Category Archives: News

Shared Care Records

One thing the NHS bureaucracy likes more than anything is having the same acronym to mean two different but similar things. In addition to Summary Care Records (SCR, SuCR?), which have existed since 2007, NHSEx now adds ‘Shared Care Records’ from 2021.

As explained to the Public Accounts Committee on 17 September 2020 by Matthew Gould, CEO of NHSX, Shared Care Records (SCR, ShCR?) should:

“…allow patient data to flow safely and appropriately between different care providers, not just in health but also in social care.”  – Question 46

It is not that NHS England / NHSx have access to data today that is necessarily the problem; it is what they will do with it tomorrow – and whether they will keep their promises (cf. Test & Trace DPIA, transparency court case, ‘contracts for cronies’, etc. , etc.) 

What is needed for Shared Care Records to work?

Patients’ and service users’ data flowing along their care pathway for the purpose of their direct care is a worthy and worthwhile goal, and one that medConfidential has supported since its inception.

If Shared Care Records are to be successful in practice, and not repeat the dead-ends of LHCRs, that success requires they must do an number of things:

1)  The Shared Care Record is claimed to be for direct care only, and a good Shared Care Record will indeed be for direct care. A bad Shared Care Record will be used for lots of other things that it does not tell you about. NHS direct care services are too often seen as a ‘Christmas tree’ off which to hang things; ShCR cannot be a means by which sensitive health records leak out of the NHS via a back door.

  • What happens across the boundaries between administrative areas (ICS, ShCR, or other)? Do ShCRs facilitate care for those who live in one area but, e.g. visit A&E in another?
  • Do (creepy single) doctors get to look up the records of women they’ve met on dates – or anyone in the country – without disclosure or recourse? Are meaningful measures in place for those who are affected to know that their records were accessed?

2)  Shared Care Records’ existence and purpose(s) must be properly communicated to the public, before they are used, (unlike LHCRs) which means:

  • Clearly and publicly stating what they will and won’t do, and explaining the rights and choices people have;
  • Writing to all those who will have ShCRs created – including service users – not forgetting or otherwise disadvantaging families with children, and not just to those who may have previously opted out of LHCR sharing and/or SuCR.

3)  Ensure Shared Care Records can be seen as trustworthy, on an ongoing basis. From the point they are introduced, a record of every access of a ShCR must be made available to the patient or service user via their new NHS Login, cf. Data Usage Reports.

  • If a provider is capable of connecting to a person’s Shared Care Record, it must also be capable of recognising and respecting that person’s confidentiality and consent choices; if it cannot do both, it must not be permitted to do either. 
  • There is no excuse to ‘retrofit’ later; GDPR requires that all data processing is lawful, fair and transparent – and the data flowing through Shared Care records is, by definition, identifiable individual-level special category personal data.
  • Confidentiality and consent choices should be managed centrally, ensuring that system-wide rules and IG are applied consistently and effectively. If local areas / ICSs manage their own dissent processes and someone moves to another area, will they have to dissent again? How will anyone know?

4)  To the extent that any data contained within Shared Care Records is extracted, copied or otherwise processed (e.g. ‘anonymised’) for any secondary uses, this must be done either within the statutory Safe Haven (i.e. NHS Digital) or under its Information Governance processes, which confer (joint) data controllership. Anything less than this would be a retrograde step and, as the failings of consent and governance processes around individual LHCRs have demonstrated, will compromise public trust.

  • Notably for social care data, the regulator (i.e. CQC) cannot also be the Safe Haven: the incentives would be completely perverse. We understand a reluctance to put a body named ‘NHS Digital’ in charge of (adult) social care data, and share concerns about the ‘medicalisation’ of social care. That challenge is, however, an improvement DHSC and the NHS have to learn if health and social care are ever to be properly integrated.

If Shared Care Records cannot meet these conditions then they will be unfit for purpose, and will have been commissioned badly at huge cost to the taxpayer and to the reputation of the NHS.

LHCRs largely failed; will the lessons be learned?

From NHS Data Day, October 2019

Commercial re-use of data

If there are to be secondary uses of data within the Shared Care Record, then plainly the National Data Opt-out must be made statutory, it must work properly for everyone (including families), and must be made readily available to all before any secondary uses go live.

  • The deadline for system-wide implementation of NDOP has been extended repeatedly from the original compliance deadline of 31 March 2020, to 31 September 2021;
  • Meanwhile, LHCRs and CCGs have struggled to interpret and in some cases properly apply correct and appropriate Information Governance for NDOP – a situation that cannot be permitted to continue beyond the pandemic.

Even if there were to be zero secondary uses of data flowing through the Shared Care Record (ShCR), there would still be the issue of Summary Care Record (SuCR) opt-outs. For if someone has objected to just a summary of their record being shared, how can it be assumed that they will accept the wider sharing of their ‘whole’ care record?

Where there is legislation, therefore, both the National Data Opt-out (NDOP) and a ShCR opt-out must be made statutory; and these must be made readily available to all, and must be respected by all across the whole health and social care system.

“Selling the benefits” is no longer enough if you are also selling the records.

Details documents

As all of the future emerges, the graphics below from various NHS presentations show the thinking that went into them, and the direction of travel:

‘Shared Care Records’ for secondary use?

Data for direct care doesn’t stay for direct care. A series of slides over years show the embedded view of NHS bodies which all want data to flow beyond direct care to commercial companies, and for planning, policy and commissioning decisions.

  • It all begins with a lifelong (“longitudinal”) record and “maximising the use of data”:

from: https://digital.nhs.uk/blog/transformation-blog/2019/so-what-is-a-local-health-and-care-record-anyway

  • For the purposes of policy-making, planning, commissioning and near ‘real-time’ surveillance of individual-level patient data, explicitly intended long before COVID:

From: https://hscic.kahootz.com/connect.ti/PubNHSDDTSF/view?objectId=10508916 

  • Of course, there is also research and commercial exploitation; discussed well before COVID

From NHS Data Day, October 2019

  • …and during the pandemic as well; here’s the Minister discussing legislation to align with Big Pharma interests:

From Baroness Blackwood’s roundtables with Pharma, June-July 2020

ALL of these interests (and many more, e.g. Big Tech, Big DNA…) will seek the data once it has been created.

Details documents

Analysis and Inputs Reporting

[The 2020 update to our ongoing series on data usage reports (20142019)]

The need for and consequences of data usage reporting is something medConfidential has worked through for a long time.

You have the right to know how data about you is used, but what does that look like in practice? We’ve mocked up a data usage report for the NHS, and the equivalent for Government – but what about the analyses that are run on any data? What should responsible data analysts be able to say (and prove) about the analyses they have run?


The new, eighth Caldicott Principle is “Inform patients and service users about how their confidential information is used”. In future work we will look at how this goes beyond existing legal requirements under the 2018 Data Protection Act, what Data Usage Reports (or Data Release Statements) should look like to the NHS in 2021, and what patients should see. For now, though, we want to take a look at the other end of the process.

Analyses, Analysts, and their readers

Public bodies (and indeed everyone) buying AI and Machine Learning products need to know what it is they are buying, and how it has been developed and tested. Ethically, they must be able to know the equivalent of “This was not tested on animals”, i.e. “No data subject was harmed in the making of this AI”.

We covered a lot of the procurement side of this in our recent work on AI, data and business models. But that raised a question: what is it that procurers should ask for when procuring data-driven products and services? And what does good look like – or, at a bare minimum, what does adequate look like?

At the most practical level, what should someone wanting to follow best practice actually do?

And just as importantly, who should do what?

In a world of the Five Safes, Trusted Research Environments (TREs) and openSAFELY, and as the role of independent third parties becomes increasingly viable, those who wish to follow more dangerous ‘legacy practices’ with data will be unable to provide and evidence equivalent assurances – and their offerings will therefore be at a significant disadvantage in the market.  

A trustworthy TRE records exactly what data was used in each analysis, and can report that back to its users and to those who read their analyses. Academic journals often require copies of data to be published alongside an academic paper, which is not possible for health data (and if someone were to make that mistake would be catastrophic), but this certificate could act as a sufficient proxy for confidence and reproducibility.

If you are running the data ‘in your own basement’, there’s no way for anyone to know what you did with it beyond simply trusting you. In health analyses and with health and care data, that isn’t enough – and it should certainly not be the basis for procurement decisions.

So, as before, we decided to mock something up.

Trusted Research Environments which facilitate transparent data assurance like this, and which automate the provision of evidence of compliance with the rules – Data Protection, Information Governance, Equality, or otherwise – will be offering advantages for their users over those which do not. And any TRE that does not report back to its users how its safety measures were used will clearly not be helping its users build confidence in the entire research process.

While they may claim to be “trusted”, organisations that fail to provide every project with an ‘Analysis and Input report’ cannot be seen as genuinely trustworthy.

The National Data Strategy for Health and Care (and the other one for everything else)

Across Government data and digital is too often used solely to help civil servants to make decisions, rather than benefitting all stakeholders.

There is little sign this inequity will be addressed under current structures or priorities, but as Government thinking evolves around the structure of the new Information Commissioner, CDEI should also be fundamentally restructured so as to receive and consolidate a much wider range of inputs – including lay members (DHSC’s former National Information Board had six, for example). Without wide-ranging input, data in Government shall continue to make rookie mistakes such as those of the ONS / GDS Data Standards Authority.

There are alternatives to creating many ‘pools’ of data around Whitehall and simply hoping no-one makes a mistake. Built for the pandemic, and with appropriate governance within and beyond it, the model of openSAFELY could apply across the rest of Government – especially for monumental failures like the National Pupil Database at DfE.

While it is self-evident that the vision of the forthcoming National Health Data Strategy should be to maximise the health of patients within the NHS, the vision of a National Care Data Strategy is less clear. Is it only to maximise the health and health outcomes of those to whom care is provided, or do quality of care and quality of life have other dimensions? Whatever is decided, as the Health and Care systems move towards integration, those two goals must align – but it shows how far apart things are that to talk of (the state of) Health and Care data as if they are even remotely equivalent is quite clearly nonsense.

As the pandemic has brutally illustrated, there is no data strategy for social care – and no evident plan to move towards one. Given every journey must begin with a single step, something like this might work.

Health and Care ‘moving parts’

Whenever NHS legislation is next put to Parliament, the National Data Opt-out should be placed on a statutory footing. Aside from guaranteeing patient choice and underpinning trust, this will provide proper democratic scrutiny of official choices such as the one which the National Data Guardian highlighted in her recent annual report – page 11, right column – where NHS Digital, NHSX, and DHSC decided it wasn’t in their interests for patients to see how data about them is used. Should government attempt to defend that position, when the push-poll and focus group used to come up with it are more widely known, the u-turn will be more embarrassing than fixing it now. 

In a similar vein, transparency on access to patients’ details via APIs (whether new ones for COVID-19 or pre-existing ones, such as for the Summary Care Record) would also begin to address the ‘creepy single doctors’ problem that has been exacerbated by the widening of access in a time of reduced oversight. And that some in Government still wish to use patient records for funding and “decommissioning” decisions (para 2) is unlikely to be wise.

Government argues that new business models are the way the NHS and the Life Sciences Industrial Strategy will get them out of the hole they’ve created. Trillion-dollar tech fantasies abound. But while the conflicts of interest amongst advocates of this strategy are clear, whether it will work is not. 

National Data Strategy (outside of health)

The NDS is a “pro-growth” data strategy, which is an entirely appropriate mission for DCMS – but it creates a fundamental conflict of interest in its sponsorship of the ICO as regulator, and its role in choosing the replacement for the current Information Commissioner. For this if not other reasons as well, the ICO should move back to being Departmentally sponsored by the Ministry of Justice, to underline the fundamental importance of following the law and to ensure the principles of justice apply to all data use, as well as to quasi-judicial decision making by the regulator.

A data strategy for the UK should first and foremost respect the rights and freedoms of every data subject, and aim to provide the greatest net-benefit to the whole of the UK – yet there is no compelling vision in the strategy; no clarion call. There is also no testable hypothesis in the strategy, by which its success (or otherwise) can be known. It is likely no single vision acceptable to all stakeholders could have got through write-round – not least because the unreformed, institutionally-ignorant Home Office will not accept a nuance that is in the public’s interest (for example, PHE / Test&Trace / police data sharing).

As written, there is no explicit difference in the National Data Strategy between personal data and data about objects. Lacking specificity, much of the strategy that is intended for one could be used for the other, thereby creating effects entirely unintended by the authors. A recent misstep by the new “Data Standards Authority” illustrates the sort of harm that can be caused when ‘generic intent’ overrides substantive nuance.

After a summer tainted by “mutant algorithms” in education, nothing would say understanding data less than NHS England agreeing to run the COVID-19 vaccination database off a 66 million row Excel spreadsheet. (While a single worksheet can have a million rows, losing 65 million people should be relatively noticeable – plus they know to look… now.)

Enclosures:

Towards making the pandemic response data changes safe for the longer term

HSJ reports a belief within Government that some current data practices, changed dramatically with emergency powers to meet the needs of the urgent pandemic response, should now become ‘the new normal’. While some of these changes might indeed be welcome, and some probably should remain, others need to end – and others must be significantly amended if they are to become anything like ‘normal’. 

It is not news that some status quo practices in the NHS around digital records were not entirely safe; this was for many reasons, not least the motivations and incentives of a range of actors – from multinational corporations to creepy single doctors – who want access to people’s direct care records for reasons beyond direct care.

A net assessment should be conducted of the goals and proposed ‘end state’ around health and care data (medConfidential will do one too) to provide a comparison with our net assessment from before COVID-19.

Digital and Direct Care

DHSC and the NHS did what they could in the circumstances, but access to digital services for those who are digitally disengaged continues to be a problem across Government – especially where community access points such as libraries are closed, either temporarily or permanently. A Whole of Government approach should be taken (possibly in the spending review) to assess and improve the piecemeal work done by Departments.

Mobile phone networks providing free data access to NHS.UK was a milestone in access to digital services, but many digital approaches across the NHS are not via zero-rated services: probably the starkest example of this is video consultations, which are a postcode lottery of apps and charging models – while the much-vaunted NHS app* still lacks video consultations for those situations where it helps both GPs and NHS 111. (*: No, not the (contact tracing) app. Rather, the good one that NHS Digital built as a core service; the NHS app which acts as a ‘front end’ to NHS.UK)

As COVID-19 de-escalates, and as NHS Test and Trace capacity therefore becomes available, the newly-NHS parts of PHE should address the mess – including the ongoing postcode lottery – of digital services that facilitate STD testing. NHS T&T will need something to do with its capacity after COVID, and the country requires a testing infrastructure to remain.

There will likely be a range of additional tests which can be moved to the ‘post-back and test’ approach of Test and Trace; SH:24 has shown how to do this at scale, but the broken model of Public Health England prevented equal benefit for all. And when such testing moves into the NHS, all of the existing Public Health safeguards and ring fencing around such data collected by NHS T&T will be required.

As with every new technology innovation requiring personal data, these can be used as a mechanism to get laid: creepy single doctors (and others without clear direct care purposes) should not have the ability to view the STD history of those they treat – or go on dates with, having met outside of work – in the way that, due to COVID reforms, creepy single doctors can currently view someone’s full medical history due to the removal of safeguards, with no means for a patient to know when their record was accessed.

Access to individual records for care

The widening of access to records has long been debated within the NHS. And while some clinicians will say how much it helps them, and while some of that may indeed be true, it is far from clear whether the patients involved can know whether their records were accessed where they should have been – i.e. that the wider access was actually useful – or whether their records were accessed when they should not have been – i.e. where wider access was harmful.

NHS Digital keeps records of every Summary Care Record access; these should be made available to each patient within the NHS app (and on NHS.UK when the NHS Login launches there) in order that verified patients can see how their record was used. Without providing that evidence base, any argument for any use of patients’ data will likely be some form of special pleading.

If the public is to have confidence in the broader uses of their data, the ‘new normal’ is going to require the NHS and wider public services to provide the evidence and information people require to assess their trustworthiness. Absent such information, and with decisions being made or influenced by those with other agendas, public trust will continue to degrade. Whether incrementally or catastrophically (as with another care.data) remains to be seen.

The decision to provide this evidence can no longer be ‘kicked into the long grass’; the information vacuum is already being filled. And where NHS IT suppliers such as TTP – which, with its GP Connect Access Record: HTML service, makes information on how a patient’s record has been accessed available to people outside of TPP’s service – do this in ways in which patients themselves cannot see, even if they use the NHS app, it is being filled in ways that are potentially explosive.

Access to records (in bulk) for secondary uses

ONS recently published a new re-identification process for ‘anonymised’ administrative data, which demonstrates that data even less detailed and less specific than data that is currently disseminated by NHS Digital is still open to re-identification – in practice, as well as in theory.

Even if some still assert that pseudonymised data is “not identifiable” – as contradictory as that opinion is to GDPR and DPA 2018 – it is now clear that pseudonymised data can be re-identified. NHS policy and practices of dissemination can no longer ignore the law, or the published work of the Office of National Statistics.

Some developments during the pandemic, such as openSAFELY, which while impossible even to establish without emergency COVID powers, probably should be incorporated into the ‘new normal’. But not simply as they are. Each such initiative must have a proper ongoing legal basis – by which we do not mean infinitely-extended exemptions, such as perpetually renewed s251 support, but proper involvement of data controllers – and robust information governance for every project: all projects being approved by a statutory public body with a reputable, transparent process approved by data controllers. 

Consensual, safe and transparent use of patients’ data is the only sustainable long term model; completely lawful, and with the appropriate governance and patient visibility to be trustworthy that is absent around the cabal of friends we see with some entities.

Public bodies can Improve The Foundations of other priorities

The move of (much of) PHE into the NHS is not new. The cancer registry was moved from PHE to NHS Digital due to the failures of PHE, and the opportunities available for better cancer data within the NHS are already being delivered, following that move. That the cancer registry has applied the National Data Opt-out since 2018 did not cause harm to data users, so there is little cause to worry that any other lawfully-operating disease registry will lose out by moving within NHS Digital.

As the future location for all of PHE’s other responsibilities remain unclear, an approach based on ‘offline harms’ would – given the new bodies’ remits – allow a new advisory committee to cover anything beyond DHSC’s National Institute for Health Protection and the NHS, and ensure no gaps.

NHSX / NHS Digital reforms: One cannot build on toxic foundations. Any ‘reform’ that merged NHS Digital and/or NHSX into NHS England (and Improvement?), would be fundamentally unworkable. The body that makes commissioning and decommissioning decisions cannot credibly claim to both make decisions based on evidence and be the statutory safe haven for medical records, without patients equally credibly believing their records were used to close their hospital – even if such a belief is incorrect.

‘Artificial Intelligence’: Using its purchasing power to insist on a scheme of commodity pricing, the NHS can ensure both a competitive market for health AI – giving patients the benefits of new services, NHS medics tools and diagnostic assistance they can use, and innovators the confidence they will be able to get a reasonable return for a good investment – while also opening up the worldwide use of NHS-class services and tools.

Documents:

The data flows of Universal Credit

Over the last year, medConfidential has been examining the systems and information flows in and around Universal Credit – a key example of what the former UN Rapporteur on Extreme Poverty, Philip Alston, calls the ‘Digital Welfare State’.

Phil and Sam would like to thank the many organisations working on UC for their help and support, especially Child Poverty Action Group (CPAG). The project, funded by the Open Society Foundations, and working alongside front line support services, charities, campaigners and lawyers will continue.

Today we publish our first report, looking at four key areas:

One focus (Annex 1) covers what DWP knows, and what it should know about how and when claimants are paid. DWP officials have denied to Parliament and the High Court that UC has access to information that HMRC holds; whether DWP didn’t ask, or if HMRC withheld that info from DWP is as yet unclear.

DWP’s own documentation tells claimants which months they will be thrown off Universal Credit due to DWP’s systems’ inability to read a calendar. And indeed the Court recently ruled, in a case brought forward by CPAG, that DWP’s “refusal to put in place a solution to this very specific problem is so irrational that I have concluded that the threshold is met because no reasonable [Secretary of State for Work and Pensions] would have struck the balance in that way.”

Annex 2 examines how risk based verification (RBV) has been used in the benefit system – in particular around housing benefit and council tax support, but elsewhere too – and what that reveals about DWP and fraud.

As we cover in Annex 2A, DWP documents imply UC has been designed so that GOV.UK Verify can never work for 20% of claimants, i.e. those deemed ‘high risk’, against whom 75% of ‘counter-fraud’ resources are targeted – whose cases may in fact be more complex than genuinely risky. (This mandatory ranking process, also known as ‘stack ranking’, is the same process that led to the 2020 A-level grading fiasco.)

Annex 3 takes a deeper dive into how the wider Government fraud agenda impacts on DWP, noting that while DWP may keep trying to keep things secret from both the public and Parliament, the Cabinet Office has recently instituted Government-wide oversight of ‘Fraud and Error’…

Annex 4 addresses DWP’s response to COVID-19, and its effects on UC information flows; what changed, and what didn’t. Annex 4B briefly also covers the ‘home testing’ process for COVID, which uses DWP and Government ‘counter-fraud norms’ – i.e. a credit history check on every applicant – a process DWP is considering as it’s ‘in-house’ identity approach “to replace Verify”.

And, bringing things all together, the core report covers the core parts of UC, and serves as a reference point for our ongoing and future work.

As this work was done chronologically, you may wish to begin with the Annex that interests you most – or, if you prefer, read the Annexes in order and then the main report.

Wider lessons for Government

DWP chose what to automate, and those choices primarily benefited DWP.


Annexes 2A, 3, and 5 contain wider lessons for government, that Departments would already know if they had cared to look; but sometimes the best internal lessons come from outside.

DWP’s own documentation tells claimants which months they will be thrown off Universal credit due to DWP’s systems’ inability to read a calendar. CPAG recently won a case against DWP, where the judge said:

DWP’s “refusal to put in place a solution to this very specific problem is so irrational that I have concluded that the threshold is met because no reasonable [Secretary of State for Work and Pensions] would have struck the balance in that way.”

UC is a large canary in the coal mine, but the ‘fraud’ approach is metastasising across government and will have consequences for all Government uses of data.

COVID’s Butler Review

The Butler Review into Intelligence on Weapons of Mass Destruction (ie the Government’s decision to invade Iraq) had one meaningful outcome – it obliged the creation of the Chilcot Inquiry. The current Review of the UK’s response to COVID-19 by the All-Party Group on Coronavirus must be given the evidence to do the same. 

This Review has other important matters to attend to, so its remit will naturally be constrained. Its main focus while we are still in the crisis must of course be forward planning for this winter, and our future response to COVID-19.

While there will – quite rightly – be much wailing and gnashing of teeth about the history of this pandemic, including the contact tracing app debacle, this will in large part be academic except in what it contributes to the primary goal of getting the Review to require an Inquiry.

History has shown this can come from civil servants, who already know this Government will leave them unsupported within processes they built.

The truth will come out, it always does; the question is, will you help?

medConfidential will publish our draft submission here in due course, and we are happy to help others with theirs. 

P.S. We take donations.

Rest of Government: Data misuse as “Missed Use”

Even during the height of the pandemic, DCMS continues (and continued) its work to share data, including and especially your medical records.

Not all data projects are a good idea – such as when a Home Office civil servant tried arguing it is part of the Home Office’s ‘public task’ to copy the medical records of all women in an attempt to discover sham marriages. In Government, not using data in that way is known as “missed use”.

Powers in the 2017 Digital Economy Act made it easier for most data in Government to be used in that way, with the exception of NHS data. DCMS has now conducted a ‘review’ of how those powers are used, and how they are not, which will recommend removing that safeguard. DCMS didn’t ask for our input, so we did our own review.

In another example of “missed use”, the UCAS form includes a question that asks whether an applicant’s parents went to university. The question is optional, and was originally added for statistical purposes. However, the data generated by that question soon came under pressure to be used for admissions decisions. The rules were changed, and then behaviour changed too – for if your child answers truthfully ‘yes’, they may be ‘penalised’ in favour of those whose parents did not go to university. As it is an optional question, there is a third choice which every university application coach tells their teenage clients to use: just don’t answer that optional question – thereby being both truthful (by omission) and avoiding any penalty for their parents’ education. 

Those who cannot afford such coaching, but who go to schools where having a parent who went to university is common, are therefore at a significant disadvantage. This is a stark illustration of the way in which flawed incentives, created entirely because of claims of “missed use”, can destroy the integrity and utility of the data itself – and now skew the statistics about intergenerational access to university.

Widening participation may be important, but administrative idiocy is inevitable.

Both of the examples above might appear to be clear, logical, even defensible decisions by civil servants following a public task – albeit with narrow definitions and no obligation to the bigger picture, or even any assessment that there might be a bigger picture. Such uses are driven by the simplistic view that “Administrative data is an invaluable resource for public good. Let’s use it.

“Let’s use it”

As pre-Covid DHSC paved the way for the new grab of your GP records, the “public debate” about uses of data continued without any meaningful public debate, and DCMS carried on its work as if the pandemic never happened. Pre-pandemic, the number of “round tables” and “expert panels” advancing cases that were entirely guessable from their titles was already ramping up, as useful idiots (and those chasing funding) made themselves useful to a wide-ranging programme in the data world, e.g. page 8.

Meanwhile, the “public awareness” effort was (and is) more subtle and better planned than that of the early days of care.data in 2013-14, but it is no less flawed. If you happen to attend one of those events, when they restart, one good question for the panel would be this: “What would make you take a different view on this project – is there space for diverse views, based on information you’ve not yet seen?”

In another example, it was perceived risk of ‘missed use’ that undermined appropriate scrutiny of a data request for a ‘causes of cancer’ study. That the study was run by a tobacco company didn’t stop Understanding Patient Data later explaining why cancer patients’ data should be used by a tobacco company. Will the gatekeepers and their defenders keep justifying anything that passes through their gates? The tobacco industry faux-naïvely asks how a richer, more statistically-informed ‘debate’ about harms can be anything other than a good thing – while the debating points are based on cherry-picked data, with misleading or disingenuous framing. 

The only way to avoid such issues is to tell every patient how (their) data is used, what their choices are and how they work. Because there will always be incentives that make it in someone’s interests to use data in ways that undermine the promises made to data subjects.

An ‘academic project’ to look at the effectiveness of justice and education incentives could be a good thing – especially when subject to peer review, published in a peer-reviewed academic journal, and subject to usual academic funding rules. But this project was commissioned by the Home Office, and its ‘academic’ input appears limited to that of a librarian wearing a fig leaf.

Data librarians do a vital job, and there is great value in well-curated data. Academics too are vital, but policy-based evidence-making – where the only real choice is to do what the Home Office has commissioned – is not academic research. Such ‘research’ may be legitimate to inform civil service and/or political action, but it is not an academically led process. So why is it being funded by UKRI / ADR, using resources that should be going to bona fide academic research?

The data to which ADR has access is detailed and sensitive personal data, for legitimate research. It is self-evidently wrong for ADR to claim the data it holds “is no longer classed as personal data” – classification by ADR is irrelevant, what matters is the law. And even their own academic specialists disagree: “Safe Data. This is a misnomer” – both GDPR and DPA 2018 are explicit that pseudonymised data is personal data. 

Always even more data

There are endless claims that “more data” is needed. Always more data, and “legal barriers” are forever being cast as the biggest problem – hence the Digital Economy Act Part 5. But three years after the DEA was passed, how many pilot projects for public service delivery in England did Government (or government) approve in the last year? Zero. None. Zilch. And how many have Departments proposed to run? Zero. Nada. None. (Although there is one single project in Scotland.)

Despite not even having made use of existing powers, Whitehall now wants to ‘loosen’ the rules around access to health data in a very similar way. Having provided no evidence of benefit – nor even of pressing need – the problem claimed is still “not enough data”.

It is inconvenient facts such as these that are most often omitted from, or masked in, the endless briefing packs for ‘public acceptability debates’. It’s almost as if the most toxic desires and projects are pushing the agenda, while never actually themselves going forwards. And, as history has shown, focusing solely upon a singular objective or key result as justification to expand powers or drive policy is fundamentally toxic.

One good thing about the Digital Economy Act was going to be that all of the decisions taken, the minutes and related papers were supposed to be made public in a single register – but they aren’t. It should not be only the privacy campaigners and their pesky FOIs that get to see what is going on; DCMS has gone back on its promised approach, and is hiding as much as it can.

medConfidential has been asking since January 2019, and had a stream of excuses – the latest being that the pandemic means that while DCMS’ data work and agenda continues apace, officials can’t publish anything because of it. We wrote to the Secretary of State in May, and were told that the DEA ‘review’ would be published “shortly”. We won’t be holding our breath. And once Government believes Covid has passed, we can start chasing these again.

Everyone should be able to see what is done with their data. In that clarity lies an informed debate based on how data is actually used – not just special interests pleading to do more of whatever it is they want to do. The decision makers should not be the op-ed pages of the national newspapers, but rather properly-informed data subjects, making choices based on the truth.

The first care.data programme collapsed after official assurances were shown to be false. The problem was not the fact that many believed, in good faith, that what they were being told was true. It was the fact that it wasn’t.

“Why should I care?” is an entirely legitimate question about data use. A better question, however, is: why should anyone have to take on trust what the public briefings say about it, or choose to exclude?

Six years on, we have a new Government, a new data environment, and exactly the same policy debates. Do you really think – as HMG privately does – that people care less about their data now than they did six years ago? And do those putting their professional reputations on the line (again) really believe they’ve been told everything?

It is one thing to be opaque and deceptive; it is far worse to be transparent and deceptive. If you combine a barrel full of wine and a teaspoon of sewage, what you get still looks like a barrel full of wine. And public bodies will spin their figures to say that it’s statistically safe to drink – while they reach for their gin…


Documents:

  1. medConfidential’s Review of Powers in  the Digital Economy Act (which DCMS didn’t ask for). This was written before the ADR RCB was abolished but our comments are on process and information provided to decision makers, not the name of their committee)
  2. How HMG used credit checks for covid test eligibility

At the bottom of the valley between two peaks

The people who know the most, do the most; and in this pandemic, they have seen the most, and they’re all horrified. Expertise and knowledge can be tiring in a crisis – especially one that has run for this long – and it’s been 12 weeks since we published ‘apps for the next pandemic’. 

Dunning-Kruger provides an energy all of its own, and profiteering and cronyism are inherently at their worst in a crisis as new procedures are being stood up and bedded in, before the ‘loopholes’ are ironed out.

We have already seen political thuggery happening to aid mercenary cronies, stories of which percolate out over time. The point of (good) Government is to endure and be resilient; the ‘PR-first’ approach of Number 10, blaming everyone but themselves ‘or the NHS’ will work only until it pivots to a target who has nothing to lose from an honest and clear articulation of reality, grounded in genuine compassion for victims and their families.

Part I – Process and Priorities

Public Health 

The Joint Biosecurity Centre (JBC) could represent a welcome return to some of the structures of the Health Protection Agency, before it became part of Public Health England (PHE). If it performs well, it should remain as an expert DHSC body reporting to the CMO and Parliament.

Over the last 19-30 years, the UK has developed a dysfunctional obsession with ‘security’ above ‘public health’, one result of which is the slow motion car crash exemplified by the unreformed ‘institutionally ignorant’ Home Office’s use of power and spin to hide itself. Theresa May took this into Downing Street, and Boris Johnson carries it forward.

Being alert to the risks of only ever solving the last crisis, and as PHE falls apart due to long-term senior management neglect, care must be taken not to forget those parts of PHE that are not merely in response mode right now. The JBC must be as rigorous and as transparent as a normal public health body. And while the breakup of PHE is beginning, what replaces it must be far better managed than the ideological bonfire that created it.

NHS Digital is taking on the data functions, but what does the ‘glue’ look like between (what we must hope will be) an increasingly functional JBC, and (what are evidently) increasingly functional local public health responses? 

The line between NHS and Government is blurry

Those who are competent understand that things will always change, and that doing the right thing is welcome – however long that takes. It is unclear what will happen when goodwill runs out, but squandering it on politically opportune frivolities may prove unwise… 

The cultures of DHSC and NHS England enable fudges to continue, undermining everything up to and including the narrative of the Secretary of State. Though some may be calling for heads, changing a Director General mid-stream is unlikely to achieve anything positive and would likely cause significant disruption, generating even more disarray and dishonesty. NHSX already lacks sufficient numbers of staff who are both experienced enough and incentivised enough to ensure that the truth is told to them, and to then tell the truth to power – had power ever wanted to hear it. 

More data can mean better decisions, but only if people want to make better decisions. 

That NHS England (now within NHSX) has got away for so long with telling one group of people one thing in one room, and different groups the opposite in others, represents a political failing of external actors and institutions – both research bodies and NGOs – who were seemingly more interested in DHSC ‘carrots’ than the truth. Entirely predictably, the wider cost of these ‘bribes’ has now come due… 

The contrast between the Nuffield Council on Bioethics’ briefing on ‘immunity certificates’ and the typically hedged ‘explainer’ from the Champions for Digital Exploitation and Intrusion, whose narrow-mindedness and sycophancy in a broader context shows through in its AI barometer, is telling. Rather than championing the public interest, CDEI seems to have written a Vultures’ Menu for Venture Capital (including CDEI’s landlords) and Government’s favourite AI mercenaries.

Political decisions (and the app): 🤷‍♀️🤦‍♂️ 

NHSE/X promised transparency to the public back in March.

Three months on, this remains substantially undelivered; FOIs have been refused / delayed, and it has taken threats to sue to get parts of the most basic of information released. DHSC only published the COPI notices because Hal at The Economist already had. Evasion, delay and obfuscation are basic techniques in DHSC’s and NHS England’s playbook, and – given we are in a health crisis – Number 10 has taken that playbook ‘to scale’, not least because they are relying on what DHSC tells them.

The public will continue to support the NHS, and at this point it appears NHS England has more institutional power than this current Number 10. The infection rate in care homes (and in the NHS) may be ten times the community infection rate, but this is widely seen as being down to a Government that failed to give the NHS and social care sufficient resources, and a Number 10 that then covered it up.

It requires a fundamentally different skill set to run an institution where people remember promises, than it does to campaign as an outsider. The institutional advantages that parts of the NHS and Government have used throughout the crisis – to drive an evolving narrative, and to deny history – will come back to bite, ferociously, if the Government is still around. Especially while people continue to demand answers promised months ago (where, for example, are the missing files ‘embedded’ in the DPIAs?).

Government may be able to hide from the public for a while but, as history has shown repeatedly, the cover-up is always worse than the crime.

Part II – Priorities and Process

As we prepare for the second peak and what comes after it, the Overton window is exceptionally wide. Many ideas and a lot of ‘old thinking’ have been used up in Wave 1; we are going to need a refill for Wave 2. Possibly the most brutal outcome of its initial response is that, minus the cost of the body bags, this Government has ‘freed up’ 13.6% of the social care budget, which has to drive some change.

The consequences of trauma

The distrust – and carelessness – with which DWP treats those who the NHS believes are ill is as callous as it is calculated. Meanwhile COVID-19 can affect anyone. There are already patients who have a form of COVID that’s lasting for months, and what’s certain is that there are people who will be suffering with the consequences of COVID (and the consequences of those consequences) for a very long time.

Civil servants across government are under immense and sustained strain right now. Some of them will require support afterwards, as will many of those on the NHS front line, and many more in the wider community. Some of that support will be provided by DWP, and Universal Credit. Pushing the most vulnerable through an assessment, appeal process, and tribunals (that DWP mostly loses) adds far greater cost to the public purse than simply believing the NHS evidence that was provided to DWP in the first place.

To those civil servants advising on or making decisions about the social safety net that will exist for the most vulnerable in society: choose wisely! More than one of your friends will likely need it, as others already do and many, many more will. Those gaps you help cut in the social safety net under COVID-19 are ones your friends and family may fall through.

What to do: be guided by transparent science… 

While political indecision masked as “following the science” may have got us into some of this crisis, it is ethical open science and research-level transparency that offers the best hope to get us out of it.

No-one expects every cancer research project to cure cancer; no-one gives money to Cancer Research UK expecting that CRUK already knows exactly what the right answer is. We trust instead that they, and those they fund with our donations, will genuinely follow the science.

In the COVID-19 crisis, we have seen leadership from some epidemiologists and researchers showing the public what research can and is being done – consensually, safely and transparently – with their data. That work should continue, albeit overseen and led by the NHS and national research bodies, not ad hoc friends of Boris putting out comms and relying on readers to be able to distinguish meaningful research and independent reporting from consummate PR spin

The public have no real understanding of why Palantir and Faculty are building (secret) dashboards, largely because the public have never been shown what NHSE/X usually does with their data, much less what anyone is doing with it right now. This long-term failure of leadership rests with NHS England and DHSC, but significant parts of it could be resolved by simply publishing what NHSX said it would publish back in March – and then maintaining the transparency that was promised throughout the rest of the crisis, and beyond. 

More data can help make better decisions, but it also requires a desire to make better decisions. NHS Digital has had the ability to tell you how data about you has been used since the National Data Opt-out was introduced two years ago – yet DHSC never gave them the green light to launch it, because of political concerns about what will happen when you know how data about you is used.

The second Coronavirus Bill will try to restart the economy with a firesale of public assets and data; there should be a political commitment – required in law for public bodies, and encouraged for those in the private sector who wish to be seen as reputable – that data subjects should be able to see how data about them is used. DHSC has a Department-wide data release register, and can launch data release statements for individual patients within the NHS app, for which NHS Login already works. Launching both of these before it is next in (dire) need of claiming ‘transparency’ might help inform such publicly significant decisions.

…into the long, long term

In bureaucracies, as in life, those who care for longest often win. It’s why an unreformed ‘institutionally ignorant’ Home Office continues to make toxic decisions despite claims it will improve. It hasn’t, and for as long as one racist can delay improvements, it won’t.

Everyone has human rights, and we fight for them all – even if we mostly talk about those particular rights that are within our remit. The effects of COVID-19 are starkly differentiated based on race; black lives matter, and that the statues of some slave owners are torn down should not be the only legacy of this time. 

Boris Johnson clearly wants to be remembered. He may even want a statue bearing his name, and for people to write books about him, the same way he does about others. And, given the deaths in this crisis, they probably will – though not for the reasons he may wish. (Noting we remember the 1918 flu pandemic as the Spanish flu mostly because, being neutral in WWI, they were honest about it and didn’t cover it up. )

The current administration claims to “follow the science”, science often done by those who most often work diligently for years, far from the public eye, without expectation of the fame or glory that a statue denotes. But history will remember them. Eventually.

Statutes built to celebrate events grounded in contempt, ego, hate or suppression sooner or later get torn down. They can and will be replaced with others. It may have taken much more than a hundred years for the first statue of a woman to be erected in Parliament Square, but there will be more statues. The choice is ours. Poor choices are temporary; good choices endure.

GCHQ and NHSX’s contact tracing app

The GCHQ-informed NHSX app requires a central authority which can read (i.e. decrypt) everything the app shares. In NHS language and the language of the law, the app is an ‘information processing system’.

Given NHSX has chosen to build an unnecessary massive pool of sensitive data, it  must ensure that the data is well protected. With combined effort, GCHQ and NHS Digital will likely be good at defending the big pool of sensitive data.

But there is no need to have that data. The best way to make sure data doesn’t leak, is to have chosen the method that never collected it.

Google and Apple’s ‘Exposure Notification’ model does not have a central data authority so does not require the infrastructure that GCHQ suggested the NHS build, a design which requires GCHQ to defend it. 

And GCHQ needs extensive new powers to detect abuse of the system it designed, that Google and Apple’s system makes simply impossible. (Their approach minimises the amount of identifiable data in the system to the extent that it is effectively publishable.)

Those building the NHSX app made a fundamental mistake, and are now trying to cover it up with more mistakes. It emerged at the Sci/Tech select committee that it would be ‘very useful epidemiologically’ to keep the location of where you see other devices, to share where you got infected several days ago, and to “see the contact graph”.

We expect there will be an app for a country in the United Kingdom which uses the Google/Apple API; we are inclined to suggest everyone waits for that one. You can install GCHQ’s code on your phone if you wish – but their job isn’t to protect you or your family.

Coronavirus and NHS data – 17 April 2020 update

[our update for the week after – 24th April – fitted in a tweet]

NHS England is keeping its dashboards hidden away, but the contractors building them left their contracts “accessible via an unrestricted portal” – which goes some way towards explaining why things are still hidden

Despite promises to be transparent, and to publish the Data Protection and other Impact Assessments of what they are doing – as well as the contracts and agreements they claim followed standard ‘G-Cloud’ procurement processes – NHS England and DHSC are staying true to form; demanding visibility of our data, but showing nothing in return.

This lack of transparency only fuels suspicion and mistrust –  especially when we hear the Secretary of State, after melting down in two interviews back-to-back, try blaming the tech companies for his own ‘app-happy’ mistakes. And when we learn the CEO of NHSX has to admonish his staff not to exploit their positions “for personal or corporate gain”.

If this continues much longer, such behaviour – and even more blatant attempts to rewrite history – will not only be seen as a serious transparency deficit, but will raise serious questions about the accountability of those who demand we trust what they do with our data.

“It’s for your own good” is no reassurance when those saying it won’t show how, and for what, and by who.

So where are we now?

Death statistics: Extrapolating using a rough rule of thumb, the current figures we are being given for COVID deaths represent only around 40% of those who are dying in reality. Many of whom are in care homes. Meanwhile, the continuing failure to supply sufficient PPE for both clinicians and carers is an ongoing scandal. Matt Hancock believes a single “Herculean” effort is enough; but PPE gets used up quickly. In reality, the task’s more Sisyphean.

DWP: While each week drags by for those keen to leave the house, the clock ticks even slower for those who’ve been forced onto Universal Credit. For another 2 weeks, they’re still part of a 1.4 million person queue somewhere inside DWP. Support services like Citizens Advice always have insight into the size of the peaks as more and more people claim UC, and sight also of how UC breaks. Such insights will only increase as DWP’s business processes do their business-as-usual things, and comparisons will become clearer over time.

Google and Apple announced their new shared API. Both their API, and the way they have approached it, are the right things to do in this situation. We want to take this opportunity to thank both companies for their positive and proactive outreach to responsible members of the international privacy community. Despite whining from those who made bad early choices, the NHSx tracing app will either be like all the other apps with an NHS logo, or people will install a generic one built by someone who believes in technology assisting access to health everywhere around the world.


Contact tracing: We await news on whether the NHSx app (and DP3T) will be rewritten to use the new APIs. If not, the app will only work while your phone screen is turned on, and you’re using the app – which also eats your battery. The concept of everyone on the tube staring at their phone screen which shows them the number of people they’ve ‘been in contact with’ today is not one likely to reduce public anxiety.

Tracing beyond the border of England: Given its and PHE’s remit ends at the boundary of England, when (or if) the NHSx app launches, it is not at all clear what will happen to those who are close to Wales or Scotland. It’s likely many people will not be best served by installing an app on their phone that is based on a political and bureaucratic boundary which is more limited than they are…

‘Immunity certificates’: With little more than the sound of a starting gun from Matt Hancock to go on, it is still far from clear why or how these will be useful. But harsh lessons from history tell us how such “immunoprivilege” can be actively harmful, both personally and economically; even the editor-in-chief of the Lancet has pointed out they’re not helpful. We must reserve judgement until more information is forthcoming, but for now, we have questions (to which you are welcome to add).

Perverse incentives: When bars and restaurants reopen, will the old ‘smoking areas’ be transformed into sections for those with compromised immune systems, or for those with COVID immunity? Either way, HM Government will need to avoid creating perverse incentives around self-reporting of antibody tests. NHS incentives are all for people to be honest, and to get the best care – but HM Treasury (which knows the price of everything, but perhaps the value of much much less) still won’t reassure your racist uncle that the people wearing their ‘certificates’ who ‘look a bit foreign’ have actually met the criteria. Wrong information in an already toxic culture just makes things ten times worse (or maybe half that, e.g. 5G).

As much of the magic thinking around contact tracing without mass testing dissipates, and as reality – both technical and biological – bites, we sincerely hope the next magic roundabout ride on apps for immunity measuring will itself be more… measured.