News on the issue of patient files preservation
The KVAN (Koninklijke Vereniging Archiefsector Nederland, Royal Association of the Archive Sector in the Netherlands) and the KIA (Kennisnetwerk Informatie en Archief, Knowledge Network Information and Archive) have recently published a guideline on how to grant public access to the archives of healthcare institutions; the Richtlijn Openbaarheid Archieven van Zorginstellingen. This guideline is first and foremost intended for archivists and archives themselves, and secondarily, for other institutions which consider transferring their collections to formal archives. It is available and downloadable here.
This new guideline draws heavily on the survey document that was published under the umbrella of HHH on patient files and privacy in historical research. The efforts of several HHH members to put this issue on the agenda have therefore been fruitful.
Noor Schreuder, senior lawyer at the National Archive, published an interesting blog about the main juridical issues concerning access to patient files, for example for historical research.
Both the new guideline and this blog suggest that the legal situation differs for old patient files (before 1995) and more recent patient files (1995 and later). If the documents were formed and the files closed before April 1, 1995, they can be transferred to an archival institution for permanent preservation, on the basis of the principle “archiving in the public interest”, like all other archives of social and historical importance. After transfer to an archive repository, all documents, even if they are from private institutions, fall under the Archives Act and the GDPR, General Data Protection Regulation of the European Union. A restriction on their accessibility, of 100 or 110 years after the date of birth of the people involved, is then appropriate.
On April 1, 1995, the WGBO (geneeskundige behandelingsovereenkomst, Medical Treatment Agreement Act) came into effect. For patient files from after that date, the law seems to offer little or no possibilities to keep them in archives and/or give historical researchers access to them.
The KVAN intends to start a lobby, using their new guideline, to convince the ministeries of Health and of Education, Science and Culture to do something about this situation. They have asked stakeholders in the field, including HHH, to express their support for this work. The HHH board has endorsed their project.
It is difficult to say whether this lobby will be successful, as most juridical experts in the health sector may be in favour of a restrictive interpretation of the laws on medical confidentiality and privacy protection, which would imply destroying patient files rather than regulating their storage and access by (historical) researchers. However, it is a positive sign that the KVAN is aware of the problems regarding patient files and is willing to address them.