This Government believes AI will impact everything, and because it believes AI will impact everything and the Silicon Valley hype, the Government believes in the coming robotics revolution and can slash care worker visas because care worker jobs will “soon” be done by robots (remember to say thank you to chatGPT). (“Soon” in migration policy terms means within the ~14 years that it takes for a change in migration policy announced today to go through policy, legislation, implementation, and then the 10 year pathway for leave to remain). What they’re doing for carers they’d like to do for doctors, which needs a database of those AIs and robots can read and write to, which is a central health record under the control of the Department of Health in England.
They call it the “Single Patient Record, and the Department of Health in England has asked companies for information on what D/E can buy to run the record they’ll force you to have.
Published in advance of the 10 year plan because lead times are so long, the Department of Health in England is asking how suppliers will implement an unpublished plan, but they’re offering 8 pages of ideas that are “non-exhaustive and subject to change” “working vision” “draft definition” “early draft use cases” where “Nothing within this document or the broader market engagement exercise shall constitute a commitment” because “NHS England is at an early stage of scoping the Single Patient Record (SPR). The initial aim of the pre-tender market engagement is to gain innovative ideas from the market to ensure that NHS England considers all options available”.
It appears to be the belief of the Department of Health in England that FDP/Palantir will take any data that they want from the Single Patient Record, using the authority of the Secretary of State to Direct that it be provided. We’ll have more on the consequences of that in time, and other assessments of the impact of Labour’s vision for the future of your interactions with your doctors and of your care.
This (long) piece will look solely at the data and the new database being bought, and there are a lot of moving parts that don’t really join up yet (which is why it doesn’t look like it joins up, because it doesn’t). None of the proposals in this document will happen to your data until 2026 or beyond – if anything causes you immediate concern, you can join our mailing list to hear directly from us if or when there is anything that may need you to take action.
This new database could be done well, it could help and empower patients to get better care, cheaper, whatever that means to them. What those treatments are the end of this Parliament will be different to what they were before the election – Mr Streeting knows that by the end of this Parliament in 2029/2030, it’ll be increasingly normal for you to be able to take your cat to the vet to have your cat’s cancer effectively cured. Precisely which cancers and how much it will cost are currently uncertain, but decades of research are starting to show results for humans too, and politicians know it will be morally, practically, emotionally, but especially politically intolerable for you to be able to have your vet cure cancers in your cat, when you and your loved ones cannot receive equivalent treatment on the NHS.
A “single version of the truth” that works would start from a fundamental rethink that placed patient experience at the centre, because, as Mohammad from PKB puts it: “the patient is the only one in all the different meetings”. Instead, the SPR as envisaged by the Department of Health in England puts a Government Department in every consultation you ever have and every piece of data you ever record.
“In the future”
The annex of the “Full RFI document” with the details is not a coherent vision of “the future” for the NHS, or the future of your health, and it’s certainly not a rational considered assessment of what the NHS would look like if it was started from scratch today. Instead, its a bucket of ideas, with the level of detail you may find on a postit note in an over-caffinated workshop where “initial ideas” are accepted as sacrament without any introspection or insight. It’s as if DH/E typed up every post-it note and asked decided to see what they could buy. It’s unclear who they invited to those meetings to write things that went into the document. Not us, but clearly the HDRUK-Service added their wishlist which reflects the culture of biobank and the everyone database. Whether DH/E will apply the NDOO to prevent “unnecessary processing” of “pseudonymised” personal data is unclear, but today DH/E actively refuse.
Some early hints of possible change for the better
medConfidential welcomes the suggestion for features like:
- “I can change my choices for certain uses of my data held within the SPR for users which do not provide services directly to me, for example the use of my data in research” (but “planning” is missing?)
- “I can view which users (for example, identified by role and organisation) have accessed my care record and the purpose for their access of my record”
With the number of caveats in the document about no commitment to anything, it is far from certain whether those ideas will get implemented to protect patients – NHS England has repeatedly sided with creeps against their victims. Maybe the new Department of Health in England will do better – time will tell, and we’ll keep a close eye on this because “in the future” can always be delayed.
Government choices not your choices
DH/E seem to have decided you must have a politically controlled central health record – there is no evidence you will be offered a choice and suggestions you will not get a choice because “activities are held back by the lack of a single record”. Existing “records are not comprehensive, are read only, and present data from care settings in tandem rather than creating a single version of the truth” and needs “different providers, as well as NHSE, to all have read and write access to a shared, comprehensive record built from multiple provider records”.
That is, after the abolition of NHSE, the Government will be able to write things to the “single version of the truth” about your health, replacing your doctor’s records to avoid a “tandem” record – which may be the end of TPP/EMIS for GPs and DH/E imposing their monopoly – yet it also says “the data in source systems such as GP and Trust EPRs will remain the system of record for clinical activity, providing the single version of the truth”. So there will be at least three different “single” versions of the truth, plus whatever Government algorithms write based on the data you give them (including from your smartwatch if you want to share that with any doctor you have to share it with all of them)
Politicians usually believe they are doing the “right” thing. Mr Streeting argues that the record will belong to the patient, and be under the patient’s control, but when they have ADHD, or have some condition that the politicians of the day treat like a political chewtoy the same way homosexuality was treated in the passage of section 28. A politically controlled central care record is not yours, it is the plaything of the government and of politicians, which may be increasingly understood very differently in 2025 than it was when Mr Streeting was thinking his thoughts over dinners with lobbyists while in opposition. “Don’t say gay” becomes “don’t do anything” (but you might die).
Replacing your doctors with not-your-not-doctors
The theme that flows throughout the wish list is for fewer doctors and more not-doctors – whether AIs, algorithms, not doctors. “Care delivery tomorrow is predicted to be much more digitally enabled, supported by artificial intelligence (AI) and algorithms that identify risk” with items written by “patient clinical algorithms” in “Primary and secondary care operators” (who are different to “clinicians”).
When decisions are made by algorithms and AIs, you wont be able to know why you ended up so far back on a waiting list managed in Palantir. One of Mr Streeting’s first acts in office was to restrict care for people he believed inappropriate to receive it. Simultaneously, NHS England wants to reduce the ADHD drugs bill, and others believe PreP encourages immorality, and those contentious debates are before we get to the routine questionnaires on alcohol, smoking, or other activities that can impact health but are subject to political ideologies. When you’re answering questions from the Government rather than your doctor, the answers may have greater effect.
Government is trialling giving weightloss drugs to people on Universal Credit “to prevent them holding back our economy”. The Single Patient Record existing is a prerequisite for giving DWP access to it, and this may be why you can’t choose not to have one. No patient should be forced to choose between their health and their privacy, but it may become the view of Ministers they should have neither.
“Single version of the truth”
The proposal expects tech suppliers to create a “single version of truth”. While that is a clear political aim, and a thing that could be put on a reform leaflet, the issue is not technical nor data. It is not a lack of data that leaves people stuck in hospital due to a lack of social care capacity, it is not a lack of data that leads to the NHS assessing needs at one level and social care funder only being able to afford/provide something lower. It is not a lack of data that leads to a particular diagnosis and referral by their GP being bounced around while hospitals fiddle their waiting list figures.
To be useful, a “single version of truth” needs there to be a version of the truth that is consistent.
It can be done, but the systems must serve the patients and the staff, not attempt (and fail) to impose decisions against other incentives.
Mr Streeting claims that the record will be “owned by the patient” and DH/E leadership describes it as belonging to the patient – “theirs not ours”. It’s unclear how that squares with being forced to have one. Either way, will a patient be able to change any entry within “their” database? Will they be able to block access to their smoking, drinking, sexual activity, IVF history? Or that embarrassing condition that still afflicts them? When the algorithms think you’re obese, do some people get to fiddle the figures so the AIs stop hassling you about it? Or will they require you to send a selfie every time so they can guess it themselves? In short, will “your” record be a record about you not for you? There are legitimate reasons to remove entries that are fundamentally wrong, but there are also sometimes reasons not to. That is a very human decision, and reasonable people can disagree. Can a patient write their own diagnosis to the database when very drunk and alone at 4am in the morning? Will the system suggest they just go to sleep instead?
Your doctors may benefit from more information, but the plan is for “artificial intelligence (AI) and algorithms that identify risk and can personalise care and promote preventative activities based on an individual’s history”. As with FDP, such “AI and algorithms” will be imposed nationally. Today systems “present data from care settings in tandem rather than creating a single version of the truth” and instead “In the future: the SPR will provide a single version of the truth by integrating data across settings, enabling patients and health care professionals to work from the same record and to both see key primary and secondary care NHS interactions, as well as autonomously prompt actions to occur.” Simultaneously, while the large corporate GP chains and hospitals have limited liability when such algorithms go wrong, your local family doctor continues to have unlimited personal liability (and the only way they can get the protections the chains have is to walk away from their practice and patients entirely).
There are the usual vague promises of reducing patient harm that also get made (but not delivered) for FDP. Ensuring contraception for any woman receiving sodium valproate was supposed to be done by FDP, but hasn’t; there are ways to do it, but legitimate use cases mask the much larger desire to replace doctors with algorithms that shift the burden onto patients who must answer questions over and over, just in case something might have changed. How many times is it appropriate to ask about contraception? Given the risks, one more will always be better…
There can’t be a single version of the truth in a computer when there isn’t one in the world
None of the compromises are discussed in the document – everything is perfect, no tradeoffs are required, because it’s clear that the most important opinion is political not clinical.
Discrepancies between primary and secondary care aren’t because they don’t like each other, but fundamentally different assessments of need. Part of this problem manifests in “Advice and Guidance” dance that DH/E are doing between GP and hospitals.
Ambulances don’t queue outside hospitals because social care can’t see NHS records, they get backed up because what social care can do doesn’t line up with what NHS needs it to do. Data is a more politically palatable and tractable excuse than insufficient funding. DWP doesn’t force people through the brutal PIP process because the NHS wont tell it what’s in the medical records (they write plenty of letters saying what’s in them), it’s because DWP loses arguments with Treasury about how much it will cost, so has to bully people away from claiming instead. Will one “good” day of movement from your smartwatch mean your PIP is taken away for the entire month, carer’s allowance style?
Research and not-research
A lot of the SPR call seems to be based on post-it notes scrawled by researchers to give more data to researchers. Whether the new Department of Health in England will apply the National Data Opt Out to such unnecessary processing of personal data remains unclear, but today NHSE’s “privacy, transparency and trust” team would refuse. They would sell your data anyway, and the Prime Minister has announced a new £600m organisation to sell the data.
One fiction of researchers is “safe return”, where a PhD student with an excess of testosterone and caffeine thinks they should be able to use a mutant algorithm to change your prescription or treatment without any involvement of your doctors.
As envisaged for data flows for care, the SPR equally allows a fundamental rethink of research infrastructures, and reduce the multiple layers of institutions between data and researcher (data controller, HDRUK-S after their rebrand from HDRUK, funder, researcher). In practice every disease should have the same quality of data and infrastructure of the cancer researchers.
But that’s not in the 10 year plan and not in the data system to implement it (because of course the call for the system goes out first).
Potential Suppliers
Much of this functionality is already entirely present around the NHS in various levels, and that can be made national from existing UK suppliers if what Mr Streeting wants is delivery rather than contracts for cronies.
If the Department of Health in England had wanted to, this functionality could have been rolled into the FDP contract (and we had believed it would be rolled in), so the contract is currently Palantir’s to lose. Oracle’s UK government lobbying subsidiary (aka the Tony Blair Institute) believes that Oracle should get the contract (which, no matter your views on Palantir, Oracle is worse on almost every metric) backed by the Our Future Health ‘visionary’ who’s flush with Oracle-sourced cash and who happens to agree with the HDRUK-Service and UKBiobank that they should be able to get a copy of everything in your patient record (so they can sell it to well known eugencists as they wish). Both Oracle and Palantir will pour money into lobbying, watermelon cocktails and all, without much attention to the patients whose data will go into their systems. Like HDRUK and Biobank, each will use patient groups to claim that what they supply is just wonderful based on partial disclosure.
The tech bro culture of the Blair Institute and Mr Streeting underpinning the system is simple: the American machine is right and even when the machine is fiction. The latter belief makes the former possible. If you feed all of the internet into a transformer what you get is chatGPT; if you feed chatGPT of DH/E’s paranoias and reality-denying-insistent press releases then what you get is this case for another new database.
Some additional questions for suppliers (and their competitors)
DH/E has written what they’d like to see from suppliers, here are our additions:
- Do your existing products show patients how data about them is accessed and used? Give public URLs to your documentation about those features and how/which patients can use that today.
- On a complete organisational chart from your lowest paid contractors to all your ultimate shareholders, which parts are based overseas with the practical ability to make decisions about what the UK entity does? (including your shareholders firing all current UK staff (DOGE style) and replacing them with pliant AIs/others)
- Suppliers will have to show how their product has been used elsewhere, and some have said they want to monopolise markets. If your product had been used throughout the Gaza Health Ministry on October 6th 2023, what would your company have done on/after October 8th? What is your corporate position for refugees from a war being treated through your systems? How should the NHS explain that to patients?
- What is your policy on catastrophes and coverups like this case?
- The new Department of Health in England adds a ‘use case’ of wanting the Home Office to search for the menstrual cycles and sexual satisfaction/function scores of all women in the database (this is something the HO has asked for in the past, and which was only vetoed by the soon-to-be-abolished NHSE). What do you do? What will a patient be able to see?
- From your NHS experience, what’s your take on the “single version of truth” existing in multiple places with different providers? What should happen in theory? And in practice?
- What is your core engine for analysis or storage? Are there open source tools to translate your most complex features to run on open source equivalents? (provide links). Where are interop standards lacking?
- What process and policy safeguards do you desire/expect that should be in the primary legislation that will make this necessary? (imagine this is provided by your most visceral competitor)
In the spirit of promoting public confidence in any new system, we would also expect suppliers to have (public) answers to questions below and the reasoning behind the questions as this has evolved.
Some initial questions for DH/E (which suppliers may want to think about)
- Will SPR be voluntary or mandatory? and how is any choice for patients expressed?
- Who will “own” the record? Can a patient remove information? In what sense is that “ownership”?
- Does DH/E agree with the E Board member who said these “endless” risks “in all probability will never happen” and DH/E should just do this to patients?
- How will SPR be explained?
- What are the caveats on those explanations?
- How is unnecessary processing avoided?
- Where is the informed choice about prevention vs direct care?
- What protections will be given to high profile individuals (e.g. politicians) that are not available to the domestic victim of a person with access to their SPRs?
- Will the National Data Opt Out be strengthened to reflect the strengths of the new system?
- If a patient makes their data available to their doctor, do they have to have everything made available for secondary uses? What happens when SPR data remains completely identifiable? (e.g. how many women ran a marathon in 2h24m in a particular month?)
- How will DH/E avoid the capacity to be able to run secret algorithms across the SPR for any purposes it chooses?
- What protections will there be in law for data being shared with other areas of Government for the delivery of their public task?
- What would Prime Minister Farage/Corbyn do with the power you’re acquiring?
- Does Mr Streeting believe the choice “your data or your life” is a feasible demand for his Government/Department/NHS to make of the most vulnerable patients?
This new database could be done well, it could help and empower patients to get better care, cheaper, whatever that means to them. Questions are not about the potential upsides which could be realised while fully mitigating the downsides, it’s entirely about what the Government will choose to do and choose not to do.
There is a long history of the Department of Health in England choosing what is best for itself today and worse for patients and worse for itself tomorrow.
We’ll be here.
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