Legally unsharable clinical codes

Closed 19 Jan 2018

Opened 20 Nov 2017


NHS Digital is an arms-length body of the Department of Health; we are the national provider of information, data and IT systems for commissioners, analysts and clinicians in health and social care. As part of our role we must ensure that we are fully compliant with all relevant legislation and directions and that we only ever use data lawfully.

Interactions between individuals and the health care system are recorded using a set of clinical codes. These are used for, amongst other reasons, to facilitate an effective patient journey, allow providers to be paid for treatments and to provide management information to allow the correct allocation of resources, etc.

For example:

When legally restricted (formerly known as ‘sensitive’) codes are contained in provider submitted data, Secondary Uses Services (SUS) data is stored with no personal identifiers and so can only be shared without those identifiers.  Data items such as NHS Number, provider spell number, date of birth and postcode are all removed from the data in order to prevent re-identification of the individual concerned. 

For other non-sensitive cases, these items are used to validate hospital data and ensure that the correct CCG is billed for healthcare activity. The data is also used to tie different hospital events together to help support investigation of adverse outcomes such as re-admissions or re-treatments, and to support further epidemiological studies.

NHS Digital is currently undertaking a review of the codes that are defined as sensitive (legally restricted) in order to ensure that our use of provider data is compliant with the Human Fertilisation and Embryology Act 1990 (as amended by the Human Fertilisation and Embryology Act 2008) and the Gender Recognition Act 2004 (as amended by The Gender Recognition (Disclosure of Information) (England, Wales and Northern Ireland) Order 2005).

Information can always be shared to facilitate the ongoing care of a patient, the Acts make it illegal to share information for any other purposes.

In addition, this work will also ensure that we are compliant with the latest legal position on the sharing of data in respect of sexually transmitted infections (STIs).

There are legal requirements set by the NHS Trusts and Primary Care Trusts (Sexually Transmitted Diseases) Directions 2000 which require that every NHS trust and Primary Care Trust shall take all necessary steps to secure that any information capable of identifying an individual obtained by any of their members or employees with respect to persons examined or treated for any sexually transmitted infection shall not be disclosed except in certain circumstances.

We are conscious that following the Health and Social Care Act 2012 these Directions apply only to the few remaining NHS hospital trusts and they do not apply to NHS Foundation Trusts or the wider range of services that now provide STI testing and treatment.

The 2000 Directions will cease to have effect once the remaining trusts become Foundation Trusts. However, the Department of Health policy remains unchanged in that people should continue to use the sexual health services with assurance that information on STI testing, diagnosis and treatment will be not be included in their shared patient records without their consent.

Therefore as part of this consultation associated restricted codes relating to sexual health services have been included.

Why We Are Consulting

NHS Digital has completed a piece of work to identify a list of codes – the Legally Unsharable List - which could potentially identify an individual as being part of the Gender Reassignment process, having been part of the IVF process or any investigation or treatment for STIs. The codes that have been identified will continue to be used for secondary purposes, but all related information that could potentially identify an individual would be removed where the codes are used for any other reason apart from direct care.

The list of codes has been reviewed by an expert reference group including Information Governance specialists and clinicians from

  • NHS Digital
  • NHS England
  • Public Health England
  • Office for National Statistics.

NHS Digital wants your feedback on this list of clinical codes to find out if you think:

  • have we missed anything – any clinical treatments, investigations or findings?
  • the codes are appropriate and relevant – have we included any clinical treatments, investigations or findings that are not relevant to the areas covered?
  • there is likely to be any impact on future clinical studies, or impact upon the quality of the data that is held by NHS Digital?

Your feedback will be used to finalise this list which will be then available for use across the health care system and within national data sets.


  • All Areas


  • Clinicians
  • Patients
  • All Users of National Data Sets


  • Information Governance
  • Confidential Information
  • Information Sharing
  • Clinical Coding