Transparency notice

The BOOST Study uses information from health, education and related records. We take privacy seriously and ensure all data is handled securely.

This transparency notice describes the BOOST Study and how we use patient information. It also describes how to get further information about the study and what to do if you want to opt out of your or your child’s personal information being used.

BOOST uses coded and anonymised data from three sources:

  1. Information that is routinely collected from the NHS newborn hearing screening programme which has been linked to NHS hospital admission records for children screened after 01 April 2006. This information has been linked by NHS England using personal identifiers and is held in the UCL Data Safe Haven which is a secure data environment.
  2. Information that is routinely collected from NHS hospitals, state schools, and children’s social care services in England for children born on or after 1st September 1984 (this is known as ECHILD). This information has been linked by NHS England using personal identifiers and is held in the Office for National Statistics in a secure data environment.
  3. Information from the Millennium Cohort Study that has been linked to NHS hospital records and state school records. This information has been linked using personal identifiers and is held in the UK Data Service SecureLab which is a secure data environment.

The UCL researchers using this information for BOOST do not have access to personal information that could identify individual children. The personal identifiers (such as name and postcode of residence) have been removed before information was provided to the researchers. The data is de-identified (or anonymised). The researchers are not allowed to identify individuals under any circumstances.

The researchers will access the data in the secure data environments.

The data will be used for research that has a clear public benefit to improve the health and well-being of deaf children and young people accessing health, education, and social care services. 

For example:

  • to inform and improve prevention strategies such as newborn screening
  • to inform and improve the timing and targeting of interventions for deaf children
  • to find out about variation in special educational needs support and outcomes for deaf children
  • to inform education and clinical practice, for example by finding out if higher school absence rates lead to deaf children lagging behind their peers. This information would help to guide policies to reduce school absences for deaf children.
  • to identify subgroups who could benefit from intervention and reduce inequalities
  • to understand how routine screening data can be used to monitor and improve the screening programme.

There are safeguards to make sure that publications from the BOOST study will not identify any individuals. 

The lawful basis for using information collected routinely for administrative purposes for research is the ‘public task.’ This is part of the UCL’s commitment to ‘integrate education, research, innovation and enterprise for the long-term benefit of humanity.’ The public task basis is in Article 6(1)(e) of the General Data Protection Regulation, which states:
‘Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.’

For special category data, the lawful basis for using the information is ‘Archiving, research and statistics’ in Article 9(2)(j) of the General Data Protection Regulation, which states:

‘Processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.’

The information will be held by the BOOST Study until the end of June 2028. 

Records held by the BOOST Study are de-identified. This means researchers are not able to identify which records may belong to you. Because of this, it is not possible to grant usual data protection rights or provide access to your data, and automated decision-making (including profiling) is not applicable. 

However, NHS England is providing and linking patient records so can uphold some of your rights, such as your right to request access to your data, rectify your data, or restrict the processing of your data. You can find out more about this in the NHS England privacy notice.

You have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare.  Please visit NHS's website for further details of how the NHS uses your information and how to opt out: https://digital.nhs.uk/your-data. 

You can also find out more about your rights in the Data Protection Act 2018.

You also have the right to complain to the Information Commissioner’s Office.

You can contact the research team:

BOOST Study

c/o Rachel Knowles and Leah Li

UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London
WC1N 1EH

Email: rachel.knowles@ucl.ac.uk or leah.li@ucl.ac.uk 

You may also contact the UCL Data Protection Officer:

University College London
Legal Services, 6th Floor
1-19 Torrington Place
London
WC1E 7HB

Email: data-protection@ucl.ac.uk