Senior doctors call on colleagues not to share personal data, in effort to buy time to raise awareness of plans
!Important!
NHS Digital is planning to give out everyone in the UK’s medical records, including some identifiable information, to third parties on the 1st of July.
This data includes information on “your sex, ethnicity and sexual orientation” and “clinical codes and data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals and recalls, and appointments, including information about your physical, mental and sexual health” (quotes from the NHS Digital website). The data will also include coded identifying information, such as your postcode, which is deliberately de-codable in case you need to be identified (e.g. by your own doctor). The guardian article above mentions that critics of NHS Digital’s plan have said that this anonymisation via encoding “can be easily reversed“.
The Guardian article says that the data “will be made available to the private sector and other researchers”, the NHS Digital website says that the data can be used by any organisations who “[show that they] have a legal basis to use the data and that it will be used safely, securely and appropriately” and who have been approved by the Independent Group Advising on the Release of Data (IGARD).
Currently the only way to not have your data shared is to opt-out by filling in a form available on the NHS Digital website and returning it to your doctors surgery (by post or email) by the 23rd of June.
The complete lack of any publicity means that most people have no idea that their sensitve data is going to be shared with outside organisations, without their explicit consent. If you know people in the UK, please let them know about this!
