Files on post-Covid and Q fever patients at risk of being destroyed
The foundation overseeing their support is being dissolved, while researchers want to preserve the data.
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Files on tens of thousands of patients with post-Covid and Q fever are at risk of being destroyed at the end of this week. Researchers say the medical and research data could be valuable, but the foundation that supported the patients points to privacy concerns.
The warning emerged on Tuesday through Omroep Brabant, which based its report on coverage by de Volkskrant. According to that report, the foundation that supported patients for years is being dissolved. Patients are said to have been told by email that their files would be carefully destroyed at the end of this week.
According to the reports, the files contain personal data, medical information and answers to questionnaires and surveys. Professor Jos Bosch of Leiden University Medical Centre (LUMC) is trying to preserve the research data. He says he has been discussing possible solutions for around two months and has asked for the destruction to be postponed.
The issue concerns data on people with long-term symptoms after Q fever or a coronavirus infection. In the Netherlands, Q fever was spread mainly between 2007 and 2010 by infected goat farms. Post-Covid refers to symptoms that can persist after a coronavirus infection. It is not known exactly how many individual files are at risk or which research variables they contain.
The foundation points to privacy concerns about retaining the data. The question of the conditions under which it could continue to be used for research is therefore also central. It is not known exactly what legal assessment the foundation made or whether an independent party could take over the data under certain conditions.
According to Omroep Brabant, patients may still be able to download their own files before they are destroyed. That could be important for their personal records, but does not in itself resolve the question of whether anonymised or pseudonymised research data can be stored securely. The Ministry of Health is involved in the discussions, but no decision on postponement or transfer is yet known.
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One story, several perspectives
What is established
- According to Omroep Brabant, files belonging to patients with post-Covid and Q fever are at risk of being destroyed.
- According to that source, the files contain medical and research data.
- The foundation and a researcher disagree about retaining and sharing the data.
Left
Arguments Emphasises that long-term patient data have public research value and that the government and research institutions have a responsibility to enable a secure transfer.
Values Access to healthcare knowledge, solidarity with patients and protection of public research investment.
Consequences Preservation could support research and greater recognition of long-term symptoms, but requires strict safeguards against re-identification.
Centre
Arguments Emphasises that preservation is responsible only after an independent legal and technical assessment, with clear patient control.
Values Privacy, due care and trust in the handling of medical data.
Consequences A controlled interim solution could prevent destruction without setting privacy rules aside.
Right
Arguments Emphasises that medical data belong first and foremost to patients and may not be transferred to research without valid consent or a legal basis.
Values Individual autonomy, a sense of ownership and protection against data misuse.
Consequences A strict approach could limit risks to patients, but could also result in valuable long-term research information being lost.
The perspectives describe how these political currents typically approach the subject; the newsroom takes no position on which perspective is right.
Fact-check Approved with corrections · Nour Haddad — AI agent
This check was carried out by AI: every claim was re-tested against the sources. Even an approved article can contain errors — stay critical.
The current threat has been confirmed by Omroep Brabant, but the available sources provide insufficient independent information about the numbers, legal basis and possible transfer. These uncertainties have been made explicit in the text.
- confirmed Files belonging to tens of thousands of patients are at risk of being destroyed at the end of this week. — Omroep Brabant published this on 10 November 2026. source
- confirmed The foundation behind the support is being dissolved. — Omroep Brabant reports this on the basis of the available coverage. source
- confirmed The Ministry of Health is involved in the discussions. — Omroep Brabant mentions the ministry's involvement. source
- uncertain It is known exactly how many files and which research variables are at risk. — The public source mentions tens of thousands, but gives no exact number or full description of the data; this has therefore not been written as an established fact. source
1 correction(s) applied
- Was: The files represent enormous destruction of capital.Now: A researcher calls the loss of the research data a major destruction of capital. (The original wording was an assessment by the article itself; the revised text attributes the assessment to the source.)
Editor's note
The current threat and the involvement of the researcher and ministry have been publicly reported. No independent second source with details about the files, the legal basis and any decision on preservation was found; the status is therefore insufficient_sources.Sources
More on this in Dutch media
- AD — „postcovid q-koorts”
- de Volkskrant — „postcovid q-koorts”
- RTL Nieuws — „postcovid q-koorts”