UK Participants in the UK Atmospheric Nuclear Weapons Test (NWTPS)

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 Nuclear Weapons Test Participants Study (NWTPS)

In 1983, scientists from the National Radiological Protection Board (NRPB) were funded by the Ministry of Defence (MoD) to carry out an independent epidemiological study of participants in the UK atmospheric nuclear weapons tests, both in the Pacific and in Australia, in the 1950’s and 60’s. NWTPS is a long-term follow-up study of the health of UK personnel who were present at UK atmospheric tests conducted between 1952 and 1967.

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 NRPB had expertise in statistical research of radiation-exposed populations and an interest in furthering the knowledge of health effects of human exposure to radiation.

The aim of the study is to determine if servicemen who attended the tests subsequently experienced a higher incidence of cancer or mortality from cancer or other diseases that could be attributed to their involvement with the tests rather than from other causes. Thus the study provides information to the test veterans about how their health has changed since the tests compared to a similar group of servicemen and to the general population of the UK.

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).

NWTPS is to receive data under DARS-NIC-682587-K5N5K and DARS-NIC-148161-XXPS5. 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 identification 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 (to be obtained under DARS-NIC-148161-XXPS5) – necessary to better understand cohort population characteristics and to flag embarkations

• National Disease Registration Service (NDRS) cancer registration data (to be obtained under DARS-NIC-682587-K5N5K) – necessary to better understand the health outcomes of radiation workers.

The data requested are necessary to enable the study to compare health outcomes between the test participants and the control group and the general population to determine if rates differ between these groups and therefore whether men who attended the nuclear tests may have had different subsequent health experiences than the controls of the general population.

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 43,690 participants* of the NTWPS study. This cohort is static and will not change over time.

*The study population comprises two groups one contains 21,357 servicemen who were identified from MoD records as having attended one or more tests and a group of 22,333 controls who were servicemen who also served abroad at the same time as the tests but whose service was unconnected with the tests.

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 NWTPS 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 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 processor. UKHSA is an executive agency of the DHSC. UKHSA is responsible for the operation and management of the NWTPS 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 surveillance and statistical research. 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 1983, 1990, 1998 and 2017

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

• Demographics Data will be obtained from NHS England under a separate DSA (ref: DARS-NIC-148161-XXPS5);

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

The data are linked to the NWTPS cohort which was defined from archived military records and records of the Atomic Weapons Establishment at the start of the study in the mid-1980’s. They were used to confirm individuals test attendance (for the veterans) and to confirm suitability for being a control i.e. served overseas and not attending the tests. UKHSA extracted information on rank and service and radiation measurements on about 23% of the veteran's group.

Other than the datasets listed above, UKHSA do not link NHS England data to any other data.

To date, there have been four analyses of the NWTPS cohort. The first 3 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).

The fourth (published in 2022) and all subsequent analyses will be published only 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/nuclear-weapons-test-participants-study.

The outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

No further analyses are planned for the next five years. It is likely that one or more further analyses will take place when the vast majority of the cohort is deceased - this is expected to be in 2030. Surveillance is ongoing therefore UKHSA requires the latest available data prior to 2030 to enable this surveillance.

The aim of the study is to provide direct evidence and reassurance to the test participants as to whether, as a group, their health might have been affected by their participation in the test programme.

To date, the four major analyses undertaken to date did not reveal significant health issues among the test participants as compared to the controls.

Future analyses will be able to provide additional information about risks during participants' retirement years. Such analyses will also have greater statistical power compared to those already undertaken as a result of the much larger numbers of deaths and the longer follow-up period and so provide greater certainty. As occurred previously when an epidemiological analysis is undertaken the results will be provided to the main welfare organisation that looks after the interests of the veterans, the British Nuclear Test Veterans Association (BNTVA) so that the remaining veterans can be informed in the most appropriate way.

The BNTVA is the main veteran's organisation that was set up 40 years ago to provide support to veterans and advocate for them. There are no specific outputs that are undertaken in relation to or for the BNTVA. UKHSA provides support to the BNTVA in understanding the results of the work and its implications for the veterans but UKHSA does not provide specific results for them.

The Nuclear Weapons Test Participants Study (NWTPS) began in 1983 and is a long-term follow-up study of the health of UK personnel who were present at UK atmospheric tests conducted between 1952 and 1967. It provided high-quality evidence about the potential for long term health effects among the participants. To date, it has found no difference in the long-term health between test participants and a control group of servicemen who served at the same time in similar locations.

To date, four analyses have been published in the peer-reviewed scientific literature. The Ministry of Defence uses the evidence provided by this study when addressing veterans' concerns regarding their health, for example, when considering the awarding of War pensions.

Follow-up of the cohort is expected to be compete around 2032, at which time a final analysis will be performed.