3.1 Person demographics (page 19 of 32) in 3 Section specific guidance (chapter 4 of 8) within Core Information Standard: Implementation Guidance

This section contains the person’s demographic and contact details including key identifiers (e.g. name, date of birth, sex at birth, NHS number, address etc. It also includes a person’s gender identity and pronouns, where stated.

• NHS number (or equivalent, e.g. CHI number in Scotland), is likely to be the primary identifier however existing national guidance should be followed, including how to handle patients without an NHS number, for example, overseas visitors.
• The PDS (Personal Demographics Service) should be used as the source of this information. The mandatory information in this section is person’s name, date of birth, sex at birth and address. There can be multiple addresses associated with a person including temporary and correspondence addresses.
• To improve the accuracy of the organ and tissue donation element systems should link directly to the organ donation register where possible.

3.1.1. Sex and Gender

• Sex at birth (observed): The phenotypic sex of the person. This is as observed by clinical examination and assessment at birth. Where there is no health and care record from birth, and clinical examination and assessment is not possible, this can be stated by the person or proxy.

• Administrative gender: This is the ‘Person Administrative Gender’ held on the Personal Demographics Service (PDS).

  • This is a legacy data item for England only to represent the data held on the Personal Demographics Service (PDS). NHS England is reviewing the data items in PDS so this will be replaced.
  • This data item should be read-only.
  • In the majority of cases ‘Administrative gender’ and ‘Sex at birth (observed)’ would be the same. However, in some cases displaying both ‘Administrative gender’ and ‘Sex at birth (observed)’ would mean that transgender status could be inferred. Implementers should seek information governance advice on when and to whom access can be given to a person’s record (or specific data within a person’s record) where information in the record indicates transgender, non-binary or gender diverse status.

• Gender identity: The person's stated gender identity.

  • Gender identity should ONLY be recorded if a person has a gender identity and wants it recorded in their healthcare record and a clinician decides it is appropriate to record it. If gender identity has been recorded it should be shared.
  • The term ‘gender identity’ refers to some people’s sense that they identify as a member of the male or female sex or as neither (or something else), particularly when this identity is different from their sex at birth. It refers to how individuals understand themselves. Gender identity is always expressed by the person themselves.
  • This is a legacy value set. NHS England is reviewing the value sets so this will change.
  • Displaying both ‘Gender identity’ and ‘Sex at birth (observed)’ would mean that transgender status could be inferred. Implementers should seek information governance advice on when and to whom access can be given to a person’s record (or specific data within a person’s record) where information in the record indicates transgender, non-binary or gender diverse status.
  • Additional information about gender identity: Any additional information stated by the person about their gender identity.
  • Information about gender identity should ONLY be recorded if a person has a gender identity and wants additional information about it recorded in their healthcare record and a clinician decides it is appropriate to record it.
  • If additional information about a person’s gender identity has been recorded it should be shared.

• Pronouns: The person's stated pronouns.

  • Pronouns should ONLY be recorded if a person wants their pronouns recorded in their healthcare record and a clinician decides it is appropriate to record them.
  • If pronouns have been recorded they should be shared.