The former chair of NHS Digital has written a scathing letter to the British Medical Journal (BMJ), arguing that the government folding NHS Digital into NHS England seriously puts the rights and privacy of citizens and their health data at risk.
Kingsley Manning (chair of NHS Digital between 2013 and 2016) writes that the move has long been an ambition of NHS England and that the move is a “grave error”.
When the announcement about the shake up was made by Health Secretary Sajid Javid at the end of last year, concerns were also raised by privacy campaigners about placing more powers at the center of the NHS. medConfidential, for example, said that NHS England shows “akin to contempt for privacy and research”.
The government, however, argued that bringing digital transformation ‘into the heart of the NHS’ would help the health service recover from the COVID-19 pandemic.
The NHS doesn’t have a strong record when it comes to data projects, repeatedly failing to communicate projects with the public and give citizens control over their health data. The GP data grab and the failed care.data projects were particularly low points in recent memory.
In their letter to BMJ, Manning says that taking over NHS Digital has long been an ambition for NHS England. They said:
For more than a decade NHS England has sort 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.
Manning adds that the Health and Social Care Act 2012 gave NHS Digital discretion not to comply with directions from NHS England, if it believed that doing so would 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.
Why this matters
To most citizens this will likely seem like political wrangling and simply like an organizational change in the health service. But Manning is clear that the power of where decisions around data use lie is critically important, as NHS England continues to advance its use of technology.
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.
The letter goes on to say that in Manning’s 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 data was seen as “unnecessary”. NHS England’s view, according to Manning, 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.
Manning explains why this is problematic, adding:
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.
Manning argues that the possible uses of NHS data are much wider than just health. NHS England could, for instance, be encouraged to share and pool a patient’s data with other public sector bodies to take any number of decisions, including tackling fraud, enhancing efficiency, or to improve a citizen’s 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.
Trust must be maintained
Manning concedes that there are significant benefits to be gained through sharing data, but that these benefits require 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 an 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.