Research and analysis

LEICSS privacy notice

Updated 2 December 2024

Applies to England

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This publication is available at https://www.gov.uk/government/publications/lead-exposure-in-children-surveillance-reports-from-2021/leicss-privacy-notice

The purpose of the UKHSA’s Lead Exposure in Children Surveillance System (LEICSS) is to help track and investigate incidence, prevalence, trends, and the distribution of lead exposure in children under 16 years old in England to help inform prevention strategies and intervention programmes.

This privacy notice explains the personal information that is collected, how it is used and who it may be shared with for these purposes and explains the rights of data subjects under the relevant legislation.

LEICSS collects information relating to children who have an elevated blood lead concentration of more than 0.24 µmol/L. This data is received from local health protection teams, from LEICSS-participating laboratories and from internal UKHSA databases. The data is then uploaded to the Environmental Public Health Surveillance System (EPHSS) for selected, approved public health users to extract and produce surveillance reports. Information relating to identifiable individuals is removed before the data is analysed. However, the postcode of cases is retained in order to map spatial distribution and trends in cases.

A data sharing agreement is agreed and signed with all participating laboratories for reporting case information to this surveillance programme.

UKHSA also collects information from other organisations if this is necessary and proportionate to enable its remit to be fulfilled.

The purposes for which information is collected

UKHSA uses information on cases of lead exposure in children under 16 years in order to:

  • identify trends and monitor the epidemiology of lead in children
  • produce routine surveillance reports that record rates of infection over time
  • initiate timely public health action for individual cases
  • help understand the risks and sources of Lead in children so that interventions can be targeted to reduce the spread of infection
  • manage clusters and outbreaks by supporting action of the UKHSA’s Environmental Hazards and Emergencies team and its health protection units.

Personal information on cases of lead exposure is protected in a range of ways.

It is stored on computer systems that are kept up-to-date and regularly tested to make sure they are secure and protected from viruses and hacking. If personal information is shared with other organisations, this is only ever done using secure computer systems or encrypted email.

Personal information collected can only be seen by staff who have been trained to protect the confidentiality of data subjects and understand the relevant legislation, that is: the Data Protection Act 2018 and the General Data Protection Regulation (GDPR). Strict controls are in place to make sure staff can see only the minimum amount of personal information they need to do their job.

For example, each individual data subject’s name and NHS number are replaced with a non-identifying phrase or number; also their date of birth is substituted by their age in years. No information that could identify any individual data subject is ever published by UKHSA.

Retention of records

UKHSA stores personal information on cases of lead exposure in the UK and that data will only be processed within the UK.

In accordance with the UKHSA Retention and Disposal Schedule, LEICSS data is covered by the Agency’s chemical, radiation or environmental hazard exposure policy and will not normally be retained for more than 20 years. However, given that the health outcomes of lead exposure are chronic (such as neurological, cardiovascular and renal disease), the data collected may be retained for a longer period to allow appropriate analyses to be conducted, and related actions to be informed, for the following reasons:

  1. The health “end-point” relevant to effects of lead exposure may develop only after many decades
  2. It may be necessary for exposure data to be retained for decades as part of a national public health surveillance system

The law on protecting personal information – the GDPR and the Data Protection Act 2018 – allows UKHSA to use people’s personal data for the public health purposes set out in this privacy notice.

The relevant sections of the GDPR and the Data Protection Act that apply are:

  • GDPR Article 6(1)(e) ‘exercise of official authority’
  • GDPR Article 9(2)(i) ‘public health’
  • DPA (2018) Schedule 1 Part 1 (3) ‘public health’

Further information - How to raise a concern

Information about data subjects’ rights, and further details of data protection arrangements at UKHSA, are available at: UKHSA general privacy notice.

If you would like to find out more about the LEICSS surveillance programme, contact: epht@ukhsa.gov.uk  

If you have any concerns about how personal information is used and protected by UKHSA, contact the UKHSA Data Protection Officer at dataprotectionofficer@ukhsa.gov.uk or write to:

Office of the Data Protection Officer
UKHSA, 5th Floor
10 South Colonnade
London
E14 5EA

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