Ten things you need to know about the Health and Care Bill

Dear Editor

Doing Away With NHS Digital : Why It Matters

For more than a decade NHS England has sought to take-over NHS Digital and it has now succeeded. This is a significant retrograde step in defending the rights of citizens with respect to the collection and use of their health data. And has the potential for undermining the relationship between clinicians and their patients.

Even during the drafting of the Health and Social Care Act 2012, which established both the NHS England as the NHS Commissioning Board and NHS Digital as the Health and Social Care Information Centre (HSCIC), the leadership of NHS England argued vehemently against establishing the HSCIC as a separate body. Whilst failing to achieve that objective the compromise was that NHS England could direct NHS Digital, as HSCIC was rebranded, to collect data and to establish specific information systems.

However the Act also gave NHS Digital discretion not to comply with a direction, it if believed that to do so would be in conflict with its own guidance, notably with respect to the confidentiality and the use of patient data. When I became the first Chair of NHS Digital the leadership of NHS England made it clear that they did not expect NHS Digital to question or review any direction they chose to make. And NHS England were unhappy when the then Board of NHS Digital decided that each NHS England direction should be reviewed, not least in the context of maintaining the citizen’s rights with respect to the use of their data. In doing so the Board of NHS Digital was quite clear that the Act had given it a responsibility to represent and defend the interests of the citizen, balancing those against the needs of the NHS and indeed that wider research industry.

On my resignation as Chair, following a difference of opinion with the then Secretary of State over the publication of statutory statistics, NHS England extended their influence over of NHS Digital through the appointment of one of their own non-executive directors as its Chair, along with the attendance of NHS England’s directors at NHS Digital board meetings. But the ambition to subsume NHS Digital remained and has now been achieved.

This is an important and retrograde step not least in the context of this government’s clear intent to weaken the constraints on the use of patent data, as set out in the consultation document, Data: A New Direction. Doing away with an independent statutory body in NHS Digital, charged with defending patient rights, is itself, unfortunate. But handing that body and its powers to NHS England, is a grave error.
In effect NHS England will be able to decide that its legitimate interest override those of the citizen and the patient, with little or no external constraint or scrutiny. With no requirement for transparency and indeed with additional barriers to citizens asking for information about the use of their data, individuals may never know what NHS England chooses to do with their data. And this matters.

In my experience the general approach of NHS England, including of its clinicians, was that much of the guidance and regulations with respect to the use of patient was seen as unnecessary. The view was that if a patient had chosen to use the NHS they had implicitly agreed that their data could be used for the benefit of the NHS.

NHS England has, however, many and different priorities which can be and often are in conflict with the interests of individual patients or groups of patients. It allocates scarce resources in what it sees as the interests of the wider community against priorities that it establishes, but which may deny individual or groups of patients access to services and treatments they believe they require.

Those resource allocation decisions made by NHS England are increasingly data driven and increasingly at a micro level. With access to ever more extensive data sets, including from beyond the health care system and with the enhanced power of AI, NHS England will have the ability, and given it’s mixed priorities the intent, to bring together a patient’s data from all their interactions with the NHS, including hospital, GP, pharmacy, genetic testing, mental health services and so on, to create a personalised data set for a patient, Such a data set, coupled with increasingly sophisticated and opaque algorithms, can then be used to decide on allowing a particular drug treatment, surgical intervention or access to a new treatment.

There is no requirement for NHS England to tell the patient that their data is being used in this way or to disclose what analytical techniques or algorithms are being applied. And the government’s consultation document goes further, increasing the barriers to transparency, suggesting that citizens should be charged for the privilege of asking about the use of their own data.

But the possible uses of that data are much wider than just health. In line with Government policy, NHS England could be encouraged to share and pool a patient’s data with other public sector bodies to inform a wide range of decisions. In seeking to tackle fraud, to enhance efficiency or to improve a citizen’s consumer experience of public services, health data could inform decisions on benefits, the provision of social care, child protection, drivers licences, immigration, employment, judicial decisions and much more.

There are undoubtedly significant benefits to be gained through the sharing of data, both for individual citizens and more generally for the NHS and for other public services. For those benefits to be realised requires the continued trust and cooperation of patients. All the available research shows that patients are overwhelmingly trusting of the NHS and particularly of its clinicians. It would be a disaster if that trust was undermined by the failure to establish effective safeguards to protect the interests of patients.

NHS Digital was established to provide at least element of protection. If it is to disappear then what is required is to put in place robust, external, independent scrutiny of NHS England. This could be through giving the currently toothless National Data Guardian effective powers of oversight. There should also be a statutory requirement of transparency. This would require NHS England and all NHS bodies to give patients the ability to find out what of their personal data is held by NHS organisations, who has had access to it and for what purpose it has been used.

The demise of NHS Digital will go unnoticed by the vast majority of the population. But its absorption into NHS England is a step in the wrong direction, signalling a policy approach which not only challenging the basic right of patients with respect to their own data but may also, ultimately, prove self-defeating.

Kingsley Manning
Chair
NHS Digital/HSCIC 2013-2016