HHH workshop Jan 12: Patient’s files – how to move forward

Irene Geerts

Patient’s files are a rich source for medical historians, but they also present us with a dilemma: does respecting privacy considerations mean refraining from using them for research at all, or can we design methods and practices that protect the privacy of individuals, but allow historical research on groups? On January 12, 2021, HHH organised a workshop on this question, taking the inventory of the issue and looking for ways to move forward. HHH aims to follow this up with a project to design national guidelines.

National action for conservation necessary

Joost Vijselaar, professor of the history of psychiatry at Utrecht University, is perhaps the most experienced patients’ files researcher in The Netherlands. Archives of Dutch psychiatric hospitals, he observes, are being destroyed much more than before after the legal retention period of ten years as a consequence of an increasing privacy awareness, especially since the introduction of the new privacy law AVG in The Netherlands in 2018. To the detriment of medical history research: patient’s files, in Joost’s experience, are a unique and irreplaceable source that reflects care practices in a very detailed way, even with the bias they inevitably have. Aggregated data from such files to him are the basis for research into the social history of health care.

Since the 1980s several initiatives have been taken to stimulate and facilitate the conservation of patients’ files for research purposes. In these projects guidelines and conditions for use were developed, such as a confidentiality agreement between archive and researcher, anonymization and reviewing the manuscript on confidentialy issues before publication. As the volume of files is very large, an important part of this is how to select a useful sample. As the use of digital files makes destruction even easier, Joost pleads for renewed action on the national level.

Importance confirmed by Minister of Justice

Such collective action can take inspiration from a recent good practice.  The Dutch Minister of Justice has recently agreed with the advice of the Dienst Justitiële Inrichtingen (DJI, Custodial Institutions Agency) to preserve a large sample of TBS patients files (inmates in forensic care) in an archive. Senior policy advisor Serge Boekhoorn of the DJI observed an increasing awareness in his organisation over the last five years that it is important to consider how it creates data, how to deal with them and how long to keep them. The new conservation policy gives clarity on these matters. By undersigning it, the Minister has confirmed the importance of conservation of such files for historical research. Part of the policy (and a legal requirement) is a selection list that makes choices transparent. The list is now available for inspection by the public; citizens who do not agree can send in a formal objection.

Patients’ files and medical heritage

Medical heritage curator Ruben Verwaal of the Erasmus Medical Center in Rotterdam highlighted the importance of the conservation of patients’ files as sources of information on objects. Without patients’ files, Ruben explained, medical heritage finds run the risk of dissociation: if nobody knows how an object was used, it loses its meaning and importance. Still, this academic hospital is obliged to destroy files at some point, Ron Grandia, advisor and collection manager at the Documentaire Informatie Voorziening (Documentary Information Service) explained. It is preparing to do so for the first time, as the volume is immense: there are over 10,000 patient’s records that nobody ever asks for. Taking a sample based on a selection list like that of the DJI may be helpful here too. Ron pointed out that the urgency for a clear policy is even greater in general hospitals, where the retention period is only 15 or 20 years, a stark contrast with the 115 years that are applied to academic hospitals like his own.

When the Dijkzigt Hospital in Rotterdam (the predecessor of the Erasmus MC) was recently demolished, this panel with 70 test tubes was found. The tubes hold a puzzling collection of beads, caps, coins, splinters of wood and bone. Through research in patients’ files, Ron Grandia discovered that this collection belonged to ear-nose-throat specialist Pim Struben: these were the objects he removed from patients’ bodies. Left to right: Hanna Verhage (Oranje BV) who found the panels, Ruben Verwaal and Jan Huijben (Erasmus MC collection).

Conservation and ethics

In the discussion that followed quite a few participants wanted to take a step back from laws and regulations and consider ethics first. Is it ethically acceptable to study patients’ files at all; if we do, what are ethically acceptable ways to do so; and are patients themselves part of the drawing up of guidelines? In part, the current laws on privacy, medical files, and the Archiefwet (Archive Law) provide answers to these questions, but the bottom line lies in the weighing of interests: individual privacy versus the collective greater good of historical research.

Others felt it unnecessary to reinvent the wheel and plead for starting from existing reports and policies in order to figure out how to implement those within the current legal framework. Joost advised against trying to solve these issues within the circle of historical researchers first, but instead suggested installing a high level commission representing a broad coalition together with mental health care organisations, patients’ organisations and authorities like the Health Inspection and ZonMw. The protection of the individual to him lies not in making files inaccessible, but in the conditions under which research takes place. Contrary to popular belief, the AVG privacy law is actually helpful in the ethical considerations involved in this, two participants with legal expertise added. And drawing up guidelines is indeed urgent, or hospitals will each devise their own policy and possibly be unnecessarily rigorous in destroying archives.

HHH secretary Timo Bolt concluded from the discussion that many researchers feel insecure in these matters and wish to come to general guidelines together instead of having to figure them out on their own. He suggested to try to make this a project and find the financial backing to hire someone to take the lead. Several participants volunteered to stay involved as well. To be continued…

Suggestions? Questions? Please send an e-mail to Timo Bolt.

HHH library – Patients’ files and privacy

Selectielijst van het Ministerie van Justitie en Veiligheid en rechtsvoorgangers vanaf 5 mei 1945, ter inzage tot uiterlijk 14 februari 2021 (selection list of the Ministry of Justice and Safety, available for inspection until February 14th, 2021)

Over tien jaar over gisteren. Tbs-dossiers: bewaren of vernietigen? (advice of the ad hoc committee conservation policy tbs files, 2016)

Serge Boekhoorn and Hugo Kabos, Archief in bewaring. Een herwaardering van veertig jaar informatie over de tenuitvoerlegging van straffen en maatregelen, 1976-2016 (DJI, 2018)

VSNU Code of conduct for using personal data in research (Dutch universities)