For private data protection associations, it is a real hold-up that is being organized across the Channel almost without the knowledge of the general public.
Health Minister Matt Hancock has demanded that general practitioners affiliated with NHS England (the national public health system) share the health data of 55 million English people they hold, to be centralized from ‘here at 1er July, and can be used for research purposes by public bodies as well as private companies. Other UK NHSs are not affected by this project.
The decision was taken discreetly in the course of the spring, with NHS Digital, the NHS ‘health data management arm, contenting itself with a press release dated May 12. Patients have until June 23 to claim a opt-out, so that their data is not shared.
To do this, they must send a letter to their medical center, or “GP” (in the United Kingdom, to benefit from free NHS care, each resident must register with a doctor’s office in their neighborhood). The forms can be downloaded from the NHS Digital site, but this possibility of escaping the upcoming giant collection has not been widely publicized. The NHS, however, knows how to communicate well: the British vaccination campaign, extremely effective, is the last proof.
“No transparency on the use”
“It’s completely crazy! The NHS Digital has given GPs and patients just six weeks to turn around. While we are still in the midst of a pandemic. It is still very sensitive personal information: your mental, sexual and physical health, everything that is shared in the secrecy of a doctor’s office. However, we have no transparency on the use that third-party companies will make of the data, nor who their end users will be ”, chokes Phil Booth, founder of medConfidential, one of the associations trying to alert on the government project.
“The NHS Digital ensures that this data will be anonymized. Software is supposed to hide the link between medical or hospital acts and the identity of the patient [son numéro d’identification NHS et sa date de naissance]. But this software is controlled by the NHS Digital ”, explains the activist.
Is this initiative, unprecedented in its scope, only legal? NHS Digital was created in 2013 with the goal of collecting data from city doctors and hospitals, but “The hasty way in which the project was decided and the little time left for the data holders seem to really contradict the General Data Protection Regulation [RGPD], which was transposed into UK law before Brexit ”.
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