Since 2013, the Dutch Association of General Practitioners has, in an essential civil case, been litigating against the private successor of the Dutch Electronic Health Record (Elektronisch Patiëntendossier, EPD): the National Switch Point (Landelijk Schakelpunt, LSP). At the end of last week, the Dutch Supreme Court decided that, for the time being, the LSP is not in violation of current privacy law. However, the Supreme Court has laid down in its judgment that the LSP will soon have to comply with the legislative requirement of privacy-by-design. This constitutes an important precedent and raises the bar with a view to the future.
Private relaunch of EPD: National Switch Point
In April 2011, the Dutch Senate unanimously rejected the EPD, primarily on account of privacy objections. However, almost directly afterwards, various market participants (among which health insurance companies) made sure there was a relaunch of the same EPD in private form: the LSP, intended for the large-scale, central exchange of medical data. Since then, the LSP has been introduced nationally and many practitioners have aligned themselves with it, oftentimes under pressure of health insurers. Millions of people in the Netherlands have given their ‘consent’ to the exchange of their medical records via the LSP. However, this ‘consent’ is so broad and general, it’s virtually impossible to deem it lawful. This was one of the main objections the court case of the Association of General Practitioners against the LSP revolved around. Other objections against the LSP are related to the fact that its architecture is inherently insecure and in breach of privacy. Through the LSP, every connected medical record is accessible for thousands of health care providers. This is in violation of the right to privacy of patients and the medical confidentiality of treating physicians. What’s more, there is no privacy-by-design, for example through end-to-end encryption. The LSP is basically as leaky as a sieve, which means that it’s ideal for function creep and possible abuse by malicious actors.
Specific Consent Campaign
Over the last couple of years, Privacy First has repeatedly raised the alarm about this in the media. We have brought the issue to the attention even of the United Nations Human Rights Council. In April 2014, a large scale Internet campaign was launched on the initiative of Privacy First and the Dutch Platform for the Protection of Civil Rights (Platform Bescherming Burgerrechten) in order to retain and enhance the right to medical confidentiality: www.SpecifiekeToestemming.nl. Ever since, this campaign is being supported by numerous civil organizations, healthcare providers and scholars. The essence of the campaign is that specific consent should (again) become the leading principle when it comes to the exchange of medical data. In case of specific consent, prior to sharing medical data, clients have to be able to decide whether or not, and if so, which data to share with which healthcare providers and for which purposes. This minimizes risks and enables patients to control the exchange of their medical data. This is in contrast to the generic consent that applies to the LSP. In the case of generic consent, it is unforeseeable who can access, use and exchange someone’s medical data. In this respect, generic consent is in contravention of two classic privacy principles: the purpose limitation principle and the right to free, prior and fully informed consent for the processing of personal data.
Privacy by design
Courtesy also of the pressure exerted by our campaign SpecifiekeToestemming.nl, the Dutch legislative proposal Clients’ Rights in relation to the processing of data in healthcare (legislative proposal 33509), was strenghtened by the House of Representatives in 2014 and was adopted by the Senate in 2016 as a result of two crucial motions: 1) the motion Bredenoord (D66) about the further elaboration of data-protection-by-design as the starting point for the electronic processing of medical data and 2) the motion Teunissen (Party for the Animals) related to keeping medical records accessible on a decentral (instead of a central) level. Under the new law, specific (‘specified’) consent is obligatory. This should now be implemented in all existing and future systems for the exchange of medical data, including the LSP. Moreover, privacy-by-design will become an inexorable legal duty under the new European General Protection Data Regulation (GDPR), that is to say, privacy and data protection should be incorporated in all relevant hardware and software from the very first design. In this context, there have been several developments on the Dutch market in recent years, all of which indicate that both specific consent as well as privacy-by-design are indeed becoming standards in new systems. A prime example of this in a medical context is Whitebox Systems, which won a Dutch National Privacy Innovation Award in 2015 already.
Court case of Association of General Practitioners
Since March 2013, the Dutch Association of General Practitioners (Vereniging Praktijkhoudende Huisartsen, VPH) has been litigating in a large-scale civil case against the private administrator of the LSP: the Association of Healthcare Providers for Healthcare Communication (Vereniging van zorgaanbieders voor zorgcommunicatie, VZVZ). Following unsatisfactory rulings by the district court of Utrecht and the Arnhem Court of Appeal, VPH appealed before the Dutch Supreme Court at the end of 2016. Since then, this case has, on the recommendation of Privacy First, received pro bono support from law firm Houthoff Buruma. As amicus curiae, Privacy First and the Platform for the Protection of Civil Rights filed a letter (PDF) with the Supreme Court in support of the general practitioners and in line with our joint campaign SpecifiekeToestemming.nl. In her conclusion, the Advocate general of the Supreme Court referred extensively to the amicus curiae letter. On 1 December 2016, the Supreme Court finally came up with its ruling. Regrettably, the Supreme Court by and large agreed with the line of reasoning of the Arnhem Court of Appeal. Privacy First cannot help thinking that the LSP (even before the Supreme Court) is apparently too big too fail: by now this faulty system has grown to the extend that no one dares to declare it unlawful. There is, however, an important positive note, which can be found in the final consideration of the Supreme Court:
‘‘[The Court has] acknowledged that the healthcare infrastructure can be designed in such a way that a clearer distinction can be made between (sorts of) data and (categories of) healthcare providers and, particularly, in such a way that the exchange of data on the basis of consent can beforehand be limited to cases of urgency. The Court takes the view that such infrastructure would be better in line with the principles of the Privacy Directive and the Personal Data Protection Act, but that it could not have been demanded from VZVZ at the time of the contested ruling. According to the Court, VZVZ can be expected, however, to alter its system offering greater freedom of choice, as soon as this is technically possible and feasible.
These considerations are not incomprehensible. It is worthwhile noting that, considering (...) the regulatory changes and VZVZ’s ambitions in relation to the system (...), privacy by design and privacy by default as explicit points of departure (art. 25, paragraphs 1 and 2 General Data Protection Regulation), is what the Court can reasonably expect from VZVZ.’' (5.4.4)
Just like the Arnhem Court of Appeal, the Supreme Court clearly homes in on the implementation of specific consent and privacy-by-design when it comes to the LSP. The Supreme Court thereby creates a positive precedent which will set the scene for the future, also in a broader sense. Privacy First will continue to actively follow the developments in this case and, if necessary, will not hesitate to bring certain aspects to the attention of the courts once more.
HERE you find the amicus curiae letter written by Privacy First and the Dutch Platform for the Protection of Civil Rights (pdf in Dutch).
Comments from the Dutch Association of General Practitioners: http://www.vphuisartsen.nl/nieuws/cassatieberoep-vphuisartsen-verloren-toch-winst/
Comments from SpecifiekeToestemming.nl: http://specifieketoestemming.nl/werk-aan-de-winkel-na-teleurstellend-vonnis-over-lsp/.