E-Health in the Netherlands: Lessons learned
As part of our #SmartHealthSystems study which examines the digital transformation of healthcare systems in 17 countries, we have visited five of these countries to take a closer look at what they have achieved. In each country, we have explored the political, cultural, technological and economic factors driving success as well the obstacles to advancing digitization strategies in healthcare. The findings of our cross-national study will be published in November 2018. Until then, we will be highlighting thought-provoking insights and best practices from other countries here in our blog. Our third contribution from the Netherlands shows what political consequences misjudging the situation can have and the disadvantages of purely technology-driven advances – and why Germany still has much to learn from its neighbor to the West when it comes to e-health.
To be sure, the Dutch have taken on an ambitious goal: According to the agenda declared by the Dutch Ministry of Health, Welfare and Sport in 2014, Germany’s neighbor aims to take the lead in implementing e-health. The agenda sets the following objectives to be achieved by 2019:
- 80% of the chronically ill and a minimum of 40% of the overall population should have direct access to their health and medical data. Regardless of the type of information, whether it’s medication data, information regarding vital functions or test results – patients should be able to use all their data in digital apps or web portals.
- 75% of chronically ill patients and older patients should be able to perform certain kinds of self-examinations. This includes measuring blood pressure, blood sugar levels or weight. Telemedicine channels should play a greater role in monitoring these indicators.
- Patients who receive care and support at home should be able to communicate with medical professionals around-the-clock via a screen. In addition to video consultations, home automation and monitoring systems should be implemented.
In certain areas, such as healthcare provision cost and quality assurance, the Dutch system is in fact a model for many other countries. The Netherlands also numbers among the top countries in the world in terms of its affinity for new technologies, a fact they are proud to share: “Thanks to their innovative, creative and entrepreneurial spirit, the Dutch are widely regarded as innovators in e-health,” as was stated in a brochure published by Health Holland, a government organization tasked with communicating health policy in the Netherlands.
A fragmented system without a uniform e-health strategy
A close look at the Netherlands reveals that although e-health is writ large in the country as it moves forward with the digital development of healthcare and remains ahead of Germany in many aspects of digitization, this seemingly advanced state of affairs is to some extent misleading. For one, evaluations point to a considerable gap between the range of e-health solutions on offer and the extent to which they are actually used.
For another, the political path to digital healthcare has been anything but straightforward. For a long time, the Netherlands lacked a stable framework or a national e-health strategy such as that pursued in Denmark, for example. Until the late 1990s, various authorities within the Dutch health system worked relatively independently of each other and without coordination on the development of information and communication technologies (ICT). Then, in 2002, the National ICT Institute for Healthcare (Nictiz) was established as a centralized body of expertise on e-health issues.
Funded by the Ministry of Health, Welfare and Sport, Nictiz is a private-sector organization whose board of directors include experts from the field and individuals who represent both service providers and patients. The ministry commissioned Nictiz to establish a nationwide digital infrastructure (AORTA) that would foster the secure and reliable exchange of medical data between various service providers. By 2011, the infrastructure for these national standards of electronic communications were completed and included nearly 50% of all Dutch patients’ data records.
However, the political tactics employed in pursuing the project proved a failure: The ministry submitted to parliament its digital transformation objectives in the form of a draft law only after having already built up the infrastructure. Key features of the draft law included implementing AORTA nationwide and the cross-institutional use of electronic health records.
Weak transparency and fears of political paternalism
There was, however, a major problem with the draft legislation: it called for both the centralization of data storage and an opt-out solution for patients. This meant that, as is currently the case with organ donation, patients would have to explicitly declare that they reject registering for AORTA and the use of electronic health records. For physicians and pharmacists, participating in AORTA was more or less obligatory.
However, the Dutch health care system is based on the principle of self-governance. Obligations of this nature that are stipulated by a ministry are rare. In addition, the operation of many facilities and institutions is largely left to the private sector. And hospitals in general do not like to have specific IT solutions dictated to them. The ministry thus drew considerable criticism, particularly from service providers.
And the upper house of parliament, the Dutch Senate, ultimately overturned the legislation, even though it had passed through the House of Representatives. Even today, some of those involved speak of a “traumatic experience” that continues to shape the debate.
The Senate vote resulted in denying the ministry any authority over ICT infrastructure developments, rejecting an opt-out solution for citizens and the creation of a decentralized data exchange infrastructure that artificially regionalizes communication in the system. In addition, Nictiz was required to destroy the eight million patient data records it had collected so far. For several years thereafter, the concept of “electronic health records” had become a near dirty word. To make matters worse, the several hundreds of million euros that had been invested in AORTA now appeared to be for naught.
Despite the AORTA fiasco: E-health structures are still far ahead of the game with respect to Germany
But how do things look today, seven years after the AORTA fiasco?
The project survived, in large part because it was placed in the hands of a self-governing body, the Union of Providers for Healthcare Communication (Vereniging van Zorgaanbieders voor Zorgcommunicatie, VZVZ). Financed by insurance providers, VZVZ is tasked with ensuring the safe and seamless exchange of medical information through the so-called National Switch Point (landeliijke schakelpunkt, LSP), whereas Nictiz is tasked primarily with creating standards for the flow and exchange of data and monitoring their development.
Health service providers such as clinics, practices and pharmacies can decide for themselves if they want to connect their information systems with the national switch point, or LSP. However, their patients must first agree to opt in to the system before providers can allow medical data to be included in the LSP.
If a patient needs to go to the hospital, their general practitioner refers him or her to a clinic specialist – digitally. Communicating digitally, the hospital then sends the patient an appointment and, following their visit, sends the data regarding their treatment to the general practitioner’s office to be included in the patient’s electronic health records. Data and information regarding medications, too, are transferred digitally. And if a patient arrives with information on a slip of paper, this is entered into the system so that every acting physician or practitioner can access it. Patients, too, have access to their records and can view all relevant information.
Although this form of data exchange is limited to local or regional environments, the Netherlands are still far ahead of the game with respect to Germany in terms of their e-health structures – and this despite the political fiasco of 2011.
As of 2014, the ambitious former Minister of Health Edith Schippers also helped advance the cause of e-health in the country by ensuring that more than €100 million has been invested since 2015 in promoting patients’ digital access to their medical records. The ministry also commissioned Nictiz to monitor and evaluate progress made on digitization issues. Since 2012, the “eHealth Monitor” has published an annual report on developments in the field.
The most recent report (2017) shows, however, that actual use among patients is lagging, especially considering the ambitious goals set for the coming years. Our #SmartHealthSystems study also shows a similar finding. This can in large part be explained by the fact that many patients are simply not aware of the opt-in model and that they are required, for example, to allow their local pharmacist to digitally share their medication plan with the hospital. As a result, much of their information is outdated. This shows just how a seemingly small check marking a declaration of consent can become a major obstacle when it comes to instituting electronic health records.
Citizens’ data sovereignty
According to the “eHealth Monitor,” less than one-third of the users surveyed said that they had been informed by their healthcare provider of the opportunity to participate in the exchange of digital information. At the same time, a good 50% of all users expressed their interest in this option.
In an effort to combat this imbalance while allaying fears regarding data privacy issues, the MedMij project was launched, partly as a result of Minister of Health Schippers’ efforts. However, in the Netherlands, given the poor experience with “electronic health records,” the organizers of MedMij prefer to speak in terms of a patient portal. As such, and because there is currently no cross-institutional solution, MedMij is designed to offer patients digital access to their medical records. Using a MedMij app, citizens are to have easy but secure digital access to their health records and should be able to add information or share it with healthcare service providers. Together with Nictiz, MedMij is intended to serve, over time, as a modern, citizen-centric gateway to the entire healthcare system.
Yet MedMij is still in the prototype phase and is undergoing testing in the region of Nijmengen because it is based on standards that differ from those used by the LSP. Nonetheless, the vision for the future sees MedMij giving patients sovereignty over their data and enabling their around-the-clock access to their personal health records. Everything from making appointments to viewing labor and test results should be made possible by MedMij.
The example of Denmark and its national health portal sundhed.dk shows that implementing such portals is a workable possibility. The Netherlands may have a long road ahead of them, but the course has nonetheless been set. Indeed, the fact that there are now increasing calls for a show of stronger political commitment and regulation on the part of the ministry is nothing short of a political turnaround when one considers the state of affairs just a few years ago. The ministry now has its own Directory for Information Policy with a staff of 30. In addition, the government is resolute in addressing skeptics to convince them of the advantages inherent to such a system. Recently, a group of Amsterdam physicians who had filed a lawsuit against AORTA/LSP that reached the country’s highest court, lost their case. This sent a strong signal for the Netherlands in its efforts to become a role model in the area of e-health.
Note: This blog post was written in cooperation with Cinthia Briseño. She supports on-site research for the survey #SmartHealthSystems with her journalistic contributions to our blog.
The study is carried out by empirica Communication and Technology Research on behalf of the Bertelsmann Stiftung.
Follow us as we take a closer look at e-health developments in various countries for our study throughout the course of 2018.
We will publish the full results of our international study in November 2018. Until then, we will be highlighting thought-provoking insights and best practices from other countries here in our blog. If you are interested in keeping up-to-date with our latest analyses, we recommend that you sign up for our email newsletter: