A key metric for care, especially complex care, is how patients feel about it. An extremely expensive drug may delay an outcome, but that measures only money and time, not quality of life – which is difficult to quantify. The way the NHS usually does that is via a “Patient Reported Outcome Measure” — how did the treatment make you feel afterwards? Do the patients who had it, feel it was worth the side effects? As a key metric, we would have expected some movement towards a digital “100% PROMs” (as covered here in point 3). A treatment may be possible, and easy for hospitals, but does it help patient outcomes?
As a result of NHS England’s neglect, the data lake will do nothing to improve patient measures (and some issues only appear in PROMS); it’s all accounting measures from NHS England’s accountants and Whitehall micromanagers. Their idea of a consultant is not someone in a white coat, but someone with a calculator. When NHS England talks about improving care, it’s clear their idea of engaging with patients has not improved since care.data was abandoned due to their failure.
The ‘Target Architecture’ document shows NHS England has learnt nothing. As always suspected (and denied) for care.data, NHS England now admits that it wants “near real time” access to medical records: letting their accountants and expensive management consultants in an office second guess your nurse and your doctor who listen to you.
- NHS England’s approach is still driven by its desire to do “near real time” monitoring of doctor and nurse performance – there will be no opt out of accountants looking at your records.
- 125. Sensitive personal and confidential data (which is fully identifiable) will almost certainly be required to achieve interoperability and to facilitate precision medicine and case finding. The NDG Review opt out will not apply.”
- NHS England clearly considers its micromanaging more important than either Accountable Care or CCG/STP access… See the middle box in Figure 2 (p14) and para 40 (p10); more on the fundamental problems with the use of ‘secondary datasets’ for operational purposes in this paper.
- The only reason reason to make this “near real time” (figure 2 – i.e. at least daily) is to force organisations to hand over operational data to those who have no operational role – ‘secret micromanaging of hospitals from afar’
- According to NHS England, patients will have to opt out again in May next year, given the GDPR if they do not want their data used. (This suggests medConfidential will have to run an opt out process since NHS England say it will not be otherwise available to you)
- It does acknowledge two GDPR opt-outs will have to be respected, but in the process it breaks the existing opt-out choice for patients.
- “125… The NDG Review opt out will not apply. However the GDPR Right to object and the GDPR right to restrict processing will apply should a data subject wish to exercise that right and certain criteria are met.”
- Clause 15 of the Data Protection Bill (as laid) gives the Government the ability to, by Regulation, remove those rights. Either way, the Caldicott Opt Out should be extended to cover the opt outs possible under GDPR. Since every patient is being written to, that can be made clear to everyone involved, and they can update their choices according to their wishes in the new environment
Fundamentally, paragraph 125 is entirely in conflict with what the Department of Health implied in their response to Caldicott 3. However, it is NHS England who are expected to organise and fund the individual letters to patients, and it will have their logo on; possibly not a DH logo. Will DH put their logo on this?
- The mishandling of the NHS internal market:
- While section 4.3 in the Annex tries to muddy the waters, stating patient information will be “anonymised or is provided in aggregate views sometimes linked with wider information sources”, in practice these activities are consistently done using identifiable patient data under perpetually-renewed Section 251 ‘support’.
- Lessons from care.data and Caldicott 3 have simply been ignored:
- The document is dated 13 July – just one day after the Government’s response to Caldicott 3, on 12 July…
- NHSE CIO Will Smart said, also on 13 July: “Let’s get away from this distinction between primary and secondary uses of data – it’s just data, let’s start using it”. Source: https://twitter.com/thatdavidmiller/status/885427094464999424
- While nods towards “transparency” and “trust” are scattered throughout the document, with one whole section devoted to the notion of a “diameter of trust”, NHS England provides no indication of how it intends to deliver the Government’s commitments on transparency of access to patients; nothing appears in any of the ‘architecture’ diagrams, or in the text.
- The model relies heavily on the use of “de-identified” data to avoid answering difficult questions that care.data ignored. Such data would clearly be linkable to the individual – how else “personalised care”? – so, unless NHS England proposes to also ignore the Government’s transparency commitments, patients will have to be told.
- This also ignores the critical point that de-identification will never be direct care.
- “… To promote Better Health for all”, para 6 (p3). While prevention must clearly involve ‘behavioural change through information’, a failure to be honest (and transparent) about the two meanings inherent in “promotion” – as in that has contributed to this mess. That they lead off with this phrase may be good – the NHS needs to take a more preventative approach – but it provides cover still for those with more commercial / corrupting agendas.
- Commercial reuse will continue, and expand. As NHS England has failed to convince anyone else that it should get a new data collection, it will instead expand the dataset collected under HES (which it has powers to do unilaterally).
- These new datasets will flow into the “Interoperable regional data hubs” (July), aka “regional data ponds” aka “national data lake” (January), and from there, can be drained by anyone who wants to some data.
- “Information Brokers” (which NHS Digital calls “information intermediaries”) have also expanded beyond NHS, and now include selling access to the cancer registry.
The Department of Health has confirmed that it will write to every patient who has opted out about the new arrangements. NHS England’s long standing refusal to match that for patients who are in the dark risks creating a perverse incentive for those who gave Jeremy Hunt the benefit of the doubt.
One of the changes since 2014 is that there should be a Doctor in charge of Information at NHS England – when the new Chief Clinical Information Officer is appointed, they should not inherit a toxic programme. Care.data contained catastrophic failures as a result of being designed by someone who had never spent a day at medical school.
As they plan the data lake (“regional data ponds” or “interoperable regional data hubs”) has the institutional disregard for patients mean that they’ve forgotten every lesson? Using the language of business, forgetting that no one benefits if the NHS just charges money to itself. There are alternatives.
‘data lake’ is not a clinical term, nor a clinical tool. It’s an IT term, for IT people to talk about large technology projects, and to sell the tools for those projects. The benefits to the NHS are entirely tangential from making a small number of techies in suits feel good about what they’re doing without the “burden” of talking to doctors or patients. Paddling in a data lake, they’re able to talk with confidence – despite their talk being irrelevant to solving problems that front line clinicians and their patients face. The data lake is a solution in search of a problem.
Care.data wanted to link all data and sell it in secret without consent; it’s new data lake links all data and sells it in secret without consent. What changed in the intervening 4 years?
Those who want to read your medical records have had weekly updates on this document since January; we saw it via a leak in August, despite being lied to repeatedly by a co-author about being shown a copy. It is very clear why. No one from NHS England was willing to put their name on the document (Will Smart’s name was on the January version). Who on NHS England’s Board will be expected to sign off on this mandate to STPs?
Despite the rhetoric from the Department of Health, it’s pretty clear none of the details in NHS England have changed. Even the Wellcome Trust – who saw weekly updates – expect the same problems from 2014 all over again.
We will be here…