UK: medConfidential Bulletin, 29th January 2021

29 January 2021 — medConfidential

Hello again from medConfidential!

We hope you and your loved ones are safe and well.

It’s been over a year since we last sent a newsletter to you and our other subscribers but, as we promised, we only send newsletters when they’re worth your time.

Data in the pandemic

At the beginning of the pandemic we said we’d keep a “watching brief” – taking steps where it appeared HMG, its agencies, NHS bodies or other entities were not following the law or proper scientific advice. And, as we laid out shortly after, we’ve been keeping a close eye on what is now clear are at best “Apps for the next pandemic”.

COVID-19 is an extraordinary situation, and the Government has taken extraordinary powers. That what’s been done with them has not always been satisfactory or sufficient is a matter for public inquiry (which we weren’t the only ones calling for back in July) but regarding what has been done with patients’ data, several themes have emerged.

The COPI Notices have not always been matched by equal trust or transparency – or in some cases, commercial competence – in terms of information being returned to the front line.

Despite early (false) claims that the masses of data processed would be “anonymous”, and promises of “openness and transparency”, there’s still no published evidence of exactly who has made use of NHS England’s giant ‘COVID-19 Data Store’, nor for what purposes – nor even the full extent of the data that’s been hoovered up into it.

Back in May/June it took legal threats to get NHS England to publish the deals it made with companies like Palantir and Faculty; months later what’s being done with tens of millions of patients’ health data is still clouded in secrecy. (The notable exception being NHS Digital, which not only beefed up scrutiny around its use of GP data but speeded up its governance processes and continued to publish its consideration of requests and data releases.)

What this lack of transparency means is that entirely legitimate uses remain hidden – discarding huge opportunities to educate and build public trust. And, of course, the sustained and unnecessary secrecy means that misuse and abuse are hidden as well.

What’s next

Looking ahead, with the data chasm between social care and health having been brutally exposed – not to mention our public health unpreparedness – it is clear we can expect (at least) a new NHS Bill.

So which of the COVID initiatives will stay? Some are reliant upon pandemic powers for their legal basis, and we will not remain in a state of permanent Level 4 Emergency (as we didn’t over the summer).

We already know PHE will be rebranded / reformed, though it remains to be seen precisely what DHSC’s new National Institute for Health Protection and its adjuncts (Test’n’Trace and the secretive ‘Joint Biosecurity Centre’) will become. Public Health is bigger than just pandemic response; who will keep on top of all the other ‘offline harms’?

Will NHS England destroy all the data in its Data Store as it promised back in March 2020? Having been given ‘all the data’ will NHSX deliver anything useful? (It could start by ensuring proper audit trails for all the Big Data sharing and AI deals it wants to cut…) Will control of England’s COVID-19 Disease Register instead be handed to those who’ve demonstrated the trustworthiness required to manage it for ongoing legitimate and ethical research?

The right governance and full transparency – every patient should know how their data is used – are essential for all of the above. Whether the political will is there remains to be seen.

With commercial interests circling, and post-Brexit trade deals being done far from the public and Parliament’s eyes, proper scrutiny and transparency in practice are more important than ever. medConfidential believes that several of the pandemic response data changes can be made safe for the longer term, but it is going to require a LOT more work to arrive at a ‘new normal’ that is truly consensual, safe, and transparent.

What can I do?

First and foremost look out for yourselves, your families, friends and colleagues. And when offered a vaccine, please take it!

Please do also be aware of COVID scammers, and keep a special eye out for those you know who might be more vulnerable. It is likely everyone reading this (do pass it on!) will know the NHS will never ask you for your bank details or to pay for a COVID vaccination, but many will not – and some may be confused.

Thank you.

Phil Booth & Sam Smith

29th January 2021

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