Today Privacy First sent the following email to the Electronic Health Record spokespersons in the Dutch House of Representatives:
Dear Members of Parliament,
On Tuesday 13 December 2012 an important General Meeting with Minister Edith Schippers about the Electronic Health Record (Elektronisch Patiëntendossier, EPD) will take place. The Privacy First Foundation is keen to provide you with the following points of interest in order for you to prepare for and make possible contributions to the debate:
1) As far as Privacy First is aware, at the moment one is working towards an opportunistic spurious solution along private lines, namely a regional exchange of data through the National Switch Point (Landelijk Schakelpunt, LSP). By definition this leads to function creep by design. The digital ‘regional walls’ in and around the LSP can of course easily be circumvented or removed. Therefore the entire system can take on its old central form again at any given moment in the future, with all the privacy and security risks this entails.
2) Those same risks around the LSP will neither be annulled by henceforth indicating the EPD as a ‘Personal Health Record’ (Persoonlijk Gezondheidsdossier, PGD). This is merely privacy by semantics which, moreover, has a misleading effect. Indeed, the infrastructure that’s behind the LSP remains virtually unchanged.
3) A privacy-friendly EPD first of all demands an independent Privacy Impact Assessment (PIA) by which various solutions characterized by privacy by design can be established. As long as such a PIA has not been conducted and subsequently evaluated in Parliament, no irrevocable steps regarding the design and possible extension of the EPD are to be taken.
4) When further designing the EPD, it is absolutely key to leave space for research, innovation and competition. The recent DigiNotar affair shows that dependence on one party (or a select group of parties) is to be avoided. Apart from suboptimal, privacy-unfriendly products, this prevents cartel formations.
5) Apart from proper security, privacy-friendly transparency for patients also requires individual freedom of choice. Access by patients to their own records, for example, is not to be made dependent on the linking up with the LSP. Such access via the internet also creates new privacy related risks.
6) Within the governance structure around the EPD, independent privacy and security experts are to be appointed.
7) In terms of human rights the Netherlands continues to be unabatedly responsible for the protection of the medical privacy of its citizens, even in the event of a privatized EPD. At the initiative of Privacy First the Netherlands will have to be able to account for this in front of the United Nations Human Rights Council in May 2012.
The Privacy First Foundation
On 31 May 2012 the Netherlands will once again be examined in Geneva by the highest human rights body in the world: the United Nations Human Rights Council. The UN Human Rights Council was founded in 2006 and consists of 47 of the 192 UN Member States. Since 2008 the human rights situation in each country is periodically reviewed. This procedure takes place every four years for each UN Member State and is called ‘Universal Periodic Review’ (UPR). During the first UPR session in 2008 it was straight away the Netherlands’ turn to be examined and our country was in fact heavily criticized. In 2011 the privacy situation in the Netherlands is even worse compared to 2008: enough ground for Privacy First to raise a number of issues with the UN. Privacy First did so last night through a so-called shadow report: a report in which NGOs can voice their concerns on a particular issue. (For such reports strict requirements with the Human Rights Council apply, among which a limit of 2815 words.) Without shadow reports, diplomats in the Council are not able to do their work properly. Otherwise they would of course be dependent on the State report of the Netherlands itself. So Privacy First presented its own report with the following recommendations:
• No national biometric database, not even in the long run;
• No introduction of mobile fingerprint scanners;
• Introduction of a truly anonymous OV-chipkaart (Public Transport chip card);
• No introduction of Automatic Number Plate Recognition (ANPR) as currently envisaged;
• Transparency and suspension of the new border control system @MIGO;
• A voluntary, regional instead of national Electronic Health Record System with 'privacy by design';
• Proper legislation concerning the profiling of citizens.
You can download our entire report HERE. We hope that our recommendations will be accepted in the Human Rights Council and will lead to an international exchange of best practices. Privacy First is happy to keep you informed on these developments.
Update 23 March 2012: this week the long-awaited Dutch UPR State report for the Human Rights Council appeared. Moreover, the shadow report by the Dutch section of the International Commission of Jurists (Dutch abbreviation: NJCM) that was presented earlier (also on behalf of 24 other NGOs) became public. The NJCM report contains a very critical section on privacy in which – parallel to the recommendations of Privacy First – among other things, a call for the abrogation of the current plans concerning ANPR and mobile fingerprint scanners is made; see pp. 6-7 of the NJCM report. Relevant reports by other organisations can be found HERE.
Official preparatory work for the Dutch State report has seen two consultation meetings with Dutch civil society (NGOs) at the Dutch Ministry of the Interior (Dutch abbreviation: BZK) in recent months. During the first meeting on 1 December 2011, Privacy First insisted on incorporating a separate section about privacy in the State report. During the second meeting on 16 January 2012, Privacy First requested an explicit mention of ‘privacy by design’ in that very section. BZK responded positively to both requests. However, the privacy section in the State report appears to be relatively short, superficial and elusive. It is telling that this section is part of the chapter ‘Challenges and constraints’. This gives the impression of a defensive attitude. What’s even more telling is the following sentence: ‘‘The challenge will now be to ensure that all these [privacy infringing] measures are implemented.’’ Apparently the Dutch State is not sure where it stands... And rightly so. The mere positive points are the mention of ‘privacy by design’, the report by the Dutch Scientific Council for Government Policy called iOverheid (iGovernment) and the following passage:
"In addition, partly in response to concerns expressed in Parliament, certain policy measures that impact on privacy are currently being modified, as for example the discontinuation of the storage of fingerprint data on national ID-cards and within the passport database."
Privacy First interprets this passage as an international declaration (unilateral statement) from the Netherlands to stop the storage of fingerprints on ID-cards and in its travel document administration once and for all. Privacy First is keen to continue reminding the government of this.
Update 5 April 2012: the international lobbying surrounding the UPR session of the Netherlands on 31 May 2012 is in full swing, both at foreign embassies in The Hague as well as within the permanent representations of UN Member States in Geneva. In this context an important 'UPR pre-session' took place yesterday morning in Geneva where various international human rights organisations had the opportunity to voice their concerns about the Netherlands in front of a broad audience of foreign diplomats. Click HERE for an impression of the meeting about the Netherlands. The statement by Privacy First during this meeting can be found HERE and can also be downloaded on the website of the Dutch Human Rights Institute under incorporation.
Update 21 April 2012: Based on all shadow reports (among which that of Privacy First) that the UN received at the end of 2011, an official UN summary has in the meantime been drawn up in Geneva. This ‘summary of stakeholders’ information’ can be found HERE. Apart from Privacy First, the NJCM (also on behalf of the Dutch Platform for the Protection of Civil Rights / Platform Bescherming Burgerrechten), Bits of Freedom, the Dutch Data Protection Authority, Vrijbit and the Dutch Contact Point on Abuse of Mandatory Identification (Meldpunt Misbruik Identificatieplicht) all sent their privacy worries to Geneva in writing; all these reports will soon appear on this UN page. As far as Privacy First is aware, this has not occurred on this scale before. Therefore, for the first time in history the privacy theme figures prominently in a UN report about the Netherlands, as a matter of fact more prominent than is the case in other summaries, for example the one on the United Kingdom. Furthermore, it’s striking that the UN cites a passage about profiling from the Privacy First report: ‘‘digital profiles can be extremely detailed and profiling can easily lead to discrimination and 'steering' of persons in pre-determined directions, depending on the 'categories' their profiles 'fit into' and without the persons in question being aware of this.’’ (UN summary, para. 65). All of this can rightly be called a breakthrough that will hopefully bear fruit during the upcoming session on 31 May 2012.
Update 23 May 2012: In recent months Privacy First has had a series of useful conversations with foreign diplomats in Geneva and The Hague. Meanwhile a number of so-called ‘advance questions’ by UN Member States have appeared on the UPR website of the UN. Among them is the following question by the United Kingdom to the Netherlands: ‘‘Given recent concerns about data collection and security, including the unintended consequences of cases of identity theft, does the Netherlands have plans for measures to ensure more comprehensive oversight of the collection, use and retention of personal data?’’ (Source) Privacy First looks forward with confidence to further questions by UN Member States about Dutch privacy perils.
Privacy-wise these are turbulent times. Partly because of the pressure by Privacy First, a positive change is ongoing since last year. Privacy is higher up on the Dutch political agenda. Dutch media more often and more extensively report on privacy matters. This enhances privacy awareness among the Dutch population. It also reinforces our democratic constitutional State. Examples of positive developments are the abandonment of the electronic toll system (no ‘espionage units’ in cars), voluntary instead of compulsory ‘smart energy meters’, voluntary instead of compulsory body-scans at airports, abandonment of the storage of fingerprints under the Dutch Passport Act and the introduction of Privacy Impact Assessments for new legislation that invades the privacy of citizens. All of these developments go hand in hand with Privacy First’s motto: ‘‘your choice in a free society’’. Meanwhile, privacy restricting forces from the old days still have their say. Bad habits die hard. In recent months this became particularly obvious through developments towards a private restart of the Dutch Electronic Health Record (Elektronisch Patiëntendossier, EPD). Earlier this year the Senate had rightly binned the EPD. Apparently some policy makers and commercial parties are having none of this. With similar stubbornness others are currently trying to press through their old plans for Automatic Number Plate Recognition (ANPR) and camera surveillance along the Dutch border. These plans were already on the drawing board years ago, in a time in which privacy increasingly seemed to become a taboo. A time in which the American Bush administration was able to burden the entire European Union with biometric passports and associated databases. That time is over, but the heritage of that era still exerts its influence to this day...
In the meantime privacy is back where it once was. Privacy is the ‘‘new green.’’ In that respect advocates of the national EPD and ANPR are behaving like a bunch of old environmental polluters. They’re like rusty old factories from the 70s being teletransported to the year 2011, without them realizing it. The Dutch House of Representatives seemed to have a good sense for this when last week it unanimously accepted a motion about something that Privacy First has been emphasizing since its foundation: ‘‘Privacy by Design’’. In other words, incorporating privacy from scratch in a technical sense, at the micro level, through Privacy Enhancing Technologies (PET). In the view of Privacy First, however, the principle of ‘‘Privacy by Design’’ also applies to the meso- and macro-levels. That is to say, in an organizational and legislative sense. After all, this is the way you get to a privacy-friendly design as well as a privacy-friendly reality of a sustainable information society as a whole. Well, you can pursue your own line of thoughts here. As a source of inspiration Privacy First is pleased to provide the entire text of the parliamentary motion:
The House of Representatives,
on the advice of the deliberation,
considering that in ICT projects of the government there is too little attention for the protection of privacy and too little attention for the prevention of abuse of these systems;
considering that the privacy of citizens is not to be invaded any more than is strictly necessary and that insecure systems can put privacy in danger;
considering that systems that can easily be hacked seriously affect the reputation of government;
considering that modifying systems to safeguard privacy and enhancing security afterward, is usually more expensive and more often leads to a lower level of protection compared to when privacy and security are prerequisites from the outset of the project;
requests the government to apply privacy by design and security by design in the development of all new ICT projects in order for new ICT systems to be more secure and better prepared against abuse and only to contain privacy-sensitive information when strictly necessary,
and proceeds to the order of the day.
This afternoon Privacy First sent the following letter to the Electronic Health Record spokespersons in the Dutch House of Representatives:
‘‘Dear Members of Parliament,
Recently the Senate, quite rightly, unanimously rejected the legislative proposal to introduce a national Electronic Health Record (Elektronisch Patiëntendossier, EPD), especially in light of the enormous privacy risks this EPD would entail. It is therefore with great concern that Privacy First has taken note of developments that indicate a possible restart of that very same EPD along a private, extra-parliamentary route. Such a restart is not only disdainful with regard to our democratic process, it is also a denial of the risks and worries on the basis of which a legal introduction of a national EPD recently did not go ahead. To this end, Privacy First makes an urgent appeal to you to call a halt to this development and to call the relevant persons in charge to account. From a privacy-legal point of view, Privacy First is of the opinion that the Dutch government remains unabatedly responsible for any privacy-infringements that will result from a private, national EPD, especially in light of the fact that such a system has been emphatically rejected by the Senate for privacy reasons.
In line with the recently adopted Franken motion, in this respect Privacy First also urges you to have an independent, public Privacy Impact Assessment (PIA) carried out as soon as possible with regard to both 1) a national EPD as envisaged by the private parties involved as well as 2) possible alternatives for this national EPD. In carrying out this PIA, necessity, proportionality, subsidiarity and freedom of choice are to be guiding criteria. Privacy by design and privacy enhancing technologies, among which for instance technologically advanced patient cards or personal health records, are to fulfil an important role in such a PIA. Until the moment the PIA has been rounded off, no irreversible steps towards a private restart of the national EPD are to be taken.
In the view of Privacy First, the National Switch Point (Landelijk Schakelpunt, LSP) of the national EPD is to be transformed to small-scale, regional systems in accordance with the desire of the Senate. For regional exchange of data an LSP is unnecessary: to this end regional switch points are sufficient, possibly complemented by supra-regional 'push-communication'. This enhances security and reduces the risks of abuse that are inherent to a national EPD.’’
This afternoon a long-awaited irrevocable decision has been made: the introduction of the national Electronic Health Record (Elektronisch Patiënten Dossier, EPD) was unanimously rejected by the Dutch Senate. After 14 years and spending 300 million euros, the national EPD has ended up where it should have been years earlier: at the Scrapyard of Draconian Laws. Two years ago the Dutch House of Representatives accepted by a large majority the same plan for the national exchange of very sensitive patient’s data: almost all of the large Dutch political parties, namely PvdA, GroenLinks, D66, VVD, ChristenUnie, SGP and CDA voted in favour. This afternoon all these parties made a historic U-turn. Even the Christian-democratic CDA now seems to be cured. Progressive insight? Who knows... In any case, this development fits in with a wider trend that has been ongoing for a year and which sees politics being increasingly considerate about the privacy of citizens. Privacy First welcomes this development and expects that many other privacy-violating laws will equally be rejected.