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Protecting the confidentiality and privacy of millions of patients

UCL has been instrumental in maintaining trust in the use of confidential patient information in the NHS, influencing healthcare professionals, national committees, and the National Data Guardian.

A doctor and patient

28 April 2022

Professor James Wilson is a philosopher and ethicist in UCL’s Department of Philosophy and co-director of the UCL Health Humanities Centre. His research integrates philosophy with other relevant disciplines, such as epidemiology, economics and political theory, to explore conceptual and practical challenges.  

 The research-based ethical advice of Professor Wilson has been instrumental in maintaining trust in the use of confidential patient information in the NHS. It has contributed materially to a number of key decisions and outcomes in UK policy, including:  

  • The prevention of the implementation of the NHS care.data project, thereby helping to protect the privacy of all English GP patients (2014)  

  • An Information Commissioner’s Office finding that Google DeepMind and Royal Free had breached the Data Protection Act (2017)  

  • The withdrawal of a Memorandum of Understanding between the Home Office and NHS Digital, thus preventing the mis-use of patient data for immigration control purposes (2018)  

  • The adoption across the NHS of a new Caldicott Principle for the use of data (2020) 

Protecting privacy without detriment to services 

In 2015 Professor Wilson was invited to become an independent member of NHS Digital’s (NHSD’s) Data Access Advisory Group (DAAG), which advised NHSD on how to maintain public trust in their data disseminations.  The Chair of DAAG states that Professor Wilson’s contribution “improved the protection of the confidentiality and privacy of millions of NHS patients’ records, without detriment to services.”  

In 2016, he was chosen to help NHSD to transition DAAG into a fully independent oversight group, the Independent Group Advising on the Release of Data (IGARD) and was IGARD’s ethicist (2017–18). NHSD’s Chief Medical Officer estimated that the work Professor Wilson did with IGARD to maintain public trust and improve the ability of NHS data to improve patient outcomes benefited hundreds of thousands of patients. 

Appointed by the National Data Guardian 

In 2016, Professor Wilson became the first philosopher to be appointed to the National Data Guardian’s (NDG) Panel, and in 2018 he joined the NDG’s Steering Group. Since then, he has represented NDG in national-level meetings, and occasionally at Ministerial-level meetings.  

His research on the concept of reasonable expectations shaped NDG’s introduction of a new Caldicott Principle in 2020 on informing giving, which now applies across the NHS.  

In 2020, Professor Wilson was a member of the Ethics Advisory Board (EAB) for the NHS Covid-19 App. His advice significantly influenced NDG’s decision to endorse the App, which had been downloaded over 20 million times by the end of 2020.  

Research synopsis

Shaping NHS policy on confidential patient data through ethics advice 

James Wilson’s research has been instrumental in maintaining trust in the use of confidential patient information in the NHS. It has led to changes in the way that core concepts such as confidentiality, implied consent, and public interest are interpreted by healthcare professionals, national-level committees, and the National Data Guardian.  

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