NHS Data responses to Coronavirus – 9th April 2020

[For background, please see our earlier posts, “The Coronavirus” and “Apps for the next pandemic”.]

Matt Hancock’s ‘tech vision’ from February now seems to be from another world (our response, drafted pre-Corona is here). The best parts have been implemented already, in the NHS at least – while other parts now look more like digital ideology than things that would have happened if they were a good idea. The tech ‘shortcut’, that people should adapt to the technology before it improves, has been upended; the virus has made the tech companies satisfy the requirements of doctors.

If DHSC had not deferred the decision to tell every patient how data about them is used, public concerns about Palantir et al. could have largely been mitigated by normal NHS processes. Instead, all of the consequences of commentators and the general public not understanding how the NHS uses data are causing work for the Department (and parts of the NHS) at a time when they have little free time.

medConfidential had already drafted a net assessment, which remains all too relevant – as a list of things undone by DHSC, which the NHS would have been able to build on today.

Instead, we have what we have…

So where are we?

Don’t get caught: Many of the companies offering their services to the NHS would previously have lobbied hard to weaken the standards they now seem perfectly willing to meet. (It’s almost as if their previous actions were driven by money, not substance…) Unfortunately for Palantir, DeepMind, Google, Amazon, and others, their previous missteps around data and public trust undermine their claims to be working in the public interest now.

Notices to all care providers: Hal Hodson of the Economist published a scoop of the Notices under reg 3 of the COPI Regulations that care providers are required to do with data what is appropriate to fight COVID-19. (Noting that “appropriate” still includes restrictions and controls that are sensible, practical and necessary.) Those who go beyond this, indulging in unenlightened self-interest, will be examined afterwards – and the public will not be kind to those who exploit others, even if the regulators are slow.

AI Lab: Handing the NHSX ‘AI Lab’ to Mustafa Suleyman of Google DeepMind is not necessarily the worst idea, given the Lab by itself wasn’t due to start for another year – but with the cloud under which he left the company he founded, we hope this move will be productive, and result in fewer gagging clauses and pay-offs to junior staff. DeepMind has previously produced an AI which can tell the difference between viral and bacterial pneumonia; adding SARS-CoV-2 to that seems like a good use of resources. 

Intellectual Property: Following the approach of the Gates Foundation, the healthcare response should commit to building multiple diagnostic support AIs, on different datasets, and with different approaches – and make them all free to everyone around the world. If  DeepMind’s past contracts (now taken over by Google) are anything to go by, how much is the NHS being charged for that model and expertise, and how long will that cheap deal last? The COVID response must deliver results the NHS and world can use in perpetuity, at no additional cost.

Deaths: Many people are dying who are not included in the headline figures. While the NHS is receiving a great deal of the political focus, the effects of the lack of protective equipment, staffing shortages, and long term chronic underfunding in social care are just as severe. And we will see the effects. We still lack current overall death figures – i.e. “all cause mortality” – which cover not just those who had COVID-19, but deaths for all related reasons (so HMG cannot fiddle the figures by, e.g. not testing the dying). Testing only when it has clinical relevance is the right thing to do right now – but it does undermine the current death statistics. (These also exclude inquests, which should cover health care workers, deaths of young people, and deaths where treatment was delayed or were due to the economic consequences of COVID.)

Planning: When pandemic planning was the remit of PHE and professionals, it seemed to be  going relatively well. Now they’ve let CDEI and the ‘Tech Bros’ in, things are going about as well as you might expect from an outfit led by someone whose previous venture helped cause mid-Staffs. These issues will most likely come to the fore with the ‘immunity certificate’ app in the next week or two…

Contact tracing: medConfidential understands NCSC has had input into the contact tracing app, but we have not seen written confirmation that the ‘random identifier’ broadcast by the app will be generated by the app itself, or be read from the phone operating system’s bluetooth mac address (and so be available to others). We believe the app is less broken by design than it was a week ago, but highly controversial implementation decisions seem to have been made for reasons that may provide short-term benefits to NHSX – while dumping longer-term burdens onto the public, without any clear justification. Getting the 50-60% takeup required for such an app will be extremely difficult, especially if those building it don’t invite knowledgeable civil society experts to briefings containing complete answers to substantive questions.

‘Monster factories’: Details on DWP’s blunders are always five weeks behind the headlines, while the Home Office is a monstrosity (mostly) in public view. The NHS is working flat-out to save as many lives as possible, and most of the healthcare workers who have died are from overseas, yet the Home Office changes nothing and continues to increase the burden on the NHS in all aspects of its operations.

‘Immunity certificates’: While Matt Hancock might want his get-out-of-quarantine-free card, the NHSX (for which read, NHS England and DHSC) approach to ‘immunity certificates’ needs to be of a standard higher than anything else they have delivered so far. While the contract tracing app has clear health functions and can be NHS branded, it is unlikely the NHS and public health infrastructure will lead on an immunity app that will be actively undermining the consistent public health messaging. As a result, it seems likely this will be something the unreformed ‘institutionally ignorant’ Home Office may seek to take on, as ‘immunity passports’. The Home Office approach to NHS data entirely aside, it and its Ministers’ and officials’ regard for life and law make the ‘herd immunity’ debate look positively affectionate towards Grandma… [Edited to add: Initial thoughts for comment]

GP data for care: TPP/SystmOne previously took it upon itself to act as a data controller for its customers’ patients’ data, and apparently misled the Information Commissioner about its actions. With an opportunism that would not be unprecedented, the company is believed to want to re-enable that ‘design flaw’ for an unknown period of time. We’ve written to them with questions.

GP data for research: EMIS and Oxford are doing a study for which GPs can opt their entire practice into sharing information on, or relating to, COVID. (They won’t be the only ones.) It is unclear at this point what, if anything, this study tells patients about how data about them is used. A bit of text on a website, which no one knows to look at, is always insufficient.

Transparency: Extraordinary times may require extraordinary measures, but throwing due process out of the window creates even worse problems. Talking about transparency but failing to deliver it is no longer an option, especially if those asking the public to do extraordinary things want to maintain trust and public confidence.

NHS England’s ‘all seeing dashboard’: We have been promised transparency, and that “G-Cloud procedures” were followed – so, where are the Data Protection and other necessary Impact Assessments, the Data Sharing Agreements (surely they have them…) and what about the contracts? At the time of writing, no previews or proper information have been given to the medical or tech press about what NHS England has asked Palantir et al. to build. Does the system even work? 

Happy Easter to you all; our continued thanks and admiration to each and every person working in the NHS and across social care for all your efforts in the current pandemic, and our thoughts and good wishes to all those affected