UK government refuses public review before launch of NHS data platform
Patients must have the right to decide what information is taken from health records, say privacy campaigners
The UK government is refusing to run a public consultation on the expanded use of centralized data analytics on personal health information – under a £360 million ($432 million) contract that spy-tech business Palantir is tipped to win.
Minister of State for Care and Mental Health Gillian Keegan told Parliament that NHS England, a non-departmental body which runs the NHS, is not proposing to conduct an open debate on the nature or remit of the forthcoming Federated Data Platform.
For England's NHS, the Federated Data Platform is a top-down approach to the procurement of a £360 million system said to favor incumbent supplier Palantir, which saw its initial COVID-19 Data Store role expanded to help with the distribution of the COVID-19 vaccine under a £23 million ($27 million) contract let without competition.
The government had promised not to expand Palantir's role without public consultation under threat of a judicial review from news website openDemocracy, backed by tech campaign group Foxglove.
It has since published a prior information notice (PIN) designed to "engage suppliers" in the procurement, in which it said the contract might be worth £240 million ($288 million) — a value set to rise to £360 million if the length of the contract is extended. The PIN said a contract notice, which kicks off the competition, would be available by June 6, but it has yet to be published.
For Palantir, the contract was said to be a "must-win deal" following its recruitment of Indra Joshi and Harjeet Dhaliwal, key figures in NHS England's data science and AI teams.
Labour MP Clive Lewis submitted a written question to Parliament this week asking whether NHS England plans to run a public dialogue about the Federated Data Platform before the invitation to tender is published.
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Keegan, a former veep with Amadeus IT Group, said: "NHS England has no plans to do so."
Instead, she said the June 2022 policy paper "Data saves lives: reshaping health and social care with data" committed to improve trust in the healthcare system's use of data.
"This includes engagement with the public and stakeholders on data programmes and projects, such as research and development, General Practice Data for Planning and Research and the Federated Data Platform.
"We plan to engage through methods including surveys, large-scale public engagement and focus groups, which will inform a public campaign in early 2023 on how the National Health Service uses data to improve the lives of patients. A specific theme of the engagement programme will focus on Secure Data Environments, including the Federated Data Platform."
The Federated Data Platform contract is scheduled to be awarded in November 2022, such that the supplier will be in place and its remit defined well before such information campaigns start. It is set to underpin the government's planned NHS transformation and aid the recovery of elective surgery from the backlog caused by COVID-19's strain on the service.
Foxglove director Cori Crider said: "If this is really as advertised – a massive new 'operating system for the entire NHS' – then the government should consult the public and give people a chance to consent. The government can't upend how it collects, uses and protects our NHS data if it skips those steps. Palantir is part of the problem here – but really, it's the tip of the iceberg."
Other campaigners highlighted the damage to patient trust in the use of their data by going ahead without consultation.
General Secretary of the National Pensioners Convention Jan Shortt said: "Patients have the right to know what is happening to their data well before any mechanism is set up to collect it. Public consultation is a big opportunity to improve the system and ensure our members' data will be safe long before the work of collection starts. To leave this vital strategy until 2023 instead is very concerning.
"Everyone agrees that health data needs to be used better for research, improving services and commissioning others but patients must have the right to decide what data can be taken from their records. Breaches of security have taken place in the past and we are not convinced that the Federated Data Platform will be any safer." ®