Using data in the NHS: the implications of the opt-out and GDPR

The King’s Fund | May 2018 | Using data in the NHS: the implications of the opt-out and GDPR

A new ‘long read’ from the King’s Fund focuses on the use of data in the NHS and considers the implications of opt-out and GDPR. It looks at the system for protecting patient data, how the way the NHS handles patient data is changing and the implications of these changes. The key messages are given below:


Key messages

  • Patient data is not only vital for managing an individual’s care, it also plays an important role in other ways: planning health services, improving diagnosis and treatment and evaluating the effectiveness of policy. These ‘secondary uses’ of data offer significant opportunities to improve care, especially if advances in technology and data analysis can be harnessed.
  • Public confidence in data-sharing has been tested by several high-profile breaches of data security and confidentiality, while the NHS is still recovering from the controversy associated with the programme. Nevertheless, the public trust NHS organisations to manage patient data, and there is strong support for data being shared to improve care and for further research.
  • Safeguards governing the secondary use of patient data have been strengthened in recent years and will be bolstered by the implementation of a new national data opt-out alongside the introduction of the General Data Protection Regulation (GDPR) on 25 May 2018.
  • These changes will not have any impact on depersonalised datasets, so most secondary analysis and research will be unaffected. However, analysis that relies on using confidential patient information – including some of the national patient surveys and specific efforts to evaluate NHS services and conduct research – may be affected.
  • The consequences will depend on opt-out rates. If large numbers of people opt out of allowing confidential patient information to be used for research, this could affect the quality and validity of the data on which this research depends, potentially undermining important work to improve services and treatments.
  • National policy has to keep a balance between responding to legitimate public concern about the security and confidentiality of data and enabling data to be shared and used by NHS organisations and third parties. It is also essential that NHS national bodies are transparent with the public about how patient data is used.
  • NHS England and NHS Digital must ensure that opt-out levels are kept under review and put in place a long-term plan to promote the benefits of NHS organisations and third parties being able to access and use patient data. At the same time, NHS organisations must ensure they are beyond reproach in the way they use patient data (The King’s Fund).

The article can be read in full at The King’s Fund



NHS England NHS launches public campaign to highlight new stronger protections around health and care information

NHS England Managing the Friends and Family Test (FFT) in line with GDPR

House of Commons Library Patient health records and confidentiality


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