On 1 November 2008, all Dutch households received a letter and a brochure from Dr. Ab Klink, the minister of Health.
In this letter the minister informed the citizen about the upcoming introduction of an EHR and the exchange of data that will be the consequence of the use of EHRs. He also offered the citizen the possibility of a general opt-out of the exchange before December 15, 2008. An immens amount of turmoil was the consequence.
Confusion
Parliament is not happy with this letter and considers it premature, as the legislation process for the introduction of an EHR has not been completed yet.
Hundreds of people reacted on various websites. And most reactions were negative, some even extremely so. If these reactions were to be considered representative for the general opinion, The Netherlands would opt-out massively. Unfortunately this is, maybe for a major part, due to the fact that most readers seem to assume that they can opt-out of having their data stored electronically.
Information
However, the Dutch citizen has not been properly informed about what an EHR is, how it functions nor how privacy is guaranteed. No clarity has been given about who will have access to an EHR. The rules about consent are vague, to put it mildly.
Access
The documents seem to indicate that every and any caregiver will have access to the information. The citizen is given the possibility to opt-out completely. No information is given about the consequences of such an opt-out (nor of the benefits of an opt-in).
Little is said about giving specific access, i.e. access to specific caregivers and/or specific parts of the record. Some information is given about excluding specific information from general access, but those procedures are not entirely clear.
The patient can not access the record himself. Only a caregiver can grant him the possibility to view the record or receive a print out, and only on specific request from the patient. There is no guarantee that this will be a view of all information in the record, as the caregiver is entitled to exclude “his own thought process” from that information. Unfortunately, no definition is given of what is included in this thought process. So a preliminary diagnosis might be considered part of this thought process and therefore be excluded from the information shown to the patient.
There is no possibility for the patient to add or correct information.
Consent
The letter also indicates that each caregiver has to ask a patient for consent during his first visit. However, nothing is mentioned about official written registration of the consent (positive or negative), which seems to leave the patient with too little legal protection.
The letter refers the patient to their GP or pharmacist for more information about consent or opt-out. Which, of course, is not their task, nor will they have the time.
Conclusion
Apparently, the ministry failed to make the most important step in the introduction of a Dutch EHR, the supply of information to the people about benefits and possible draw backs and about the various procedures (access, consent, opt-out) involved in order to raise awareness and appreciation of these new developments.
Lodewijk Bos
for more see the ICMCC Dutch website.
