Partner story

Q&A with medConfidential's Phil Booth

Since we started building our Western Europe portfolio in 2017, Luminate has had the chance to partner with some extraordinary people and organisations in the UK, Germany, and France. We are winding down our domestic work in Europe by the end of 2023, but before we do, we want to give space to the partners we’ve worked with to share their own perspectives on their work, what they have learnt, and what’s needed in the future.

By Phil Booth, Coordinator at medConfidential

1. What does medConfidential do?

medConfidential is an independent, non-partisan organisation campaigning for confidentiality and consent in health and social care. We seek to ensure that every flow of data in and around the NHS and wider care system is consensual, safe, and transparent.

Founded in January 2013, medConfidential works with patients and medics, service users and care professionals; we draw advice from networks of experts in the fields of health informatics, computer security, law/ethics and privacy; and we believe there need be no conflict between good research, good ethics and good medical care.

medConfidential also engages with wider data use across Government because, to a first approximation, the data that institutions of state want to copy most is your medical record. 

2. What are the greatest lessons you've learned over the past two years?

Most obviously, that Governments respond to a crisis with the tools they have – not the tools they wish they had. 

And, these days, crises come thick and fast; Covid-19, Afghanistan, Ukraine, and whatever else is in crisis when you read this. (It will be at least two weeks after it was written, so we’re not predicting anything.)

The Afghanistan crisis blew up over six months ago but, as of now, the UK Government has resettled only a handful of refugees who it was shamed into supporting at the last minute when Kabul fell. What should have been reusable for the Ukraine crisis simply doesn’t exist; that another programme must now be stood up for White Christian Ukrainians, which wasn’t available for Afghans, shows exactly what (and who) the UK Government chooses to care about.

The lesson the UK Government took from Covid, however, was data, data, and more data – along with levels of secrecy, obfuscation, and dishonesty that for our current Government is business as usual; from helping co-found the Open Government Partnership to becoming its basket case in under a decade. 

The managers of NHS England have avowed just 20 data projects in their published register for the entire pandemic; none of the ones that used Palantir. What stinks even worse is that while Palantir’s own ads claim “the NHS relied on Palantir” and position it as “the preferred operating system for the NHS”, the NHS reveals nothing about what it was used for. Indeed, in documents officials encourage the euphemism “Foundry” because they know Palantir is seen as so toxic – a result of the excellent work of many other NGOs around the world.

Elsewhere, the UK’s social safety net, known as Universal Credit (UC), is a ‘digital-first’ (arguably digital-only) system that during Covid managed to cope with hundreds of thousands of people trying to sign up simultaneously. There were queues, of course, but computers don’t care how long the queue is; the programming is the programming. The ability of the bureaucracy to accept that the world has changed is, however, far slower than the time it takes to change the programming – or for the world to change again.

3. What opportunities do you see on the horizon and what are your plans for the future?

When a Government chooses to care, it needs to be able to deliver – which, these days, invariably involves digital systems.

The digital revolution may be succeeding; but those outside Government, and within it, have learnt over the last few years that they were not paying enough attention to negative, entirely predictable but ‘unforeseen’ consequences that could arise as a result.

The UK’s Windrush crisis was triggered by the Home Office destroying the original paper records of arrivals. Officials simply chose not to pay for new storage when the old building was decommissioned in a departmental move. In the 2020s, the Home Office is entirely dependent upon databases and storage providers; its appetite for data only intensifies. But it is still unclear whether the Home Office will always move all records – fully readably, without loss – as today’s ‘innovative’ tech becomes the abandoned legacy of the day after tomorrow.

Where institutional memory fails, civil society must step in. Not just in protest, but with understanding and viable ways forward.

In another example, the UK Home Office refuses to give lawful EU residents official paperwork because its services are all online. So, entirely predictably – when the technical debt of Settled Status becomes too expensive to maintain, if not before – these ‘digital-first’ services will be dropped, and the banal evil of bureaucracy will simply repeat. 

A decade after work began in earnest, the UK’s Department for Work and Pensions shows no sign it institutionally understands what it could use UC for. Meanwhile, the NHS is embedding surveillance tools in its very core, and the culture of the Home Office – using any and every tool it has to deny humanity and to delay agreed change rather than deliver it – is spreading across government and our public institutions.

Civil society provides the moral urgency to respond meaningfully when Government is dysfunctional. But affecting long term change requires civil society to have an understanding of what is actually happening within systems, what is possible, and how to change the machine – not just demanding the machine change itself.

medConfidential believes the only effective action in such circumstances is to make hope possible, not despair convincing. Enabling agency, providing clarity and speaking truth to power, as we defend against the corruption of systems that support people’s lives.

4. How can funders support you right now?

We are open to partnering on other specific scoped projects, and are hugely grateful for the support of Luminate and our other funders.

Not every fight is a public campaign, and one of the most important roles medConfidential plays is to act as a persistent watchdog. Core funding and flexible project funding also allows us to help others enter and navigate the complex, ever-changing landscape around data and digital Government – providing insight and understanding, and informing effective action.

As the UK Government wants to “use data more”, medConfidential has active work across health and Universal Credit (funded) as well as justice and the work of the Home Office (unfunded). 

Read more Q&As with leaders from our Western Europe portfolio.