Where is the consultation on any ethics?
As care.data was in the NHS bureaucracy, this consultation is about doing more of what Government been doing already: Not better sharing, just more copying.
If this wasn’t about databases, the same consultation could be had about buying more filing cabinets, ink, and scribes.
The approach and consultation strengthens the groupthink of the last decade, where parts of this legislation originate. It may look as if there were no lessons from recent years, but there is a reason this consultation looks that way.
The lessons of recent years have been entirely ignored.
The published “data science ethics” framework could have be used to justify care.data, in any of its disastrous forms. No one involved in the programme would have had any problem ticking the current boxes.
The original draft framework was much more challenging. Even when it had been turned into the same 10 point civil service language before the election, the challenge to the status quo remained.
When the post-election Director of Data took an ethical framework round the Departments, they hated it… “Start with clear user need and public benefit”
What the Departments wanted was to keep doing what they’d been doing all along. And so the Cabinet Office destroyed a credible ethical framework and became lap dogs to mass copying of bulk personal datasets… “Use data and tools which have the minimum intrusion necessary”
It isn’t quite the same process that created care.data, but the outcomes will be the same… “Be alert to public perceptions”
The NHS has had 3 years of data pain as those who use data repeatedly fought to keep doing the same thing they’ve always done, or more of it. The Caldicott Review will say how that should change. A review whose publication has been delayed by Whitehall until the day before the Cabinet Office consultation closes – published before so they can say it was published before, but 36 hours before the closing deadline so it can’t be digested… “Be as open as possible”
The response to this consultation should be simple:
“No to secret and invasive copying of identifiers”.
Yes, to offering a citizen a choice whether their data can be used to make a transaction easier for them;
Yes, to democratic decisions about when the above question isn’t asked;
Yes, to every citizen knowing how individual level data about them is used, whereever it is used;
No, to s152 to the Coroners and Justice Bill 2009 (under a new name).
Details
The Home Office part of the consultation creates arbitrary gateways, for the civil service, not for the citizen. This is data copying done to the citizen, not for the citizen. This is not about the Home Office – they wrote the example, but the legislation came straight off the Cabinet Office shelf.
Local authorities see benefits to sharing medical data with landlords; and why wouldn’t a local authority want to tell their department that deals with social housing to know what benefits a citizen is entitled to? There are also many reasons a citizen may not want their landlord to know a fact that could be legitimately shared for others. This problem can not be addressed at a national scale. It can only be addressed by the citizen being able to give or withhold permission as part of each transaction. Insurance companies will take any data you offer them, which is why the GP profession uses a standard agreed form with just the information needed.
Parents want better statistics on local schools, but giving parents access to the detailed school histories of 20 million children, including all their offspring’s classmates, is likely unwise.
There are undoubted benefits for an individual and for government in data from one department being visible by another, it must only be done with the citizen’s individual consent. Unless choice doesn’t encourage better service…
Digital services should be so good that people choose to use them, not so creepy it doesn’t matter whether citizens use them.
Legislation may be needed to create a gateway, but it must be up to the citizen whether they choose to walk through it, or choose to go a longer way round. The requirements for use of a service should be the same (“prove you were born”), but whether it is an API or a birth certificate should be the citizen’s choice.
Some citizens would be entirely happy with all their data being used; some, otherwise. But it is impossible for the central government data team in the Cabinet Office to tell the difference – they never deal with citizens in the course of those transactions. It is entirely possible to be well meaning, good intentioned, and utterly destructive.
There needs to be a good ethical framework, not one that is designed to be the lowest common denominator, acceptable to all projects that evolved without one. As the forthcoming Caldicott Review will show, some of the existing data projects have not met the standards that should be expected.
Caldicott will suggest raising the standards and fixing all NHS projects; the Cabinet Office lowered the standards and ignored the broken projects. The NHS tried the cabinet office approach, which is why care.data is in it’s third year of suspension. It’s not that they don’t know how to fix it, it’s that the people who can prevent it being fixed like the current setup more than anything that is publicly acceptable.
There are reasons for bulk personal dataset use powers, sometimes with opt-outs, sometimes not; but they must all be statutory and subject to a discussion and vote in Parliament. Some aspects of research are only possible at large scales, and whatever the reason, citizens should know how their data is used, and the results of those things.
Civil Servants should serve the citizenry. It is data about a citizen, which is much more personal, in a similar way to it being “taxpayers’ money”.
Departments have long seen the large datasets it holds on citizens as data it can do with as it pleases. The current weak data team in the in the Cabinet Office lacks the ability to change anything, so followed the care.data playbook and hid from any hard questions and hoped no one would notice.
The consultation needs to be noticed, and the data policy needs to change.
How you can help:
The response to this consultation should be simple:
“No to secret and invasive copying of identifiers.
Yes, to offering a citizen a choice whether their data can be used to make a transaction easier;
Yes, to democratic decisions about when the above question isn’t asked;
Yes, to every citizen knowing how individual level data about them is used, whereever it is used.”
More next week…