Update on our campaign to protect NHS patients’ data rights
Since 2021, Just Treatment has been fighting alongside allies to demand transparency, genuine patient control, and an approach to how our health data is used, processed and managed that upholds the core principles and ethos of the NHS as a public health service.
We know that data and technology has a vital role to play in improving health outcomes - but this has to be done in a way which builds and maintains patient trust. Instead, successive governments have sought to rush through controversial plans which lack assurances on privacy and consent, and which often seem primarily aimed at bolstering the profits and meeting the demands of shady lobbyists for big tech corporations.
We fought hard with allies Foxglove, the National Pensioners Convention, and the Doctors’ Association to try to block US spy tech company, Palantir, winning a huge NHS data contract. But in the face of huge public opposition, the Conservatives handed them a £330m contract to manage the health data of every NHS patient in England, so we urged the new Labour government to halt and rethink the plans.
Instead, they doubled down, demanding that every NHS Trust in England adopt Palantir’s “Federated Data Platform” software as quickly as possible. In the face of this authoritarian move, we knew that we had to keep fighting by any means necessary to protect NHS patient data rights.
So we teamed up with Good Law Project to demand a system that is fit for purpose. Our joint action has led to a significant win for patients’ rights, but there’s still much more work to do. Here’s what happened:
Under data protection law, NHS patients have the right to ask that our personal information is only used by the doctors and nurses giving us the help we need. This is known as the ‘right to object’. But after the deal with Palantir was signed, NHS England told two individuals supported by the Good Law Project that they didn’t need to consider ‘right to object’ requests individually, because they operated their own system, the National Data Opt-Out (NDOO). We were concerned that this was not only inconsistent with the law, it meant less control for patients - because the NDOO is narrower in scope than the ‘right to object’.
Even though it sounds technical - this matters a lot, as it defines how much of a say you have in how your data is used. So we started to take the first steps towards seeking a judicial review of NHS England’s approach.
After lawyers got involved, NHS England finally rowed back on their previous position. We’ve got them to confirm that each time a patient submits a ‘right to object’ request around their health data, NHS England will consider the specific merits of that request from scratch, just as the law says they must, instead of applying their own blanket policy, as their previous replies had implied. This means the NHS should now be weighing up the balance between the benefits to the organisation in sharing data and the individual’s right to control their information every time – as the law requires.
This concession by NHS England has strengthened patients’ control over their data. But it’s only a first step. Now, it’s important that this commitment on paper is turned into concrete reality.
In the coming weeks and months, we will be working to support patients to use the ‘right to object’ mechanism where they want to, and we will also be developing public-facing resources which guide NHS patients through how to exercise their rights under data protection law.
Alongside this, we will also be scrutinising and challenging the Federated Data Platform through other methods - including exposing how much public money is being spent on the rollout, sharing insights on the dangers of Palantir and its software, and ramping up the pressure on NHS Trusts to resist the implementation of the FDP.
On top of this, we will be working with allies to stop Palantir being awarded yet ANOTHER major public contract as the government presses ahead with creation of a new “single electronic patient record”. There are many serious concerns with the plans - but the risk that it gives Palantir even greater control over our health data, and embeds the company even more deeply into our health service, should be deeply troubling for everyone who uses the NHS.
As always, we will keep the Just Treatment community updated on this important fight via email and share ways for people to get involved - so watch this space!
We truly believe that the benefits that could arise from new data-informed healthcare are huge. But we won’t see those benefits if the NHS and the government are focused purely on pleasing the tech companies pushing for a rapid roll out of these tools with as little public say and oversight as possible. We won’t stop campaigning until we have a health data system that is transparent and accountable, and puts patients' health and rights before corporate profits.