What does "health data as a common good" mean?
“Health data as a common good” is the phrase at the heart of Health Data Safe’s mission. It gets misread in two opposite directions.
What it is not
It is not collectivisation. A common good does not mean the state, a hospital or a foundation owns your data, or that your record is poured into a shared pool. Each person keeps complete control over their own data; that control is the starting point, not the casualty.
It is also not a market. The opposite failure is treating health data as a commodity: bought, sold, and monetised by whoever holds it. A 2022 review of the 23 most popular women’s health apps found that 20 shared user data with third parties, and that current practices did not follow existing rules such as the GDPR.
What it is
A common good is a resource governed so that it serves everyone’s benefit under rules no single actor can bend, a third way between state and market that Elinor Ostrom documented in shared resources long before anyone spoke of data commons. For health data, Health Data Safe’s statutes make that concrete:
- Health data is neither bought nor sold. The statutes make health data a common good, and the ban on any transaction in data follows directly from that principle: neither HDS nor the patients using the platform may trade it.
- Its use is confined to clinical care and ethically approved research. No advertising, no profiling, no resale.
- The Foundation has no profit-making purpose, and its statutes put patients’ fundamental rights and their control over their own data at the centre.
- Two principles guide the governance: subsidiarity (decisions are made at the most local level capable of handling them, and the patient is the primary decision-maker about their own data) and solidarity (the infrastructure serves the conditions most in need of evidence, not only the largest commercial markets).
Why statutes rather than promises
These commitments are not internal policies that a board might revise. They are written into the statutes of a Swiss foundation, and Swiss foundation law makes that mission durable. A foundation is the endowment of assets for a particular purpose (Swiss Civil Code, Art. 80); a supervisory authority, federal in HDS’s case, must ensure those assets are used for the declared purpose (Art. 84); and that purpose can only be altered by the competent authority, in narrowly defined cases (Art. 86). A company can pivot at will; a foundation cannot.
The practical consequence: an individual contribution (your consented data) can serve the collective good (research, better care) without ever leaving your control or becoming someone’s asset. Individual good, collective good, and the common good of society are pursued together rather than traded against each other.
Read the essential articles of our statutes, or see who owns your health data.
Sources
- Ostrom E (1990). Governing the Commons: The Evolution of Institutions for Collective Action. Cambridge University Press. doi:10.1017/CBO9780511807763
- Prainsack B (2019). Logged out: ownership, exclusion and public value in the digital data and information commons. Big Data & Society 6(1). doi:10.1177/2053951719829773
- Alfawzan N, Christen M, Spitale G, Biller-Andorno N (2022). Privacy, data sharing, and data security policies of women’s mHealth apps: scoping review and content analysis. JMIR mHealth and uHealth 10(5): e33735. doi:10.2196/33735
- Swiss Civil Code of 10 December 1907 (SR 210), Art. 80 to 89a on foundations, in particular Art. 80, 84 and 86. Fedlex consolidated text, English and French.
- Federal Supervisory Authority for Foundations (ASF / ESA), Federal Department of Home Affairs. esa.admin.ch