- Less than 5,000 patients used the new system to prevent sharing of their confidential records beyond direct care
- Concerns that the vast majority of patients are unaware of the new system, despite “public campaign”
- Old systems for recording sharing preferences to be switched off, despite the continued high use
A new national system to give NHS patients control over sharing their confidential health records has been used by less than 5,000 people, leading to accusations that it has been poorly publicised.
The national data opt out went live on 25 May this year and gave every NHS patient the ability to opt out of sharing their personal health data beyond direct care.
At the time, NHS England said there would be a public campaign focusing to “ensure messages are reaching the public in a clear and accessible way”.
However, NHS Digital figures provided to HSJ show that in the four months to 1 October, only 2,185 people used the national opt out to prevent sharing of their confidential health records.
That number dropped sharply in the past two months, with only 306 people opting out in September.
More people used the system to opt in instead, with 2807 saying they now wanted to share more information after previously saying they did not.
The new system also remains far less popular than the old “type-2” opt out, set up in 2014 as part of Care.data and controlled directly by a patient’s GP.
Despite more than 26,000 patients lodging a “type-2” opt out with their GP in the three months to 1 September, that system will close today.
A total of 1.5 million patients have registered a type-2 objection since 2014 moving to the new system.
Several health sector sources told HSJ the uptake on the national opt out had been far slower than expected.
Sam Smith, of health privacy group MedConfidential, said NHS England had written to 1.5 million patients being shifted onto the new national system, but there has been little broader publicity.
“When are the 98 per cent of people out there going to find out this option is out there?” he said.
The new system still had shortcomings, he said, including making it more difficult for parents to opt out on behalf of their children.
However, King’s Fund researcher Harry Evans said the low levels of opt outs under the new system was positive.
Of more concern was continuing high level opt outs through patients’ GPs, which threatened service planning and research.
“Now the national bodies have implemented the national data opt-out, they should make it their mission to investigate why people are continuing to opt out via their GP practices, even when a national, simple and standardised opt out option exists.”
In 2014, NHS England came under heavy criticism for its lacklustre publicity campaign for the Care.data patient record sharing scheme in 2014. The scheme was eventually closed in 2016.
The new national opt out is viewed by NHS national leaders as critical to rebuilding public trust in data sharing but there is also concern that too many patients opting out could compromise the quality of data for research and planning.
A Department of Health and Social Care spokesman said efforts to inform patients about the opt out had included advertisements in most national newspapers, regional radio stations and leaflets and posters distributed for display in hospitals, GP practices and other care settings.
Tim Magor, national data opt out programme head at NHS Digital, said the old system had been in place since 2014 and it was expected to take time for people to switch.
“The national data opt out gives patients a more direct choice about how their information can be used and enables them to review that choice and change it whenever they choose, without placing an unacceptable additional burden on GPs.
“As type-2s are fully retired on 11 October, use of the national data opt out service may increase as we continue to make patients aware of how they can make choices about the use of their data.”
NHS patient opt-outs explained
A new national data opt-out was a key recommendation of National Data Guardian Dame Fiona Caldicott’s third report, published in July 2016.
The report was focused on resolving years of controversy over how much patient identifiable NHS data is shared without their explicit consent, particularly for commercial research.
Under the previous consent model set-up in 2014 as part of Care.data, patients could ask their GP to stop sharing their GP records with NHS Digital (known as a type-1 opt-out) or sharing any of their identifiable health records beyond NHS Digital (known as a type-2).
Type-2 opt-outs were registered with a patient’s GP and applied by NHS Digital.
The new opt-out was launched on 25 May this year, replacing the type-2 scheme with a single objection to any sharing of patient identifiable information for purposes beyond direct care.
Unlike the previous scheme, every health and care organisation will be expected to honour these preferences by 2020-21.
The opt-out is currently honoured by NHS Digital and Public Health England.
It is run directly by NHS Digital, rather than GPs, and run mostly online, although off-line options are available.