Patient experience surveys exempted from national data opt-outs

Users of the national data opt-out service will need to separately opt out of national patient surveys, it has been announced.

Speaking on Twitter, health minister Steve Brine argued that “learning from the experiences of patients is crucial to shape services”.

It was for that reason, he said, that the national data opt-out – a means by which people can prevent their confidential patient data from being used for research and planning purposes – would not automatically apply to national patient surveys.

That includes, notably, the National Cancer Patient Experience Survey.

Improving cancer care is a priority in our #NHSLongTermPlan & learning from the experiences of patients is crucial to shape services. The national data opt-out will not apply to nat patient experience surveys including #CPES but normal survey opt-out arrangements still apply.

— Steve Brine MP (@BrineMinister) January 10, 2019

The national data opt-out programme was launched in May last year with a view to allowing people to choose how their confidential health data is used.

It replaces the previous ‘type 2’ opt-out, which allowed patients to tell NHS Digital they did not want their data shared for purposes other than their direct care.

But what was covered by the opt-out caused concern among some bodies.

In August 2017 Cancer Research UK and Macmillan Cancer Support wrote to then-health secretary Jeremy Hunt arguing that applying the opt-out system to cancer experience surveys would jeopardise improvement in care.

Responding to the decision, Matt Case, from Cancer Research UK, said: “This is absolutely the right decision to ensure we to continue to improve the NHS.

“Every year the Cancer Patient Experience Survey gathers the views of tens of thousands of people with cancer.

“It provides a rich insight into their experience from diagnosis to treatment and clear evidence of how to improve cancer services.”

Dr Fran Woodard, executive director of policy and impact at Macmillan Cancer Support, said it was a “really positive decision”.

“Given that the information is a leading source of evidence for the patient experience, access to the data plays a vital role in monitoring quality and improving patient care,” she added.

“It is important that we keep up the national conversation around how bodies like the NHS use personal data volunteered by the public to better understand and advance care, which is essential for driving improvement.”

The opt-out programme currently only covers data held by NHS Digital. But all organisations that use health and care information will be required to respect any national opt-outs by March 2020.

The programme was implemented last May, following the introduction of the general data protection regulation (GDPR) and recommendations from the National Data Guardian in light of controversies around the care.data programme.

That project aimed to expand the Hospital Episode Statistics (HES) database – which contains details of all admissions, A&E attendances and outpatient appointments at NHS hospitals in England – by linking it to other data sets, starting with GP data.

However it was quickly met with heavy criticism for confusion over what the data would be used for and how patients could opt out.

The project was eventually dropped in July 2016 following the release of Dame Fiona Caldicott’s report on security and information governance in the NHS.