Health scrutiny committee members have raised concerns about plans for medical records to be shared with third parties.
The proposed creation of a central NHS digital database containing the information of up to 55million GP patients in England has been criticised by medics’ organisations and campaigners.
It was supposed to begin on July 1 but the Government pushed the date back by two months to September 1 amid growing calls for the public to be given more time to learn about the system, what will happen to their personal records and how they can opt out.
Now South Gloucestershire councillors have joined the British Medical Association (BMA), the Royal College of GPs and digital rights advocates Foxglove in expressing alarm.
Labour Cllr April Begley asked at the committee meeting at Kingswood Civic Centre on Wednesday, June 9: “How have residents of South Gloucestershire been informed of the proposed setting up of the central database of patients’ personal medical records?
“As of yesterday, the date to opt out has been moved from June 24 to September.
“An article in the British Medical Journal advises against the scheme and neither the BMA nor the Association of General Practitioners supports this new scheme.
“I am aware of the centralised scheme being anonymised but this flies in the face of recent experience with the problems of the Irish Republic,” she said, referring to a ransomware attack that led to 520 patients’ sensitive information being published online in May.
Although data will undergo a process called “pseudonymisation”, NHS Digital, which is in charge of the scheme, has said it can use “de-identification” software to convert the anonymised records back again so it “could directly identify you in certain circumstances… where there is a valid legal reason”.
Labour Cllr Andrea Reid told committee members she was “troubled” by the confusion and misinformation over the database.
She said: “In a lot of the reports coming out about this sharing of data, it is apparent there is a lot of confusion about what is accurate information and what is not.
“And it’s not helped by the fact that included in many of these articles is an opt-out link which takes you to the NHS site which tells you it is misinformation.”
She asked what health chiefs were doing locally to ensure residents had consistent and correct information about the opt-out, a question which was not answered at the meeting.
NHS Digital did not respond to inquiries from the Local Democracy Reporting Service.
But South Gloucestershire Healthwatch website has information on its home page from NHS England explaining more and how to opt out.
It says patient data would be collected to “understand more about viruses and other conditions for planning and research”, including developing cures for serious illnesses such as heart disease, diabetes and cancer.
The site says the two-month delay was aimed at helping more people feel reassured about the proposals.
It says: “Data can only be accessed by organisations which will legitimately use the data for healthcare planning and research purposes, and they will only get the specific data that is required.
“But It is important patients who would rather opt out of sharing their data for planning and research purposes still have the right to do so through the National Data Opt Out and this delay will allow them more time to make this decision.”
Earlier this month Health Secretary Matt Hancock said the “vast majority of people” in England supported the plans.
Anyone who does not want their personally identifiable patient data to be shared outside of their GP practice for purposes except their own care can register a “Type 1 Opt-Out” with their surgery on this form.
More details can be found here.