In an article for The Guardian, Cori Crider, Director at the non-profit digital campaign group Foxglove, explains the history and current plans that the UK government has to access our health data.
The UK government is set to award a £480m contract to build a new database of patient data, known as the federated data platform (FDP), which would bring together data from the nation’s hospitals, GPs and social care into a single system accessible by health service doctors and planners. The FDP aims to address the issue of partial views of patients that are commonplace across the NHS and create a clearer picture of their health, which could help improve efficiency and show trends across regions and the population as a whole. However, the proposal has raised concerns about poor consultation and low patient trust. Many fear that the FDP could give the government too much power over health data and potentially undermine the laws that protect patient privacy.
The frontrunner for the contract is the US tech firm Palantir, which has emphasised that it is “not in the business of mining data, nor do we sell or monetise it in any way. What we do is provide tools that help customers understand and organise the information that they hold.” While NHS England has assured the public that it will control the patient data inside the FDP and put contractual safeguards in place to prevent any supplier from gaining a dominant role in NHS data management, patient trust may still be a significant hurdle to overcome. Statistics for the national opt-out show that the number of patients who have opted out has ballooned over the years to some 3.3 million, which could make the dataset “more random” and damage the value of the health data to the NHS.
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