NHS surveys exempted from 1.6m patients' data sharing opt-outs

Health minister Steve Brine confirmed on Thursday that patients’ requests for their information not to be shared except for direct care, through what is called the national data opt-out, would not be honoured in the surveys.

This would include the GPs, secondary care, outpatient and cancer patient experience surveys.

Instead, patients would have a separate opt-out option for each survey.

The decision is a victory for cancer charities and some central NHS officials who have argued applying the opt-out to the surveys would undermine their statistical validity and make them next to useless.

The single national opt-out was introduced in May last year, with the ambition to allow patients to register their preference for sharing data once and have this honoured across the NHS.

It was created on the recommendation of the national data guardian, Dame Fiona Caldicott, who was asked to review patient consent and data security in the NHS in the wake of the controversial, and now defunct, Care.data patient data sharing scheme.

However, exactly what was covered by the opt-out has been a point of contention.

In August 2017, in the lead-up to the opt-out being introduced, Cancer Research UK and Macmillan Cancer Support wrote to the then-health secretary Jeremy Hunt, arguing the opt-out to the cancer experience survey would jeopardise the national cancer strategy and improvement in care.

Sources have told HSJ similar concerns were raised with NHS England about the GP experience survey.

In December 2017, Dame Fiona warned excluding too many data collections from the national opt-out could undermine public trust and risk a repeat on the Care.data fiasco.

Responding to the decision last week, a National Data Guardian spokeswoman said Dame Fiona accepted these exclusions as necessary, given the impact applying the 1.6m opt-outs would have on the surveys.

“Dame Fiona acknowledges the public interest in allowing individuals to be given the choice of taking part in these important NHS surveys while ensuring that it is clear to all patients when health and care information about them will be used and in what circumstances they can opt out,” the spokeswoman added.

Matt Case, from Cancer Research UK, said it was great news that the NHS would not lose “this valuable resource”.

“Every year the Cancer Patient Experience Survey gathers the views of tens of thousands of people with cancer,” he said. “It provides a rich insight into their experience from diagnosis to treatment and clear evidence of how to improve cancer services.”

Macmillan Cancer Support executive director for policy and impact Fran Woodard said: “This is a really positive decision by ministers, which demonstrates that the government recognises the importance of the Cancer Patient Experience Survey and maintaining its integrity.”

King’s Fund researcher Harry Evans said: “The exemption from the national data opt-out allows the surveys to continue providing vital intelligence on the quality of care the NHS provides to patients. The government should seek to strike a balance between responding to legitimate public concern about privacy and enabling data to be used by the NHS to improve care.”