Introduction

The Alan Turing Institute’s Data Ethics Group engages with the NHS to work towards a comprehensive and ethical approach to the use of data science in the healthcare sector.

The NHS, like other public bodies, is looking to discover how the use of technology could improve its services while at the same time help it respond to budgetary pressures and increasing demands for high-quality services. There is clear political will in this direction. In its Grand Challenge missions, the UK government announces that it wishes to ‘use data, Artificial Intelligence and innovation to transform the prevention, early diagnosis and treatment of chronic diseases by 2030’.

Putting words into practice, the NHSX has recently been announced – a multi-departmental unit that seeks to centralise and streamline the modernisation and digitisation of the UK’s healthcare system, including representatives from NHS England, NHS Digital, and NHS Improvement. 

Technology and data-driven innovation could, in principle, help provide solutions in data-rich contexts such as healthcare, which has a long history of record-keeping. However, the complexities and unintended consequences of implementation and the impacts of such a profound transformation on patients, NHS staff, the wider ecosystem of innovators, private enterprises, public sector bodies, and the wider society should be carefully considered and anticipated. 

The complexity of the healthcare sector, the speed of technological deployment leading to increasing demands for access to information, and potentially wide-reaching impacts on patients’ vulnerability amplify the need for ethical considerations. The Turing’s Data Ethics Group has therefore established an NHS Advisory Group, focused on exploring the use of AI in the healthcare sector. This advisory group combines knowledge and expertise from the fields of medicine, economics, political science and philosophy. The group is led by Frances Griffiths and includes Anne Alexander, Jonathan Cave, Phyllis Illari, Charles Raab, Melanie Smallman, Maxine Mackintosh, and David Leslie.

During the past months, the Turing’s NHS Advisory Group has interacted with the NHS and provided expert opinions and feedback to the NHS code of conduct for data-driven health and care technology, officially launched on 19 February 2019. The Code is intended to form the basis for the NHS’s long-term strategy of developing, procuring and deploying data-driven tools. 

The advisory group stressed the need for ethically sound principles and values to guide the NHS in deploying and using new technologies within the healthcare system, as well as private companies wishing to provide such solutions to the NHS. The NHS Advisory Group also emphasised the need for clarity on how the code relates to the broader NHS mandate, as well as to regulatory obligations including compliance with the GDPR and adherence to bioethical principles, such as those developed by the Nuffield Council on Bioethics.

The group also encouraged consideration of the wider social implications of data-driven and AI technologies on health. The practical implementation and demonstrable compliance with the code were also seen by the Advisory Group as essential if the code is to have the desired impact.

The Data Ethics Group maintains a co-operative relationship with the NHS and looks forward to collaborating on subsequent iterations of the code of conduct in order to ensure an efficient, accurate, accessible and ethical modern healthcare system. More widely, the Turing’s NHS Advisory Group will continue working on the ethics of healthcare digitisation, seeking to engage critically with the use of data-driven solutions. 

The author thanks the members of the Data Ethics Group for their contributions to this text.

 

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