Terms of reference


The mandate for the Review arose from a recommendation by the Future Forum that ‘a review of the current information governance rules and of their application [be commissioned], to report during 2012. The aim of the review should be to ensure that there is an appropriate balance between the protection of patient information and the use and sharing of information to improve patient care.’

The Secretary of State accepted the recommendation and invited Dame Fiona Caldicott to select and lead an independent panel of experts to conduct the Review. The Review Panel is expected to report its recommendations to him in 2013.

Terms of Reference:

The Terms of Reference for the Review are to review

  • the current and future purposes for which patient and social care service user information may be used, in particular, as needed to fulfil the requirements of the Health and Social Care Act 2012
  • the information flows needed to support these purposes where they require information which may be identifiable
  • how the Government’s Open Data policy may be facilitated whilst protecting the confidentiality, privacy and security of personal information
  • when explicit consent for information sharing needs to be sought and recorded, and when may consent reliably be implied and objection/active dissent recorded
  • when should anonymised and pseudonymised data be used
  • when may statutory support or public interest be relied upon, and when should statutory support be sought
  • current guidance/requirements with regards to the publication of statistical analyses that are based on small numerator or denominator sizes
  • information governance education and training for staff to ensure that they have the confidence to share information appropriately
  • current information governance requirements and reporting for organisations, and to consider whether these remain appropriate both for the new and continuing organisational structures
  • current national information governance roles and responsibilities, and to consider how to ensure effective, system wide information governance, following implementation of the Health and Social Care Act 2012
  • what is currently communicated to patients, service users and the public about how their information is used, and what needs to be communicated in future
  • current safeguards and means of redress, and to consider whether they remain sufficient to provide assurance to the public both in terms of the duty of care and breaches of confidence
  • the potential for facilitation of patient and service user control over their personal data through technology.

The Review may not be able to address all of these issues in great depth and consequently may make recommendations proposing further investigation for some


The scope was agreed at the panel meeting on 12 July 2012, but the panel reserve the right to adjust the scope as they proceed further with the review.

20120712 Approved Scope

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