NHS data - an incredibly valuable public asset
The NHS holds a huge amount of health data. In fact, it’s the largest set of structured, machine-readable health data in the world. The data is so good thanks to the fundamental values of the NHS as a health service that cares for everyone - that means the data covers all of us, across the UK, regardless of wealth or background.
Responsible use of this data can be of huge benefit, helping improve care and develop new treatments. Patient data has helped the response to Covid, and, with proper safeguards to protect the public interest, more could be done in the future. One estimate of the value of patient data to the NHS puts it at a staggering £10 billion per year.
An asset to be stripped?
Private corporations have also spotted the value of NHS data - and are keen to cash in. They are seeking contracts from the government to provide outsourced data services to the NHS. These contracts can be lucrative in themselves - Palantir’s latest contract is for £23million - but the even bigger prize is access to the data itself. Many companies see public data as a resource they can exploit to develop highly profitable new products and services.
This raises huge questions for the NHS. How far can private companies be trusted with sensitive health data? If private companies are involved, how can we make sure the data is not misused? If NHS data is used by a private company to develop profitable products or services, how do we ensure that the NHS gets a fair share of the benefits? How can we ensure short-term work with tech corporations does not lock the NHS into an expensive long term dependency?
Questions about how private corporations should be involved in NHS data come at a time of rising public concern about lobbying, cronyism and corruption in the awarding of government contracts. Palantir's NHS contracts were all rushed in secret, without an open process and with details only revealed thanks to legal action. Many other companies, from failed investment firms like Greensill Capital to US health insurance corporations like Centene, have responded to the Covid-19 pandemic by stepping up efforts to cash in on the NHS. NHS data will be an increasingly important focus for private companies looking to profit from our health service.
A cautionary tale: DeepMind’s contracts with NHS Trusts
The troubled relationship between AI company Deepmind, a subsidiary of Google, and various NHS Trusts, illustrates the risks for the NHS of working with Big Tech.
The Royal Free Hospital trust granted DeepMind access to 1.6m patient records to develop its ‘Streams’ app to diagnose acute kidney injury. Moorfields Eye Hospital also allowed Deepmind access to data to train algorithms.
The Information Commissioner’s Office (ICO) found that the Royal Free had unlawfully given patient data – but the data has never been returned. Moorfields is now being forced to pay to use the technology developed with the public data it let DeepMind access. Meanwhile DeepMind Health, originally a separate subsidiary with an independent health ethics board, has been swallowed by Google – and its ethics board disbanded.
The blueprint for Big Tech exploitation of NHS data is plain to see. First, persuade the NHS to grant access with promises of helping improve treatment. Next, exploit that access to develop valuable new, privately-owned, products and services. Then, sell those products globally without sharing the profits with the NHS - and start charging the NHS for products which were developed thanks to NHS data.
The collapse of care.data and the need for public trust
Previous attempts by the NHS to develop data systems collapsed because of a lack of public trust. Care.data was a programme to transfer all patient data from GP surgeries to a centralised database. This aimed to support resource planning and research to improve care. Plans included linking the data to other NHS datasets and offering potential to external parties, including academic researchers and private companies.
The scheme was dogged by patient mistrust. A lack of consultation, a poorly designed opt-out process, and the involvement of private companies caused widespread concern. Mistrust of the scheme led to huge numbers of patients opting out of their data being shared.
The level of opt-out was so high – some 1.2 million patients - that in 2016 the NHS was forced to abandon the programme.
The future of NHS data: a story that could go one of two ways
We could make the next chapter of NHS history a story of using our collective health data for collective good. We could give patients a say in how data is used and how their privacy should be respected. We could build up the capacity of trusted NHS staff to use data well, improve the NHS’s own data infrastructure, and avoid over-dependency on private companies.
But that’s not how Big Tech companies like Palantir want the story to go. And it’s not how Health Secretary Matt Hancock seems to want it to go either. Unless we speak out, there’s a risk that the NHS slides into a long-term dependency on expensive US tech firms to analyse their data. And that Big Tech exploits and abuses its access to our health data, privatising the benefits of a resource that belongs to all of us.