Twelve years after the Senate voted down the National Electronic Patient Record (EHR), a new law should start giving patients freedom of choice in how their data is shared.
However, in a debate with the Senate on Tuesday 11 April last, the minister indicated that he would refrain from doing so. He is thus heading (as yet) for a new variation of the National SPD.
The new Electronic Data Interchange in Health Care Act (Wegiz) should gradually make the digital exchange of medical data mandatory. This will put an end to faxing and printing medical data, thereby reducing the risk of data leaks. This obligation must not lead to citizens being forced to give their consent as yet to use the former National EPD (LSP), or similar systems. This is precisely where the minister now wants to deviate from the law.
In response to questions by Upper House member Arda Gerkens (SP), the minister stated that there is only a difference in "semantics". A proposed Parliamentary motion could not count on his support, however.
Patient gives up freedom of choice
During the preparation and discussion in the Lower House, the minister repeatedly expressed his intention to start offering patients a real choice. Data can be exchanged through a centralised exchange system, such as a National EHR, or decentralised between doctors. For most patients, the latter option is by far the most convenient. With a referral, the data travel with the treatment and, as a patient, you can sit back and relax. Doctors make mutual agreements about which data are relevant for which referral.
The minister is now calling for a new "nationwide infrastructure". Patients will have to manually track which healthcare providers need to access which data. This is remarkable to say the least, as the Minister previously indicated that this method of 'specified consent' would be unworkable for citizens and patients. Moreover, patients are now forced to use a solution developed by private parties, including the Health Insurers.
"Unimaginable" said Marc Smits, board member at Privacy First. "This bill is heading for the best solution within the entire European Union, the minister now wants to abandon that to preserve old interests."
New law, nice promises
The new law contains two major improvements over the current situation. There are to be open standards for data exchange. These will be developed in a transparent process by the NEN, where in principle anyone can join. This prevents backroom politics and makes policy-making visible to all. The second improvement is the free choice in how a patient directs. For patients with more complex care needs, the National Infrastructure can be a good solution. These may benefit from an Online Consent Provision (OTV) through which they control access themselves. For most patients, however, this offers no added value. They would benefit more from a prescription automatically going to the right pharmacy. "Besides, you then always have visibility of where your data is, after all, you have been there yourself," says says Smits.
The question now is what happens when the law is passed and the first data exchange is made mandatory. If that can only take place through a system like the National EHR, then patients will be forced to consent to this and the minister is not complying with his own law.
Vote on the bill and motion is scheduled for Tuesday 18 April as.