The new law for giving permission to exchange medical data via the national electronic patient record LSP is proving impracticable. So says the steering committee charged with putting this so-called "specified consent" into practice. On Wednesday, Jan. 30, the Lower House will debate the issue.
With "specified consent," a patient authorizes access to his or her medical record by category of health care providers. This is in contrast to specific consent, where the patient grants access to a specific health care provider.
Specified consent is not in line with medical confidentiality and the AVG privacy law, because giving consent by category of caregiver means that any caregiver in that category can look at the medical record, even if there is no treatment relationship.
But in the electronic health record LSP, it is not possible to give consent per practitioner. This is because the system is set up the wrong way around. Instead of medical data never being shared unless there is consent, data in the LSP is always shared unless blocked for certain categories. This inverted structure is a design flaw and cannot be fixed. Specified consent is a legal stopgap to address these shortcomings of the LSP, at the expense of medical confidentiality.
Impracticable
But now even this way of giving permission by category turns out to be impracticable. After all, how many categories should you create? Few categories is convenient to introduce, but means poor protection of the medical record, because a category then includes many care providers. If one chooses many and smaller categories, it is difficult for patients to keep track of what consent has been given, and the implementation of all these categories becomes quite a task for health care providers and technical systems.
To work this out, a steering committee was formed in 2016 with representatives from the healthcare field, patients and e-health experts. They examined what would be a desirable number of categories. That study revealed that consent should be given across 160 categories. Based on this, the steering committee concludes that "the current elaboration [is] insufficiently workable and feasible for citizens, patients and healthcare providers." The steering committee is asking Minister Bruins (VVD) how to proceed.
Politics on the move
But Minister Bruins has no idea either. In a letter, he asks the House of Representatives for help: "I would like to enter into discussion with your Chamber [...] to consider a scenario, in which the intent of the article of law is taken as a starting point and that a citizen determines how specified he wants to record his consent profile." On Wednesday, Jan. 30, the House of Representatives will debate this letter with the minister.
Wrong choices
This unworkable situation is the result of sticking to the wrong choice. Already when the LSP was introduced, it appeared that this system could never meet the legal rules. The Senate therefore voted the system away in 2011, but then Minister Schippers (VVD) continued with it through the side door. We are now being presented with the bill.
Minister Bruins and the House of Representatives would do well to recognize that this system is fundamentally inconsistent with medical confidentiality and privacy law. It leads to poor patient privacy protection and an unworkable and impractical practice. It is time to consider a world without LSP.
This article can also be found in the Privacy in Healthcare file
