The Australian ‘care.data’ isn’t going well. Taking its lead from the English plan, the Australian ‘My Health Record’ programme claims to be about direct care and creates a new repository of patients’ data hiding behind a badly-run opt-out process, with minimal publicity that’s all about direct care; those who support it don’t actually understand it, and in the small print, the data can be copied for purposes that aren’t direct care at all. None of the lessons of care.data have been learnt there at all.

Meanwhile, in the UK, NHS England has announced a set of pilots for ‘Local Health and Care Record’ schemes – 3 in May, 2 more in June – which claim to be about direct care, which may or may not create a new repository of data without an opt-out process, and about which all the publicity is only about direct care; those who support it seem not to articulate fully what it is, and in the small print, the data can be copied for purposes that aren’t direct care at all.

‘Just in time’ or ‘Eventually in case’?

There is clear value in the principal public goal of Local Health and Care Records (LHCR): when a patient arrives at a new care setting, doctors should be able to see care provided only hours before – especially when it’s that which may have put the patient there. An obvious example would be a hospital doctor being able to see new medicines, prescribed that morning. This has obvious clinical value, assuming the data is up to date enough – showing data that is as current as the patient’s arrival, not yesterday.

In practice, this would mean looking up records across the system as needed, rather than building yet another pile of outdated data – most of which would never be touched for care purposes, and which could be dangerously out of date if it were. The ‘glue’ required for interoperability is to simplify ‘just in time’ interoperability, rather than to copy data from everywhere ‘just in case’ it’s needed somewhere else.

The driving principle must be the provision of relevant, necessary, up-to-date information. Which, as any serious technologist will tell you, means using APIs – not making and passing around endless copies of data. (‘Paperless’ shouldn’t mean promiscuous…) Building yet another set of out-of-date databases only works for the people who sell and run databases.

The local areas offered as pilots apparently get to choose their own technology for their own needs. But before the ink on the LHCR announcements was dry, there were other announcements about projects that want to copy the data that the ‘pilots’ apparently haven’t yet decided upon. The money is already flowing as if they will.

Clearly they all know something that NHS England isn’t telling the public. Where data is made available to ‘research’, NHS England (as data controller) will also want to use the GP data it copies for its own purposes – clinical performance management and ‘developments’ that skirt the line between research and micromanaging. The National Data Opt Out should apply to these uses – whether it will or not remains to be seen – but even so, the creation of another copy of patients’ medical records, under the control of NHS England rather than doctors, has apparently been mandated without public debate, discussion, or basic honesty.

Will patients be sold the figleaf of ‘direct care’, with other uses hidden behind, in a very Australian way?

However a local care record system is implemented, every patient needs to be able to have clear and specific answers to their questions: who is looking at my data? Why? And what are my choices?

The advocates of dangerous data copying will continue to push for it – while the ‘spawn of care.data’ resurfaces in Australia, the toxic causes of care.data are now reappearing across this country, in the form of ‘data trusts’. Until there is a binding commitment to transparency over all data access, those who wish to copy patients’ information for secret reasons will continue to publicly claim patient ‘benefits’ for activities that are far more sordid.

We have also done a deep dive into the systems, which is possibly far more than you ever wanted to know about local health and care record systems.