The EHDS request and the post-COVID rule of law
The EHDS is regarded by people who distrust the government as a manipulative trick. But suspicious people will soon benefit enormously from the EHDS request.
Conspiracies?
People who distrust the government view the EHDS as a manipulative ploy and a deception of the public: the idea is that the coronavirus pandemic is being exploited to gather every possible detail about us citizens. What is striking, however, is that even these skeptical individuals stand to benefit enormously from the EHDS—including during a pandemic, and also if they have little grasp of statistics. This is because the EHDS provides not only for data access permits but also for "requests": requests for answers presented in a specific, anonymized statistical format (Article 69). Anyone can submit such a request, which is excellent for the rule of law, as it enables citizens to independently verify whether certain policy decisions were actually sound.
No data to researcher, but answer to requestor
In addition to the health data permit, the EHDS also provides for a "request." The outcome is essentially just receiving an answer (in a specific anonymous statistical format). The EHDS stipulates that if a permit application is unlikely to be granted, it must always be considered whether the matter can be handled as a query instead. One can also choose to submit a query rather than applying for a permit. This option is linked to privacy considerations, as privacy must be protected to the greatest extent possible. The idea is—where reasonably feasible—not to make raw data available to researchers, but rather to provide only the answer to their question. Currently, there is no legal mechanism to compel such an answer. While one can request electronic data under the Open Government Act or the Re-use of Public Sector Information Act, one cannot request an analysis of that data. Under the EHDS, however, it appears one can ask for a specific calculation to be performed. This makes potential knowledge much more widely accessible. The EHDS query mechanism should therefore be viewed as a significant step forward (although, naturally, it will not be free of charge).
Who will take this on? Freedom of choice against mistrust
Strikingly, there is no discussion at all regarding who will actually carry this out in the Netherlands. The decision regarding such an EHDS request is an administrative law decision that the Health Data Access Body (HDAB) itself must make. However, generating the substantive answer, performing the analysis, is a factual task that can be outsourced. The HDAB could therefore outsource this to a government agency experienced in analyzing health data, such as (in The Netherlands) Statistics Netherlands (CBS) or the National Institute for Public Health and the Environment (RIVM). Ideally, the applicant would be given the option to choose who generates the answer to their request. This would help counter public suspicion. In this way, the EHDS (often viewed as a ploy by a malevolent government) could actually help alleviate that mistrust. The EHDS is structured in such a way that quality is enforced; there are EHDS purposes upon which a request can be based, though certain purposes can only be invoked by (semi-)public bodies. However, anyone can submit a request if it is based on science.
Federated Learning
Incidentally, the EHDS-article concerning the request is drafted in particularly broad terms. This was presumably done to accommodate, among other things, the concept of Federated Learning. In this approach, data are not aggregated in a central, secure processing environment for analysis; instead, the computational model is brought to the data, and only a partial result, specifically, an answer in a particular statistical format, is returned. Although the scope of the EHDS request is not limited to Federated Learning, Federated Learning does appear to fall within the scope of the EHDS request.