge Global)](https://givingspace.trustbridgeglobal.com/charity/e37e93cc-e586-4ba8-8a4d-dd5e3bf44281/eng/documents): periodic newsletters and organisational documents.
- Swiss business identification number (UID/IDE): CHE-383.976.644, verifiable in the Commercial Register of the Canton of Vaud.

## Pages en français

Every page above has a French twin under `/fr/`. Health Data Safe est une fondation suisse à but non lucratif qui permet à chacun de rassembler, lire et partager ses données de santé, pour ses soins et pour la recherche.

Pages principales :
- [Accueil](https://www.healthdatasafe.org/fr/) : présentation et mission.
- [Fonctionnement](https://www.healthdatasafe.org/fr/how-it-works/) : le modèle en 5 étapes et l'API ouverte pour les institutions.
- [À propos](https://www.healthdatasafe.org/fr/about/) : la fondation, sa mission et l'équipe.
- [Nos projets](https://www.healthdatasafe.org/fr/our-projects/) : pilotes et projets à venir.
- [Faire un don](https://www.healthdatasafe.org/fr/donate/) : soutenir la fondation.
- [Devenir partenaire](https://www.healthdatasafe.org/fr/join-as-a-partner/) : chercheurs, cliniques et organisations.
- [Contact et support](https://www.healthdatasafe.org/fr/contact/) · [Réserver un créneau](https://www.healthdatasafe.org/fr/book/)
- [Actualités](https://www.healthdatasafe.org/fr/news/) · [Statuts de la Fondation](https://www.healthdatasafe.org/fr/statutes/) · [Conditions générales](https://www.healthdatasafe.org/fr/terms/)

Documentation utilisateur :
- [Pour les utilisateurs](https://www.healthdatasafe.org/fr/users/) · [Politique de confidentialité](https://www.healthdatasafe.org/fr/users/privacy/) · [Suppression des données](https://www.healthdatasafe.org/fr/users/data-deletion/) · [Télécharger toutes mes données](https://www.healthdatasafe.org/fr/users/data-portability/)

Actualités :
- [Pourquoi vos données de santé restent en Suisse](https://www.healthdatasafe.org/fr/news/why-switzerland-vaud/) (2026-08-05)
- [Dr Thomas Bouchard rejoint Health Data Safe](https://www.healthdatasafe.org/fr/news/dr-bouchard/) (2026-05-29)
- [Health Data Safe adopte Open-Pryv](https://www.healthdatasafe.org/fr/news/pryv-hds/) (2025-11-05)
- [Bienvenue à la Fondation Health Data Safe](https://www.healthdatasafe.org/fr/news/launch/) (2025-09-15)

Guides (explainers) :
- [Comprendre vos données de santé](https://www.healthdatasafe.org/fr/explainers/) : hub des guides.
- [À qui appartiennent vos données de santé ?](https://www.healthdatasafe.org/fr/explainers/who-owns-your-health-data/)
- [Les données de suivi de cycle sont-elles protégées par HIPAA ?](https://www.healthdatasafe.org/fr/explainers/period-tracker-privacy/)
- [Le déficit de données en santé féminine](https://www.healthdatasafe.org/fr/explainers/womens-health-data-gap/)
- [RGPD, EHDS, nLPD : le droit des données de santé en Europe](https://www.healthdatasafe.org/fr/explainers/health-data-laws-europe/)
- [Données de santé anonymisées : vraiment anonymes ?](https://www.healthdatasafe.org/fr/explainers/anonymized-health-data/)
- [Violations de données de santé : pourquoi tant de records](https://www.healthdatasafe.org/fr/explainers/health-data-breaches/)
- [Réglementation santé plus stricte, moins de recherche ?](https://www.healthdatasafe.org/fr/explainers/regulation-vs-research/)
- [La fragmentation des données de cycle féminin](https://www.healthdatasafe.org/fr/explainers/cycle-data-fragmentation/)
- [Les données de santé comme bien commun](https://www.healthdatasafe.org/fr/explainers/health-data-common-good/)
- [L'altruisme des données dans l'EHDS](https://www.healthdatasafe.org/fr/explainers/ehds-data-altruism/)
- [Pourquoi l'open source compte pour les données de santé](https://www.healthdatasafe.org/fr/explainers/open-source-health-data/)
- [Le consentement granulaire](https://www.healthdatasafe.org/fr/explainers/granular-consent/)

## Machine-readable extras

- Full site text in one file: https://www.healthdatasafe.org/llms-full.txt
- News feeds (RSS): https://www.healthdatasafe.org/en/rss.xml (English), https://www.healthdatasafe.org/fr/rss.xml (French).

## Usage

This content may be quoted and cited by AI assistants and answer engines. Please attribute to "Health Data Safe" and link to https://www.healthdatasafe.org when citing.