National data opt-out programme

Friday 25th May 2018 is a momentous day for data protection with the introduction of GDPR. But with your inbox flooded with updated data privacy statements, you may have missed that NHS Digital is launching its national data opt-out programme on the same day, to give patients more control over their data.

This will offer patients and the public the opportunity to make an informed choice about whether they wish their confidential patient information to be used just for their individual care and treatment or also for research and planning purposes.

The national data opt-out programme is in response to the 2016 Caldicott Review. In the review Dame Fiona Caldicott stated:

“A patient should be able to state their preference once (online or in person), confident in the knowledge that this will be applied across the health and social care system.”

From Friday 25th May 2018 NHS Digital’s tool will apply this opt-out to data in specific circumstances.

The opt-outs only apply to patient confidential data where it is being used for research or planning purposes, where section 251 of the NHS Act 2006 has been used to gain access to the data. The opt-out will be applied from that point forward and will not be applied retrospectively to historical data.

So, for example, the opt-out will, very sensibly, not be applied if the data is being used for an individual’s direct care, which includes case finding. The opt-out will also not be applied if the data has been anonymised in line with the Information Commissioner’s Office anonymisation code of practice.

NHS Digital defines research and planning as follows:

  • Research – finding ways to improve treatments and identify causes of and cures for illnesses.
  • Planning – to improve and enable the efficient and safe provision of health and care services.

Previous opt-outs will still be applied. Patients who have a type 2 opt-out will automatically have their objection migrated over to the national data opt-out. Type 1 opt-outs, held in a patient’s medical record at their GP surgery, will still need to be applied as they are today.

Although NHS Digital will apply these opt-outs from 25th May 2018 all other Health and Social Care organisations will have until March 2020 to apply the national data opt-out.

Patients will be able to opt out either online or by calling NHS Digital. Anybody wishing to opt out should think seriously. The NHS is for all of us, funded by all of us. If my data can help make medical improvements or improve the efficiency of the NHS then I only too happy to help.