The Department of Health in England claims to value experts by experience – those people who have lived experience of the NHS and care services, and who want to give their time and energy to make those services better for those who come after them. But DH/E’s actions might cause concern.

Lloyds Bank recently got caught looking at staff bank transactions to use the contents against those staff in pay negotiations. Similarly, when “chaotic and incoherent” Mr Streeting gets emotional, he makes decisions in the interests of his leadership campaign politics not patients (and he wants to become data controller for all of your medical notes).

As part of the takeover of NHS England by the Department of Health in England, items 5.2 and 5.3 in the minutes of the 12th June 2025 Advisory Group on Data meeting show that the new Government is allowing civil servants in DH/E to access patient data for their work. (There are two items because there are two systems; at some point Palantir will replace both).

Under the previous government, this capability was only given to the “Private Office Data Science” (PODS) team, working directly on whatever the Secretary of State wanted. There is no transparency over the access when doing policy work for the Secretary of State yet normal civil service rules on access apply – which is, if the politicians ask for something, then a civil servant should give it to them. Instead of applying to policy drafts and consultation responses, the principle gets applied to your medical history and all your doctors’ notes. 

As Labour has made data skills something for all civil servants, all DH civil servants now have data access if they can justify it for any part of their public task – their ‘day job’ – no matter how tangential.  The Department of Health in England does not disclose what it wants these powers for, which suggests they will be used for whatever Ministers of the day want – the same decision Lloyds Bank made. DHSC will have the same capacity –  someone says using your medical history as they want is in line with the Civil Service Code then it will happen. For example, civil servants who staff the new “Patient Experience” directorate at DH/E, whose job over time will become hiding the patient experience from others.

If an ‘Expert By Experience’ discloses to a civil servant (or anyone working for what is currently NHS England) something about their experience, i.e. the topic of expertise, the civil servant will be able to use that “unique” experience you told them about to look at your entire medical history and read about anything you didn’t disclose. 

This access applies to everyone, not just those cooperating with the Department of Health in England. Lobbyists, MPs (especially rebels), public figures, are all equally at risk, whether or not they directly talk to the new “Patient Experience” directorate. This is in addition to the reidentification risk which remains trivial for anyone with a public health event that is uniquely identified in the health events data of the NHS (e.g. a man of a known young age having a kidney removed in a particular week in a particular hospital).

The 10 Year Plan says this:

The NHS never has the right to keep the public in the dark. That it so often does so reflects the centralisation of power and disregard for patient voice we identified in chapter 5.

At its worst, this status quo means the most severe cases of systematic harm go unnoticed and unchallenged for years. The past 4 decades have seen a litany of tragedies. Each of them was avoidable. Each suggests previous lessons have gone unlearned.

That is why we will make the choice to deliver full transparency. We recognise this will be uncomfortable for some in the NHS. We expect transparency to highlight new failings, show new problems with quality of care, and to put a megaphone to the mouths of complainants that have otherwise felt they are shouting into a void. We do this because sunlight is the best disinfectant – there is no other way to restore public faith, and to drive up quality for all.

These are nice words, but they are currently disconnected from both policy and from delivery. Maybe, like GP improvements, they’ll come sometime after 2035.

The NHS is watching Wes speed run the dictator’s dilemma (powered by Palantir). Putting everyone’s medical notes into Palantir for any civil servant to rifle through if they believe it is in line with the civil service code will fall far short of what is required for public trust. Trust requires evidence; by definition, “faith” exists in the absence of it, but when “chaotic and incoherent” Mr Streeting gets emotional, he demands staff do what he wants, and gets very angry when GPs and other doctors all care about their patients going beyond the political headline.

Data always gets shared

Item 9 of the same 12 june minutes also allows any new data held by DH/E to be given out to anyone who had any data for that purpose before. As things stand today, those additional accesses will not be included in the NHS England Data Uses Register, so there’ll be no transparency on whom that data is given to.

Item 5.1 of those same minutes show AGD taking a look at the Michelle Mone style antics of HDR abusing “Covid only” data rules; HDR may have taken a similar approach to the truthiness of its public statements. Of the projects that HDR asked AGD for a view on, the majority did not get support from AGD, showing just how rogue the HDR process has gone: HDR and Biobank share a culture and this may be the precedent for the new “Health Data Research Service” envisaged by the HDR “leader” who argues tearing up the “pandemic only” promise is entirely fine because they’ll gain from the change. 

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