National Registry for Radiation Workers

The UK Health Security Authority (UKHSA), an executive agency of the Department of Health and Social Care (DHSC) requires access to NHS England data for the purpose of the National Registry for Radiation Workers (NRRW).

The National Registry for Radiation Workers (NRRW) was established in 1975 by the National Radiological Protection Board (NRPB) as an epidemiological study of the mortality of those exposed to ionising radiation in the course of their work. It was later expanded to include the study of cancer incidence. NRPB became part of the Health Protection Agency which itself became part of Public Health England (PHE). Following the dissolution of PHE in October 2021 the functions of NRPB were transferred to the UK Health Security Agency (UKHSA) which is now responsible for the study.

The aim of the NRRW study is to investigate the effects of long-term occupational exposure to radiation on the health of workers and assess whether radiation protection regulations and guidelines provide an adequate level of protection for UK radiation workers. The study is particularly interested in the mortality and morbidity from cancers, and mortality from all non-cancer related diseases.

The study hopes to achieve the aim identified by combining NHS England data with information about the cohort members' radiation doses to generate population-level dose-response models that provide evidence about the effects of radiation exposure on health.

This is a very long-term study that has been in operation for over 40 years to date. It is expected to continue to operate for approximately ten more years (i.e. at least 2033).

The National Registry for Radiation Workers is to receive data under DARS-NIC-682588-Z0V8G and DARS-NIC-148219-ZHB4Z. The former permits the release of National Disease Registration Service (NDRS) Cancer Registry data, while the latter permits the release of demographics data. Data disseminated under both agreements are used for identical purposes. The NDRS data were previously accessed internally within Public Health England (PHE) when they were the controller for the NDRS Data. Following the dissolution of PHE in October 2021 the function of the NDRS transferred to NHS Digital which merged into NHS England in February 2023.

The following NHS England data will be accessed:

• Demographics – necessary to better understand cohort population characteristics and to flag embarkations (to be obtained under DARS-NIC-148219-ZHB4Z)

• National Disease Registration Service (NDRS) cancer registration data – necessary to better understand the health outcomes of radiation workers.

Individual-level data are necessary.

The level of the data will be:

• Identifiable – necessary so that participants’ health can be linked to the specific test attendances and to measurements of radiation exposure they had received during the tests.

The data will be minimised as follows:

• Limited to a study cohort of past and present radiation workers employed by organisations that agreed to support the NRRW and who are individually monitored for radiation exposure

New radiation workers are continually added to the study as they begin radiation work for participating employers.

The lawful basis for processing personal data under the UK General Data Protection Regulation (GDPR) is:

Article 6(1) (e) - 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;

The lawful bases for processing special category data under the UK GDPR are:

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 or ensuring high standards of quality and safety of health care, and

Article 9(2)(j) - 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 data are processed for two different purposes: surveillance (Article 9(2)(i)) and statistical purposes (Article 9(2)(j)).

The study is in the interests of the public because it provides direct evidence used to help justify the radiation protection legislation that protects workers and the public from harm due to radiation exposure.

The funding is provided by the Ministry of Defence. The funding is specifically for the NRRW study described. Funding is currently in place until 31st March 2025 however is expected to be extended as it approaches its expiry date.

DHSC is the data controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.

The UK Health Security Agency (UKHSA) is a data processor. UKHSA is an executive agency of the DHSC. UKHSA is responsible for the operation and management of the NRRW study.

No other organisations are involved in the processing of the data under this Agreement. Any other organisations involved in the project are providers of the same data UKHSA seek under this Agreement but in the other constituent countries of the UK; National Records for Scotland, Public Health Wales and the Northern Irish cancer registry. In addition, data about employees who work with radiation are provided to the project by the employer organisations. UKHSA has separate data-sharing agreements with each employer.

The National Registry for Radiation Workers Governance Group (which includes workforce representatives) helped refine the purpose of the statistical research and surveillance.The group supported the collection of the data for the purposes described above while also considering the protection of participants' confidentiality.

The study database at UKHSA contains details of cohort members' names, dates of birth, and NHS numbers.

UKHSA will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Date of Birth, Postcode, Gender and a unique person ID) for the cohort to be linked with NHS England data.

NHS England data will provide the relevant records from the NDRS Cancer Registry to UKHSA. The data will contain directly identifying data items including Forename(s), Surname, NHS Number, Date of Birth and Postcode which are required to link the data at a record level with data already held by the recipient.

The data will not be transferred to any other location.

The data will be stored on servers at UKHSA.

The identifying details will be stored in a separate database (The National Radiation Epidemiology Database Management System NRED) to the linked dataset used for analysis. All analyses will use the pseudonymised dataset which is held on servers at UKHSA. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset.

The data will be accessed by authorised personnel via remote access.

Personnel are prohibited from downloading or copying data to local devices.

The data will not leave England at any time.

Access is restricted to employees or agents of UKHSA who have authorisation from the Principal Investigator, who will only permit the data to be processed for the purposes described above.

All personnel accessing the data have been appropriately trained in data protection and confidentiality.

Any external researcher requesting access to information in the study cohort (which may include linkage to other databases) will be required to seek a separate Data Sharing Agreement with NHS England for this purpose.

The study has been analysed four times to date. The results of these analyses were published in 1988, 1993, 2003 and 2022

The data will be linked at the person record level with:

• Demographics obtained from NHS England (ref: DARS-NIC-148219-ZHB4Z)

• Civil Registration Mortality data obtained from the Office for National Statistics (ONS);

• Employment data and information on radiation exposure (obtained from the Ministry of Defence followed by workers from sites formerly managed by British Nuclear Fuels Ltd (BNFL), workers employed by the UK atomic energy authority (UKAEA) and workers employed at UK nuclear power generation sites).

These datasets are linked to mortality data of which is obtained from the Office for National Statistics directly.

To date there have been four major analyses of the NRRW cohort. Summary papers detailing the results were published in the peer-reviewed scientific press and for each analysis a full report was published by the predecessor organisations to UKHSA (NRPB or Health Protection Agency (HPA) or PHE).

Analyses carried out during the era of PHE and now UKHSA has only been published as open-access papers in the peer-reviewed scientific press.

Access details for the papers (which are free to download) and layman's summaries and copies of the reports are available on www.gov.uk

https://www.gov.uk/government/publications/radiation-workers-and-their-health-national-study/nrrw-data-publications-by-study-team

Data for a fourth major analysis of the NRRW is planned to be extracted in Spring 2024. A range of papers detailing the results will be published in the peer-reviewed scientific press in the following several years.

The object of the work being carried out at this time is to improve the precision and accuracy of the estimates of disease risk from radiation exposure obtained previously from the study.

As the study collects more data, new analyses will produce estimates of risk that are closer to the true underlying but unknown risk (i.e. more accurate) and the uncertainty associated with the estimates will become smaller (i.e. more precise) and UKHSA also expect to see fewer statistically significant results occurring through random chance.

In addition, the extra data allows the detection of excess risks from smaller doses and more accurately predict the dose response relationship particularly at low doses.

The work currently being undertaken and planned for the future provide direct evidence to Public Health planners about the potential risks of radiation exposures to those occupationally exposed to radiation and to the public.

The work also provides emergency planners at UKHSA with information to enable planning for dealing with emergency situations where radiation exposure is involved. For example, how long term rates of cancer would be affected by a population wide radiation exposure.

In the next 3-5 years the results of a fourth major analysis of the NRRW cohort will be published with extended follow-up and based on an increased number of workers. The inclusion of thousands more cancer incidences and deaths among the cohort members will increase the precision of the estimates of risk derived from these data and thereby allow this work to further contribute direct evidence to the review of ionising radiation recommendations in the future and to continue to provide reassurance to radiation workers.

This work will contribute directly to the goal of the UKHSA to deliver health security to England and across the devolved nations.

This is a very long term epidemiological study (almost 50 years to date) that aims to provide evidence about the effects of occupational exposure to ionising radiation and exposure to the public.

To date, three sets of data have been extracted for analyses. Analysis of the third data drop is complete and the team will complete the 4th major analysis to begin by end of 2026. All scientific papers using data from the study are published open access and layman’s summaries are provided on the NRRW section of the .gov website.

In 2024 a new database system was completed and is now in use.