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Asbestos Workers Survey

What is the Asbestos Workers Survey?

The Asbestos Workers Survey is a health surveillance study which was established by the Health and Safety Executive (HSE) in 1971. The main aim of the Asbestos Workers Survey is to monitor the long-term health of the survey participants in order to evaluate the effectiveness of progressively restrictive regulations to control the risks associated with exposure to asbestos. The findings from the survey form part of the evidence used to inform future decisions.

 

How do asbestos workers become part of the survey?

The survey began by inviting men and women who worked at premises covered by the 1969 Asbestos Regulations to attend a medical examination. During this medical, they were also invited to take part in the Asbestos Workers Survey. If they agreed to participate they completed the survey questionnaire which was sent to HSE for processing.

The 1983 Asbestos Licensing Regulations required those who worked with asbestos insulation or asbestos coating to be licensed, and the 1987 Control of Asbestos Regulations extended the requirement for licensing to all workers exposed to asbestos above a specified action level, regardless of the type of work they did. These regulations introduced statutory medical examinations for all licensed workers. When they attended these medicals, the licensed workers were also invited to enrol in the Asbestos Workers Survey.

Men and women are still being enrolled into the survey to this day, although now they are being enrolled under the 2012 Control of Asbestos Regulations which superseded all previous regulations. So far, more than 100,000 asbestos workers have agreed to take part in the survey.

The information from the medical examination is kept confidentially by the examining doctor; only the information on the survey questionnaire completed by each participant is sent to HSE Buxton for processing.

A copy of the current version of the survey questionnaire and accompanying documents, including details of the survey, are available here (PDF, 239 kB).

 

How do we collect information about the survey participants' health?

When a licensed asbestos worker agrees to take part in the Asbestos Workers Survey, they are asked to complete the survey questionnaire. This includes questions about current and past work with asbestos, and about smoking history.

Exposure to asbestos can increase the risk of developing asbestosis, mesothelioma and lung cancer, as well as other benign pleural disease. The simplest way to obtain information on these important health outcomes without creating a burden for participants is to apply to NHS Digital (England and Wales) or National Records of Scotland (NRS).

Survey participants are 'flagged' with NHS Digital or NRS so that they can notify the survey team of any cancers or death registrations among the survey participants. Everyone who agreed to take part in the survey has been 'flagged' in this way with these central databases.

Personal information provided by the survey participants is used to link the survey data with the NHS central databases. The personal information used to create the link comprises: study ID, name, address, sex, date of birth and NHS number (if available). NHS Digital provides the survey team with cancer data on behalf of Public Health England, and mortality data on behalf of the Office for National Statistics. NHS Digital and NRS send the survey team information on the date of the event and the cancer type or cause of death. They also inform the survey team if a survey participant has emigrated. In this way, the survey team can follow up the long term health status of survey participants.

 

How do we use the survey participants' data?

The data collected by the study are used for health research purposes only and are kept strictly confidential.

The data will be used to compare ill-health and mortality among the asbestos workers with the general population, and to examine differences between groups of workers within the survey population.

The study findings will be freely available online in Health and Safety Executive Research Reports and other published articles. The findings will be reported in such a way that no individual is identifiable. The  Research Reports describing the findings from the study are freely available on HSE's website. The findings will be used to inform future policy.

As a government agency we use personally-identifiable information to conduct research to improve workers' health. As a publicly-funded organisation, we must ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when they agree to take part in a research study, we will use their data in the ways needed to conduct and analyse the research study. Their rights to access, change or move their information are limited, as we need to manage their information in specific ways for the research to be reliable and accurate. If a participant withdraws from the study, we will keep the information about them that we have already obtained. To safeguard their rights, we will use the minimum personally-identifiable information possible.

Health information is sensitive personal data and is regarded as special category data. Your sensitive personal data will be processed for research purposes only.

If a participant wishes to raise a complaint on how we have handled their personal data, they can contact our Data Protection Officer who will investigate the matter. If they are not satisfied with our response or believe we are processing their personal data in a way that is not lawful they can complain to the Information Commissioner's Office (ICO). They can contact our Data Protection Officer by email at DPO@hse.gov.uk, or they can write to us at the following address:

Data Protection Officer,
Health and Safety Executive,
1.3 Redgrave Court,
Merton Road,
Bootle,
Liverpool L20 7HS.

More information on how HSE processes data is provided in HSE's Privacy Policy Statement.

 

What if a participant changes their mind?

If someone agrees to take part in the survey, they can ask to withdraw from the survey at any point in the future using the contact information given at the foot of this page. However, the survey team will keep the information collected up to the time they withdraw from the survey. This is because the information will already be part of earlier analyses and published statistics. These reports do not contain any identifiable data and it is not possible to remove individual data from them.

 

How long will the survey last?

 

The Asbestos Workers Survey is a long-term survey and currently HSE has not set an end date for it. The data collected will be stored securely for 15 years after the end of the survey. Retaining the data for this period ensures that any findings are traceable for a reasonable time after publication.

 

How is the survey funded?

The Asbestos Workers Survey is funded by the Health and Safety Executive.

 

Contacts

If you have any questions at all about the research, please contact the survey team:

Asbestos Workers Survey
Health and Safety Executive
Harpur Hill
Buxton
Derbyshire
SK17 9JN

 

E: asbestos.workers@hse.gov.uk

 

Or via the website Contact Form.

 

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