Confused data policy risks 'almost irreparable' mistrust – NHS data boss

NHS Digital chief executive Sarah Wilkinson told an audience in London on Tuesday the current government rules of NHS patient confidentiality were open to “multiple interpretations”.

She said: “Where multiple interpretations are possible, there is obviously the possibility of different judgements over different cases over different time periods and those will impact trust.”

This lack of clarity increased the chances of “political interest intervening on those judgements,” she said, adding: “There is a danger that judgements are made about the use of health and care data that don’t accord with people’s innate understanding of how the NHS will use their data. And, if we get that wrong, there will be a deep and almost irreparable mistrust.”

Ms Wilkinson said the existing mistrust was already “slowing us down” on sharing data to improve care, with clinicians in particular “anxious about sharing it with the health research systems because they don’t feel they can be completely confident in its uses”.

This also made it difficult to have a much-needed “open and transparent” conversation with the public about using their health data and to confront anxieties stemming from the Care.data scheme and other privacy controversies. 

She said: “It is absolutely critical that we are very clear about the code of confidentiality that applies to health and care data and that code does not speak in raw shapes and patterns but with some specificity, particularly about the modes of data sharing that have caused significant anxiety in the past, such as the sharing of data with insurance companies, under the Care.data programme, and sharing of data across government.”

NHS England is currently reviewing the NHS code of confidentiality.

Ms Wilkinson also said the national opt-out, introduced last year in response to the third Caldicott review and run by her own agency, was not “sophisticated enough” because it only allowed patients a single opt-out from using their data for research.

In the event of a crisis in public trust in NHS handling of data, mass opt-outs could create “systemic errors” in the data the NHS relies on to improve care. 

“We have made it easier for people to opt-out… and that’s good and important… that in itself will build trust,” she said. “But the lack of sophistication in that approach increases the risk of a broad impact from quite narrow concerns.”

Ms Wilkinson was speaking at a King’s Fund and IBM Watson event focused on data analytics and artificial intelligence in health.

NHS Digital is the designated safe haven for NHS patient data and holds vast amounts of information about 65 million NHS patients, some of which is shared with researchers.

The government has identified NHS patient data as a future economic asset to support the life sciences and technology industry, and NHS Digital is increasing both the volume and quality of NHS patient data it shares with industry and researchers.

However, the agency has also been at the centre of several controversies concerning the handling of patient data in recent years. It ran the Care.data scheme that was closed in 2016 amid privacy concerns and, in May 2018, the agency had to suspend an arrangement with the Home Office to share confidential information about patients suspected of being in the country illegally, after concerns about privacy and care access.