Earlier this year, we led the concern that a new NHS data sharing plan would see every patient’s medical records uploaded to a new information system without the right to opt-out. We warned at the time that patient records would be out of patient control.
On Friday, the Secretary of State confirmed that this will not be the case.
Jeremy Hunt said on Friday: “”GPs will not share information with the HSCIC if people object…people will have a veto on that information being shared in the wider system”
He then went on to say that “We’re not going to cancel the opting out that has already happened. There may be a process of re-contacting people to explain the new arrangements, and that’s a detail which we’ll work through in operational terms. We will respect the people who have already said they wish to opt-out of any data sharing.”
We also understand people who opt out after their data has been uploaded will be able to have their data deleted.
This is a significant victory on both counts, and an important one. We believe that opt-in systems remain the best way to protect patient trust in their medical information being kept confidential, however given the new system goes live in a few weeks these two changes were essential.
It is absolutely right that the Government has affirmed its commitment to patients controlling their own medical information and respecting the choice of those patients who do not wish to have their medical records used for purposes outside direct care.
The concern remains, however, that patients have not been given adequate information about how this system will work or how they can opt out. We urge NHS England to rapidly address this and ensure patients are able to exercise this opt-out if they choose to and make clear how patients can inform the NHS of their choice without overburdening GPs with patients trying to opt-out before the system goes live.