Funding Body: CRUK
Project Investigator: Professor Peter Sasieni
Researchers from Queen Mary University of London have set up a study to look at whether women who suffer health problems or have riskier lifestyles are less likely to attend cervical cancer screening. The aim of the cervical cancer screening programme is to detect and treat precancerous lesions to avoid the development of cervical cancer. This results in cervical cancer being observed less frequently in women who have attended cervical screening. However it is not clear whether the low risk of being diagnosed with cervical cancer following a normal screening test is due to the screening test alone or whether it also reflects the possibility that those women who attend screening are healthier that those who do not, i.e. they are already at lower risk of cervical cancer than women who do not attend.
To explore whether this phenomenon exists and its magnitude the researchers have setup a record linkage study involving a sample of women who died between 1992 and 2012 and were aged 20-69 in 1992. These women will be compared to women (with a similar date of birth to the women who have died) selected at random from the cervical screening call/recall database. The researchers will not have access to names or full dates of birth/death for the women included in the study. They will know the year and cause of death and the year in which they had a cytology test but no other personal identifiers.
DATA PROCESSING AND PATIENT CONFIDENTIALITY
Queen Mary University of London will collect information about you for this study from NHS Digital, as well as the NHS Cervical Screening Programme. This information will include your month and year of birth and of death, cause of death and month and year of any cervical screening tests. We will use these data to help assess the effectiveness of the cervical screening programme.
As Data Controller, Queen Mary University of London (QMUL) is responsible for the collection, storage and processing of these data for the study. These data include the following potentially identifiable data, categorised under the General Data Protection Regulation (GDPR) as de-identified:
The level of data collected from NHS/public health bodies will only be de-identified before it is given to us at QMUL and will not be shared with any third parties. Only authorised staff at the Wolfson Institute of Preventive Medicine are able to access the data and only for specific purposes related to the study. The data is stored in a secure, restricted-access environment. The data will be retained until destruction at the end of the study archiving period, which will be in 2021.
The legal bases for processing this data are exemption from Section 251 of the NHS Act 2006, as well as Article 6(1)(e) ‘performance of a task carried out in the public interest’ and Article 9(2)(j) ‘public interest, scientific or historical research purposes or statistical purposes’ pursuant to the GDPR.
As a University we use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use potentially-identifiable information. This means that we will use your data in the ways needed to conduct and analyse the research study. To safeguard your rights, we have requested the minimum personally-identifiable information possible. Your rights to access, change or move your information are limited, because we as researchers have only received de-identified data and hence cannot identify any individual from it.
Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.
If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer (firstname.lastname@example.org) who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).
QMUL privacy notice can be found at: http://www.arcs.qmul.ac.uk/media/arcs/policyzone/Privacy-Notice-for-Research-Participants.pdf
The researchers hope to publish this research by the end of 2019. For more information on the study or if you would like to know the results once they are published contact Alejandra Castanon at email@example.com.