Illegally collected health data will not be deleted under Danish law
Despite official confirmation that an illegal health database in Denmark must be deleted, a copy is to be placed in the National Archives for the future use.
An illegal database containing highly sensitive health data located in Denmark has become subject of grave concern amongst a large number of Danish general practitioners.
For seven years, data from all patient records were transferred from general practice records to a central database called DAMD, based on the Danish Data Capture Project.
‘In reality, data on all patient records were collected, including data on diagnoses, laboratory findings, references and fees.’
On a daily basis, data on an estimated 100.000 patient contacts were collected, in total approximately 40 million entries of health data. The data was collected systematically, and without obtaining informed consent from the patients involved. Such extensive data collection is illegal under Danish legislation.
For seven years, while data collection continued illegally, authorities attempted to legalize the Danish Data Capture Project. It has not been possible.
According to Danish law it is only legal to collect confidential health data without patient consent under very limited conditions, i.e. if data concerns important, expensive or potentially life endangering health issues. In addition, such data can only be collected for well-defined illnesses or treatments, and data has to be collected on valid parameters.
Accordingly, the Danish Data Capture Project has been approved to collect data, without consent, concerning Type II diabetes (Type II DM), chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) and depression.
However, the data actually collected reached far beyond what was approved. In reality, data on all patient records were collected, including data on all 704 possible ICPC codes for diagnosis, laboratory finding, ICP references and fee codes.
During the autumn of 2014, journalists have uncovered the issues surrounding the Danish Data Capture Project. On the 11th of December, the Danish authorities confirmed that data, except data concerning Type II DM, COPD, CHF and depression, were indeed collected illegally and must therefore be deleted.
However, before deletion it is planned to place a copy of the Danish Data Capture Project in the National Archives for future scientific use.
If the data is transfered to the National Archives, researchers can regain access to the data through research proposals to the archive, and in 75 years the collection is made open to the general public.
Moreover, if the practice of after-the-fact legalization of illegally collected data by way of the National Archives becomes a generalized practice, data protection legislation will be no more than a historical curiosity to be found in same archives.
Edited from a letter by Thomas Birk Kristiansen, MD and Trine Jeppsen, MD.
