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Control of Asbestos Regulations which superseded all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.
This study does not use automated decision-making or profiling to
make decisions about individuals.
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
Email: asbestos.workers@hse.gov.uk
Or via the website Contact Form.