The consultation is supposed to be about using data to help citizens; but the proposals and principles are about how Government thinks it can do one thing to help all citizens – that seems unlikely.
Yesterday, the Cabinet Office opened their consultation on copying everything but medical records. It is a consultation, not about data, not about citizens, but about Government. It’s officially about “better” use of data, but “better” in this term seems to mean “more”, not “improved”.
As care.data was about NHS England not patients, the same #datacopying mistake has been made.
In short, this consultation is the latest step in the ongoing data debacle of Government. Rather than suggest learning the lessons of care.data, most of it doubles down on repeating the failures by institutions and their shared worldview of an office near the Thames.
We find out within days what the Caldicott Review will recommend, and see where the NHS thinks this should go. If the Cabinet Office were accurate about having worked closely with DH, then this consultation does not look positive.
A blog post by the Data Sharing network will appear shortly (we’ll update this post) on how the process reached this point.
The relationship to medical records
At the launch meeting for the consultation, the Cabinet Office said that the lessons of the Caldicott Review of consent had been considered, and this consultation was working with the Department of Health team. I can only hope that Cabinet Office paid as little attention to what DH were saying as they have paid to others.
The NHS number makes an oblique appearance, in part 3 below; although it’s only in the original consultation document if you know that it’s there.
The Cabinet Office consultation
We’ll publish a detailed blog post in the next week, and a shorter less technical newsletter shortly.
This consultation is not what we expected – and it is a disappointment.
If the Cabinet Office have understood and learnt the lessons of care.data, it is entirely unclear which lessons they think they’ve learnt. We understand Paul Maltby, the Tim Kelsey of the Cabinet Office, will blog on this topic later this week (we’ll add a link when that post appears).
This consultation proposes doing many more things to citizens; it does not propose doing things for citizens.
For the first time, the local authorities lobbying for access to medical records to give to landlords were in the room.
Minister Matt Hancock says in his introduction to the consultation:
“Citizens too have a strong expectation that data will be used responsibly, proportionately and securely ensuring that their data is respected and handled sensitively.”
Unfortunately, the consultation doesn’t consult on those issues, or address them. It assumes that Government, and especially the Home Office, will do those things, and the data copying is an automatic result. The consultation assumes that Government will always know what is best for everyone. Care.data shows both assumptions to be fatally flawed.
The three parts
1) Data copies for individual citizens
In the Fraud, Debt, and Delivery strands, all of the examples shown are where a citizen interacts with one Department, and wishes to access data from another. As the citizen is already involved, there is no reason the citizen can not give their explicit consent to the data being accessed, and the relevant facts attested by the second department. Copying big datasets round doesn’t help the citizen, but it does give departments more data to lose. APIs on an individual basis, as consented by that citizen, allows for fine grained control and the citizen to be able to say no to Officials, rather than purely the other way round.
There are principles here which can be simple to express:
Ask the citizen; then do what they say.
That Government can do certain things for some, it doesn’t mean it must for everyone. There may be new legal gateways required to access a citizen’s data when permitted by that citizen, but that’s not what this is currently proposing.
2) Data copies in bulk for research & statistics
There is no publication requirement, there is no notification requirement, and the consultation asks the public questions to which Parliament has previously refused to answer. “What is research?” is not an appropriate question for a consultation.
That question especially suggests that, yet again, “research” is used as a fig leaf for less legitimate copying – hiding being research is a common tactic. The separation of identified and de-identified (which is still identifiable at the volumes being discussed, but they used to be able to pretend it wasn’t).
This section requires refinement, although bona fide research in a safe setting with strictly controlled copies of data is a feature we hope to see from the Caldicott Review. It’s not the only outcome of the consultation.
Due to the volume of GDP at stake; paragraph 119 should have been explicitly covered in the consultation. That this is not a question will prove an interesting case study in the politics of this process.
3) From Birth, to Marriage, to Death
It is difficult to work out what the Home Office is trying to do here. They don’t have coherent answers to questions in private, but their proposal allows them to do whatever they like with the births, marriages, and deaths records. That includes bulk access and sharing for a variety of purposes. It appears the NHS Number is used as unique identifier for DWP for benefits, which is of deep concern.
We will consider the many examples of unintended consequences in future posts, but this makes care.data look like a prototype.
Items 1 and 2 can be fixed in consultation, but this part requires the blank sheet of paper that the Cabinet Office have so far refused to offer in discussions, and will likely require a change to move this part of Government out of the Home Office. This section was snuck in by the Home Office at the last minute, rejected by civil society because at no point did the Home Office provide any details, and pushed into the consultation and legislation for reasons of bureaucratic self-interest.
Which sounds just like the #IPBill that launches later today…