- All patients will be give a single option to opt-out of sharing their NHS records for research and planning from May
- Move will coincide with introduction of new data protection laws
- Opt-out part of new system to suceeded Care.data
Every NHS patient in England will be given the option to opt-out of sharing their health records for research or planning from May, coinciding with new European privacy rules.
NHS Digital has confirmed for the first time that the new national opt-out will give patients a single option to prevent sharing their identifiable data beyond their direct care from 25 May. It will cover both research and NHS planning.
The rollout of the national opt-out, first proposed nearly two years ago, has also been pushed back from its original scheduled start in March to May.
It will be introduced alongside a slew of new Europe wide rules, known as the general data protection regulation and networks and information systems directive, requiring tighter stewardship of personal data and harsher penalties for privacy breaches.
The opt-out will not apply to records used to support providing direct care or patient data that has been anonymised. It does not distinguish between NHS or non-NHS organisations.
All organisations handling NHS patient data will be required to honour the national opt-out by March 2020.
The opt-out is also the first step in a wider project to share and link more NHS patient identifiable data nationally, the first since the Care.data scheme was dropped in 2016 amid opposition from GPs and privacy groups.
The new data collection system under development will be based on a network of regional “data hubs”, covering three to five million people, which will eventually link to a national patient data repository, controlled by NHS Digital.
The new opt-out system was first recommended by the national data guardian, Dame Fiona Caldicott, in her last review on data security in 2016 in the wake of Care.data.
Dame Fiona’s review had left the door open to either a single opt-out or two separate options for research and NHS planning. However, she told HSJ in December that a single choice would be preferable.
NHS Digital confirmed, in a newsletter on Wednesday, that health secretary Jeremy Hunt had selected a single opt-out.
Nicola Perrin, who leads the Wellcome Trust’s Understanding Patient Data initiative, said asking the public one simple question was the right choice.
”Offering an opt-out is an important step towards rebuilding public trust and a single question will ensure that the opt-out can be implemented transparently and effectively, reducing complexity for the NHS, researchers, and the public.”
However, Sam Smith from privacy group MedConfidential, said questions still remained about how the opt-out would be applied.
”We welcome the confirmation of the start date that aligns with other changes. Will patients finally see how data about them is used?”
Patients who have opted out of sharing their data beyond the NHS under a previous national scheme, known as “type 2” opt-outs, will be contacted individually by NHS Digital before being automatically shifted to the new system.