NHS Data: A Treasure Trove for Tech Giants
The National Health Service (NHS) in England holds one of the richest and most comprehensive sets of health data in the world. Every interaction with a GP is recorded in a standardized and machine-readable code, creating a vast database of patient information that can be used for research, planning and improving care. However, this data also attracts the interest of tech giants, who see it as a valuable resource for developing artificial intelligence (AI) systems and products. The government is about to award a £480m contract to build a new database of patient data, which could potentially give access to private companies and raise privacy and ethical concerns.
The New Database: A Step Forward or a Step Back?
The government claims that the new database, called the General Practice Data for Planning and Research (GPDPR), will make patient data more consistent and accessible across the NHS. It will collect data from GP practices in England and store it centrally, allowing researchers and health organisations to access it for various purposes, such as monitoring diseases, developing treatments, improving public health and planning services. The government says that the data will be anonymised and protected by strict rules and safeguards, and that patients can opt out of sharing their data if they wish.
However, some healthcare workers, privacy campaigners and legal experts are alarmed by the government’s plans. They argue that the new database will undermine the trust and consent of patients, who may not be aware of how their data is used and who has access to it. They also fear that the data could be exploited by private companies, especially tech giants, who could use it to develop AI systems that may not benefit patients or the NHS. For example, tech giants could use NHS data to create products that compete with or replace NHS services, or to influence healthcare decisions in ways that favour their own interests.
The Risks of Sharing Data with Tech Giants
One of the main concerns about sharing NHS data with tech giants is the lack of transparency and accountability. Tech giants are notorious for their secretive and opaque practices, which make it difficult to scrutinise their use of data and their impact on society.
They often operate in jurisdictions that have weaker regulations and oversight than the UK, which could pose legal and ethical challenges. Moreover, tech giants have immense power and influence over various sectors and aspects of life, which could create conflicts of interest and undermine public trust in healthcare.
Another concern is the potential harm that tech giants could cause to patients and the NHS with their AI systems. AI systems are not neutral or objective, but reflect the values and biases of their creators and users. Tech giants could use NHS data to train AI systems that discriminate against certain groups of people, such as women, ethnic minorities or people with disabilities. They could also use AI systems to manipulate or coerce patients into buying their products or services, or to influence their health behaviours or choices. Furthermore, tech giants could use AI systems to extract more data from patients and the NHS, creating a feedback loop that increases their power and dominance.
The Need for More Public Debate and Participation
The government’s plans for the new database have sparked a public outcry and a legal challenge from Foxglove, a campaign group that defends people’s rights against tech abuses. Foxglove argues that the government has failed to consult with patients and healthcare workers about the new database, and has not provided enough information or safeguards to ensure that their data is used in a lawful and ethical way. Foxglove has also raised questions about the role of tech giants in the new database, and whether they will have access to NHS data without proper oversight or consent.
The government has postponed the launch of the new database from July 2021 to September 2023, in order to address some of the concerns raised by Foxglove and others. However, this delay may not be enough to ensure that the new database is designed and implemented in a way that respects the rights and interests of patients and the NHS.
There is a need for more public debate and participation in the decision-making process about how NHS data is collected, stored, shared and used. Patients and healthcare workers should have a say in how their data is used, who has access to it, what benefits they receive from it, and what risks they face from it.
