Privacy notice
Updated 5 August 2022
Applies to England
© Crown copyright 2022
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This publication is available at https://www.gov.uk/government/publications/enhanced-surveillance-of-childhood-cases-of-hepatitis-b-and-c-in-england/privacy-notice
About UKHSA
UK Health Security Agency (UKHSA) is responsible for planning, preventing and responding to external health threats, and providing intellectual, scientific and operational leadership at national and local level, as well as internationally. UKHSA will ensure the nation can respond quickly and at greater scale to deal with pandemics and future threats.
We collect and use personal information to fulfil our remit from the government. UKHSA’s responsibilities include monitoring cases and outbreaks of infectious diseases, such as childhood hepatitis B and C, to understand more about the disease and help reduce the risk of infection.
This privacy notice explains the personal information we collect on childhood cases of hepatitis B and C, how we use it and who we may share it with.
UKHSA is an executive agency of the government, sponsored by the Department Health and Social Care (DHSC). The DHSC is the data controller for the personal information we collect, store and use to fulfil our remit.
Further information about the personal data UKHSA collects and uses can be found in our general privacy notice.
The information we collect
The personal information we collect and use on children with hepatitis B and C includes:
- demographic information, such as name, date of birth, sex, ethnic group and postcode; we also collect information on the household contacts of infected children, including their vaccination and hepatitis infection status
- health information, such as results of diagnostic tests for hepatitis B and C, liver function and disease staging test results, and related health conditions and risk factors
- treatment information, for example, anti-viral medication prescriptions and vaccination history
How we collect the information
Personal information on childhood hepatitis B and C is collected by us from the providers of health and care services. Specifically, information on the diagnosis and treatment of cases of childhood hepatitis is obtained from GPs and specialist care units managing hepatitis infections. We also collect information from laboratories that process hepatitis test results.
To help protect public health, all doctors and laboratories in England are required to inform UKHSA of cases of certain infectious diseases, including childhood hepatitis B and C.
The purposes we use the information for
Information on cases of childhood hepatitis B and C infection is collected and used by us to:
- identify trends and monitor the epidemiology of hepatitis B and C to help understand the risks and sources of hepatitis B and C so that interventions can be targeted to reduce the spread of infection
- evaluate the effectiveness of the NHS vaccination programme for hepatitis B
- monitor access to and outcomes of care and treatment so that best clinical practice can be shared across the NHS, patient outcomes improved and health inequities addressed
The information we collect on childhood hepatitis B and C is held by us and linked to data on the treatment and health outcomes of infected children as they progress into adulthood. For example, we monitor over the long term for health conditions that are related to childhood hepatitis, such as cirrhosis or liver cancer diagnoses, that may occur later in life.
The results of our analyses are used to produce reports that we provide to NHS clinicians and health service commissioners. These reports aim to highlight differences in treatment choices, vaccination coverage levels and the longer term health outcomes of infected children. This information is used to help improve or change services to better suit the long term health care needs of children who are infected with hepatitis B and C.
Who we share the information with
We may share the personal information we collect on childhood cases of hepatitis B and C with clinicians who are providing individual care to affected children.
If we do share personal information, we will only do so where the law allows and we only share the minimum amount of information that is necessary.
We may also share personal information with university and other researchers. We only do so with researchers who have approval from a medical ethics committee and have obtained either patient consent or special permission from the Secretary of State for Health and Social Care or the Health Research Authority’s Confidentiality Advisory Group to use confidential information.
You can opt out of us sharing your information with researchers if you choose. Further information and details on how to register your opt-out choice is available.
How we protect the information
The personal information we collect and use on childhood hepatitis B and C is protected by us 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.
Personal information can only be seen by our staff who have been specially trained to protect confidentiality. Strict controls are in place to make sure they can only see the information they need to do their job, and they are only provided with access to the minimum necessary information.
Whenever possible, we only use your information in a form that does not directly identify individuals. No information that could identify any individual will ever be published by us.
Where we store the information
We store personal information on childhood hepatitis B and C in the UK and only in other countries, where necessary, if they are formally recognised by the UK government as providing legal protections over privacy at least equivalent to the those that apply here in the UK, such as the countries of the European Economic Area (EEA).
How long we keep the information
We will only keep personal information for as long as we need it to protect public health or as otherwise required by law.
Hepatitis B and C are long-term conditions that can affect the health of infected people across their lifetime. For example, the average time between infection and some outcomes such as cirrhosis or liver cancer can be up to 30 or 40 years. So that we can monitor these longer term health impacts and use this information to improve the services provided to prevent and treat hepatitis B and C, we keep the personal information of infected individuals for their lifetime.
At the end of their life, we remove information that directly identifies affected individuals, such as their name and NHS number with pseudonyms (a non-identifying phrase or number that replaces the personal information) and substitute date of birth with age in years to help protect patient confidentiality.
Your rights over your information
Under data protection law, you have several rights over your personal information. You can find out more about these rights in the UKHSA general privacy notice.
Our legal basis to use the information
Our legal basis to collect and use personal information to monitor cases of childhood hepatitis B and C is provided by the following sections of the UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 2018:
- UK GDPR Article 6(1)(e) ‘processing is necessary for the performance of a task carried out in the public interest’
- UK GDPR Article 9(2)(i) ‘processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health’
- Data Protection Act Schedule 1 Part 1 (3) ‘public health’
UKHSA’s remit to fulfil the statutory duty of the Secretary of State for Health and Social Care to protect public health from disease or other dangers to health means that the parts of the law that provide UKHSA with this authority are section 2A of the NHS Act 2006, as amended by section 11 of the Health and Social Care Act 2012, and the Health Protection (Notification) Regulations 2010.
Our duty of confidentiality
To fulfil our remit, we may need to use confidential information without asking for the consent of patients. We have ‘section 251’ approval from the Secretary of State for Health and Social Care to do this for the purposes of diagnosing, recognising trends, controlling and preventing, and monitoring and managing communicable diseases and other risks to public health. This includes monitoring childhood cases of hepatitis B and C.
The part of the law that applies here is section 251 of the National Health Service Act 2006 and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002.
How to find out more or raise a concern
If you have any concerns about how UKHSA uses and protects your personal information, you can contact the Department of Health and Social Care’s Data Protection Officer at [email protected] or by writing to:
Office of the Data Protection Officer
Department of Health and Social Care
1st Floor North
39 Victoria Street
London SW1H 0EU
You also have the right to contact the Information Commissioner’s Office if you have any concerns about how we use and protect personal information. You can do so by calling the ICO’s helpline on 0303 123 1113, visiting the ICO’s website or writing to the ICO at:
Customer Contact
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
SK9 5AF
About this privacy information
The personal information we collect and use on cases of childhood hepatitis B and C may change so we may need to revise this notice. If we do, the publication date provided below will change.