For the party manifestos, medConfidential had a single request:
Will patients know how their medical records are used?
How did the parties respond? (Remembering that the Conservatives are in Government, so should have more detail than the opposition parties.)
Quite a bit of good news, if the currently most likely next Government remembers what it said:
“We will put the National Data Guardian for Health and Social Care on a statutory footing to ensure data security standards are properly enforced.” (p80)
The NDG’s statutory footing should be based on Jo Churchill’s Bill (our view) which was published before the election. While the Government didn’t enable the Bill to go to Committee, putting it as a Part in the forthcoming Data Protection Bill (mentioned elsewhere in the manifesto) should not be controversial. Allowing the Data Guardian to ‘follow the data’ means that public health copies of NHS data are also covered, and therefore can be properly consented.
“We will give people new rights to ensure they are in control of their own data “ (p79)
It’s impossible to control what you don’t see – so a citizen’s view of Government data use (or a patient’s view of the uses of their medical records, or a customer’s view of commercial data use) is a prerequisite for control.
Whether “control” means taking back control from those who would copy data “for the greater good” in secret, e.g. for “decommissioning”, or whether there will simply be transparency and accountability over where data is copied, it will be hard for anyone to argue that this line does not commit the Government to a single overarching opt-out from secondary uses of medical records – in line with Caldicott 3.
“to ensure the very best standards for the safe, flexible and dynamic use of data and enshrining our global leadership in the ethical and proportionate regulation of data” (p80)
While this isn’t quite consensual, safe, and transparent, it is a beginning. However, with the Data Controller in Chief believing there is no data use that could not be ‘proportionate’ – on the tautological basis that if it is being used, then it must be proportionate – this will likely lead to controversy. The scale of problems will be determined by the level of secrecy we refer to in our previous paragraph: will there be secrets?
We acknowledge that this is, however, an improvement over the current state of affairs – having the conversation is far better than not having it at all.
“To create a sound ethical framework for how data is used, we will institute an expert Data Use and Ethics Commission to advise regulators and parliament on the nature of data use and how best to prevent its abuse.” (p79)
While this may sound good in theory, in practice – as we’ve seen with Google DeepMind – such advisors often end up acting as a rubber stamp for deniable practices. That is, when they’re not ignored entirely. Whether this Commission will have teeth, or will have failings similar to those of the various other bodies created recently, will depend on the details.
We look forward to the consultations…
“…we shall roll out Verify, so that people can identify themselves on all government online services by 2020, using their own secure data that is not held by government. We will also make this platform more widely available, so that people can safely verify their identify to access non-government services such as banking. We will set out a strategy to rationalise the use of personal data within government, reducing data duplication across all systems, so that we automatically comply with the ‘Once-Only’ principle in central government services by 2022 and wider public services by 2025.”
Alongside the commitment to safety, this suggests that the privacy protections of Verify can be used to solve the design failures of the pornography rules in the Digital Economy Act – although we don’t expect Verify to be renamed ‘PornID’ any time soon!
If the controversial proposal for showing ID at a polling station is shown to be necessary, Verify offers a digital mechanism for a non-centralised form of validatable ID, including full “same-day” voter registration, using only a mobile phone (including a pre-paid mobile phone, which can be used to create a Verify account, and then the credential to vote), for free, for everyone. This would be an improvement over the status quo.
The explicit rejection of “sweeping, authoritarian measures” such as the failed Home Office ID scheme is missing, but a wider rollout of Verify – along with services offered in G-Cloud 9, resulting from a privacy discussion with the DG of HMPO – should make any return to ID cards not only unnecessary, but shown to be motivated by other desires. (There’s also no reference to the 53 million genomes project – but, given the delays in the 100,000 genomes project, and the problems with that approach in the delivery of health care, that shouldn’t be a surprise.)
Especially around Verify, but also given the response to wider events, recent weeks have shown the failures of the current digital leadership in Government. Whether digital transformation will cease to come from Government, and instead again come to Government, remains unclear.
Will citizens, will patients, will customers, will users know what these changes mean for them in practice? Will they know how their data is used?
It’s all too easy to forget the human details when you’re working on “great challenges”. Which goes for everyone, at every level, however they claim to represent others. This manifesto (as do the others) contains many fine words, but aspirations aren’t actions. Promises must be delivered, and be seen to be delivered. And those who make decisions based on our data, and about our lives, must and will be held to account – by the people affected by those decisions.
Without access to the civil service, it’s hard for opposition parties to have details on unannounced Government policy – much of the Conservative manifesto quoted above is a delivery of existing work.
“Labour is committed to growing the digital economy and ensuring that trade agreements do not impede cross-border data flows, whilst maintaining strong data protection rules to protect personal privacy.”
That statement leaves very little space between Labour and the Conservatives on this topic.
Despite lots of detail on many things, there is no clear policy from the Lib Dems on consent and data privacy, although in a section entitled “Defend Rights, Promote Justice and Equalities”, it says:
“As liberals, we must have an effective security policy which is also accountable, community and evidence-based, and does not unduly restrict personal liberty.”
This is the closest that we get to data. However, since this applies in the secret part of Government, it must also apply in the non-secret parts.
The Green Party & UKIP manifestos haven’t been published as of the time of writing.