For more than 10 years as a member of Parliament, Fleur Agema fought to preserve medical confidentiality, privacy and citizens' control over their medical data. The policy she wants to implement as Minister is diametrically opposed to this. On Tuesday, Oct. 22, the Lower House will debate the Minister's plans and budget.
In 2011, the Senate rejected a proposal for a nationwide EHR, in which access to everyone's medical data was to be through a central facility. Patients' records remained with physicians, but patients depended on the central facility to control access to them. Citizens ultimately retained the right to consent ("opt-in") because the Senate found a right to object ("opt-out") insufficient.
With that, however, there was still no alternative. On the contrary: then Minister Schippers decided to transfer the technical infrastructure, the National Switch Point (LSP), to the health insurance companies. Under the administrative responsibility of field parties in health care, the LSP was developed further over the past 13 years. This gave the physician umbrellas, hospitals and the Patient Federation an interest as software providers.
This is precisely what MP Agema has always opposed and yet the Minister (Agema) now wants to expand precisely this model, scale it up and introduce multiple "opt-outs.
The outline agreement explicitly still mentioned an alternative:
A secure, decentralized electronic health record, including for exchange of data within healthcare, while respecting privacy and data security.
- Outline agreement
This solution enables each healthcare provider to make medical data available to other healthcare providers in a targeted manner, i.e., among themselves, without a switchboard in between. Patients are guaranteed that their data can be accessed only where it is relevant to their treatment and nowhere else. This is a solution for all care on referral, over 90% of the total, and works at a fraction of the cost of a central facility.
In that case, there is almost exclusively for 'emergency care' a central solution is needed. Because access can be limited to the doctor's office, ambulance and emergency room, security and privacy risks are perfectly manageable. In that case, an 'opt-out' makes perfect sense.
However, this alternative scenario also results in citizens and health care providers becoming independent of the Ministry, health insurers, and the other field parties. Thus, the solutions they provide become significantly less relevant. This also applies to the newest services: the online consent facility "Mitz," the hospitals' data warehouse ("Cumuluz"), and a network for the "secondary" use of data from HealthRi.
In the proposed policy (p.62) only for a centralized solution, in line with the interests of the field parties. This should then include multiple 'opt-outs,' including for the European Health Data Space (EHDS). After more than 10 years of opposition to the 'opt-out,' Minister Agema is not only introducing several. The question is also what real meaning these 'opt-outs' still have if you can no longer actually 'opt out' of the system.
With one solution for everything and everyone, citizens become dependent on a gigantic institution where all sorts of interests other than patient care also come into play for monitoring their most personal data. It again creates a "central point of failure," with the risk that at some point no data can be exchanged at all.
MP Agema had never agreed to this. She had opted for a decentralized alternative. That shifts power to the most important stakeholders in this game: patients and their health care providers.
See also the letter that Privacy First sent to the House of Representatives last October 16.
