HHH Patients’ files project: survey report is out now

MA student Eileen van der Burgh (Erasmus University) has completed the survey report that is part of the HHH project “Patient’s files and privacy in medical history”. The survey – made financially possible by the Stichting Historia Medicinae – takes inventory of current ethical, legal and practical frameworks regarding patient’s files, of archiving practices of such files in healthcare institutions and of their use for historical research.

Patient’s files are a rich source for medical historians, but they are also subjected to doctor-patient confidentiality. During the HHH workshop on the subject held in January, 2021, we took inventory of current practices and came to the conclusion that researchers feel insecure in these matters. The survey has uncovered that archiving practices are also not optimal for the institutions that hold them. Most files are kept in storage facilities, unaccessible to researchers.

Besides discussing the ethical and legal limitations and possibilities, the report suggests ways to improve current archival practice. Patients’ files are held in many different locations, such as hospitals, private clinics and general medical practices. University medical centres (UMCs) are in an exceptional position, as they are legally obliged to keep patients’ files for 115 years. An idea for future archival practice might be to transfer such files to regional archival institutions after this period.

The report answers a number of questions, but it also raises new ones and sheds light on which follow up steps to take. When access to medical files for historical research is improved, it is important to put a code of conduct in place for how to deal with the information that is found in them. The survey report is thus a necessary step towards formulating guidelines that allow medical history research while respecting the privacy of individual patients. The HHH board is planning a follow up workshop or round table to discuss the report with our members and decide how to move forward.

Download the report (in Dutch) here.