Shaping NHS policy on confidential patient data through ethics advice

Professor James Wilson’s research has been influential in maintaining trust in the use of confidential patient information in the NHS.

Watch UCL Arts & Humanities and REF 2021: Professor James Wilson and Shaping NHS Policy on Patient Data on YouTube.
Professor James Wilson’s research-based ethical advice has been instrumental in maintaining trust in the use of confidential patient information in the NHS, contributing materially to: 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 misuse of patient data for immigration control purposes (2018); and the adoption across the NHS of a new Caldicott Principle for the use of data (2020). 
In 2020, Wilson was a member of the Ethics Advisory Board (EAB) for the NHS Covid-19 App. The EAB Chair confirms that “Wilson was the most influential member in crafting the ethical principles that we established”, and explicitly acknowledges how Wilson’s research on public value and on public health ethics shaped the EAB principles. Wilson’s advice “significantly influenced” NDG’s decision to endorse the App, which had been downloaded over 20 million times by the end of 2020.  

In 2015 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 Wilson’s contribution was “consistently valuable”, bringing “increased rigour”, and “greater attention to the achievement of public benefits”, which “improved the protection of the confidentiality and privacy of millions of NHS patients’ records, without detriment to services.” 

In 2016, he was chosen as “a leading academic in the ethics of data sharing” 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 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.” 

In 2016, 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. As NDG relates, she “soon came to recognise that we had made an excellent decision in deciding, in general, to have an academic ethicist and philosopher on the panel and specifically, to recruit Wilson, due to the contributions that he has made individually”. 

Learn more

REF 2021 News