New EHR law still threatens to open up all records

Health minister Schippers wants to make generic consent the standard for now in her new EHR law, which would make patient records accessible to all healthcare providers connected to the system with a single consent. In doing so, she ignores the wish of the Lower House, which deleted this form of consent from the original bill due to privacy concerns. The Senate should not let that happen, writes our Specific Consent campaign in a letter to the Senate, which will soon consider the bill.

The bill Client rights in electronic data processing (33509) is the successor to the SPD Act, which was unanimously rejected by the Senate in 2011 due to privacy concerns. Files became accessible to tens of thousands of healthcare providers and their staff, without prior check by the file-keeping doctor.

In the new SPD law that Schippers presented in 2014, although patients had to give prior consent to make their data available, this consent was so broad that both doctor and patient had no visibility on who could access which data for which purpose. The Lower House found this unacceptable. Generic consent, or providing access to all healthcare providers connected to a system with a single authorisation, was removed from the bill in July 2014.

In response, the minister presented a new form of consent: specified consent. Unlike this term suggests, this form of consent also amounts to a carte blanche, so substantiated Specific Consent already extended to the Senate earlier. In the expert meetings and discussions in the Senate, it subsequently became clear that Upper House members also had many question marks over Schippers' specified consent.

However, these objections seem premature now that this form of consent does not appear to be feasible at all. Current systems to exchange medical data with, of which the National Switch Point (LSP, the former EPD) is best known, are in fact not set up in their design to allow patients specifically to have data shared (including with specified permission), so informed the minister told the House of Representatives last December. Before there is a way to make more targeted data available, the minister wants patients to have at least three years of broad, generic consent, which, once given, remains valid thereafter.

Fundamental objections Upper and Lower House ignored

The Specific Consent campaign has been following the bill closely since its introduction, and pointed out the Senate in a letter insisting on the fundamental objections to generic consent.

"Specific Consent believes that the current legislation - Wgbo and Wbp - is a good basis for requesting consent in healthcare, and finds generic consent - even 'temporary' for three years - unacceptable. Generic consent cannot meet the requirements imposed by law and treaty on the sharing of medical data due to lack of clarity for both patient and file-keeping doctor.", the campaign previously stated.

Our campaign suggests to Senate members that either all articles on consent be removed from the bill so that medical data can be shared on the basis of pre-existing legislation, or that consideration of the bill be postponed until it is clear what impact the specified consent of the minister's concern for patient privacy.

The Upper House held yesterday a so-called further procedure on the bill, and decided therein to make further consideration dependent on the timeframe and how the Senate can be informed about questions still pending before the House. The Specific Consent campaign will provide the Senate with further input in due course.

Download HERE the letter that Specific Consent sent to the Senate early this week (pdf) and click HERE for the above message as published yesterday on the campaign website.