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The NHS will launch a national data opt-out tool on 25 May, allowing patients to easily opt out of having their information shared.
The tool comes as a response to national data guardian for health and care Fiona Caldicott’s recommendation of an eight-point consent model that would allow patients to make an informed decision on whether or not they want their data to be shared.
The online tool, which will launch on the same day as the EU General Data Protection Regulation (GDPR) comes into force, will let patients decide if they want to give the NHS access for just their individual care, or allow their data to be shared for research and planning purposes.
The aim is to make it easier for patients to get information on what it means to not share their data and to improve trust and confidence in the health and social care system.
The NHS has struggled with gaining the public’s trust when it comes to data, following the Care.data scandal, where the programme was being pushed through without explaining the implications for highly sensitive patient records, eventually leading to it being scrapped.
Once a patient decides to opt out, all health and care organisations have to comply with the choices made by the patient until 2020.
There are currently two types of opt-out in place. The existing Type 2 opt-out, where patients have registered with their GP to prevent their confidential data from being shared, will be converted to the new national data opt-out. NHS Digital will write to those patients to inform them of this.
The existing Type 1 opt-out, where patients have asked for their data to never leave the GP practice, apart from being used for their individual care, will still be respected until 2020. The national data opt-out will exist alongside this.
An information pack on the tool said the opt-out would not apply when data is to be provided for the National Cancer Registration Service, or for the National Congenital Anomalies & Rare Diseases Register, as those have separate opt-out mechanisms.
“While the national data opt-out is only available for England, anyone who receives care or treatment in England and has been given an NHS number will be able to register a national data opt-out, though not all channels will be open to them,” the information pack said.
“Where any other form of opt-out is already held for a patient, for example to support a local data sharing initiative, the national data opt-out must still be considered and applied for any uses beyond individual care in accordance with the national data opt-out policies.”
Patients who aren’t able to, or don’t want to, use the online system are able to opt-out via the phone, or request a form which they can print and post.
Read more about NHS data sharing
- Sharing healthcare data could deliver better care for patients, but people must be allowed to assess the benefits and risks themselves, says Fiona Caldicott.
- NHS and social care organisations are still unsure of when to share information because of a “confusing” regulatory framework, and the National Audit Office is unimpressed with the progress on health and social care integration.
- UK data protection watchdog has found an NHS data sharing deal with Google DeepMind failed to comply with data protection law.