• Macmillan and Cancer Research UK appeal to Jeremy Hunt over concerns that patient data opt-outs may jeopardise national cancer strategy
  • Annual cancer patient experience survey, used to underpin CCG performance targets and reduce care variations, may be “at risk”
  • DH recognised concerns about “statistical validity” of surveys following Dame Fiona Caldicott’s report

The UK’s two leading cancer charities have written to Jeremy Hunt to raise concerns that changes to patient data opt-outs may put at risk the ability to deliver a cornerstone of the national cancer strategy.

The pair believe the national data guardian’s recommendations, accepted by the government last month, will jeopardise the future of an annual survey of how cancer patients are cared for in the NHS.

NHS England uses the national cancer patient experience survey to “help deliver the national cancer strategy [and is a] key tool in tackling variation in experience of care”. It said the survey is used to “ensure better care for people with cancer”.

Macmillan and Cancer Research UK have told HSJ that they were seeking “assurances from the Department of Health” that the survey will continue to be “used in the future”.

In a joint statement, the charities said: “We have concerns that this important survey could be at risk because of wider changes to NHS data collection and management, as part of the new national data guardian model. We would welcome assurances from the DH that this is not the case and that this important survey can continue to be used in the future.”

The pair continued: “Patient experience is a cornerstone of the cancer strategy. The cancer patient experience survey is vital for giving people with cancer a chance to have their voices and experiences heard. It allows patient experience to be included, for example, in the [clinical commissioning group] improvement and assessment framework, thus placing it on a par with clinical effectiveness”.

The charities are concerned that if the patient opt-out is applied to the national survey, as suggested in Dame Fiona Caldicott’s report, the survey would no longer be representative of the population of those living with cancer.

It is understood that patient opt-outs would prevent the survey being sent to a random sample, introducing an unknown level of bias into the results. The number of patients opting out of sharing their data would also not be uniform across the country, so it is likely to prevent the NHS comparing variation in cancer care across clinical commissioning groups and trusts.

NHS England’s Five Year Forward View delivery strategy, published in March, said key cancer improvements for the next two years will be driven by “performance goals for CCGs and cancer providers, matched by unprecedented transparency using the new cancer dashboard”.

The dashboard, published by Public Health England, presents data on survival, treatment, mortality and patient experience. All seven of the patient experience indicators are provided by the data from the survey.

The government’s response to the Caldicott report, published last month, noted concerns about how the new opt-out proposals would impact on patient surveys.

It said: “We heard about the importance of patient surveys in understanding patient experience and acting as an early warning sign of poor quality and unsafe care. Organisations such as Care Quality Commission and members of the research community raised concerns about the impact of an opt-out on the statistical validity of their surveys.”

It added that the Department of Health will work to assess any potential impact on statistical validity and quality and safety of care.

Dame Fiona, the national data guardian for health and care, was asked to review the government’s position into sharing patient data following the Care.data fiasco. Her subsequent report into data security, consent and opt-outs was published in July 2016.

In its response to the report, the government said it will implement its recommendation for an opt-out option for patients who do not want to share their data beyond direct care. However, it said it “will take the time needed to get it right”.

The DH declined to comment further on the charities’ concerns.

A CQC spokeswoman confirmed the regulator uses the survey data to “inform every individual inspection” where it is relevant, and is likely to incorporate it into a new insight programme that looks to uncover poor quality care.