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Privacy First signed up to participate in Healthcare Information Council

Last Friday, Privacy First Foundation applied to participate in the Healthcare Information Consultative Council. It would be the first time that an organisation with ANBI status would be admitted to the consultation body of the Ministry of Health, Welfare and Sport (VWS). However, Privacy First's ANBI status could also just be the stumbling block.

The Healthcare Information Council

The Healthcare Information Council is an administrative collaboration between, so far, only participants from the healthcare field and the Ministry of Health, Welfare and Sport. In the Information Council, the government and healthcare parties work together to create a basis in which healthcare data can be exchanged safely and reliably.

In the AO Data Exchange in Healthcare of 9 October last, Minister Bruins (VWS), at the request of MP Van Kooten-Arissen, indicated he would nominate Privacy First as a member of the core group of the Healthcare Information Council. The reason for this is an earlier motion from the House of Representatives calling on the minister to "actively involve privacy and civil rights organisations in the core group and expert communities of the Healthcare Information Council".

Privacy by design

Increasingly, we see references to privacy and the AVG as stumbling blocks to data sharing. In our view, privacy comes into the picture too late in policy development. Using 'privacy by design' can help prevent this.

Privacy by design ensures that privacy becomes a core component of products or services. During development, privacy becomes an integral part of the product or service without compromising its functionality.

Privacy First's ambition is to seek a sustainable embedding of privacy concerns in healthcare. We want to show how this can help make data sharing more effective and efficient and thus increase the quality of care.

Will it also happen?

As a result of the set-up of the Healthcare Information Council, the criteria for admission are primarily focused on interest groups representing doctors or patients. As a civil rights organisation and ANBI status holder, Privacy First is an 'odd duck'. This raises the question of how the adopted parliamentary motion relates to these criteria. Even more important is how the current members of the Information Council view this and whether they feel comfortable with Privacy First's participation.

In any case, our acquaintance with the Ministry of Health on 26 November last was a constructive and very interesting exchange of views on vision for healthcare. Our hope is that the current members of the Information Council will similarly look at our letter will watch.

We expect more clarity after a vote at the Healthcare Information Council on 10 February 2020.


Privacy Company, The seven principles of privacy by design

Healthcare Information Council, Motion by members Van Kooten-Arissen and Hijink

Open letter from Privacy First to the Healthcare Information Council (pdf).