Privacy Notice
Privacy notice for research study Increasing cervical cancer screening uptake in Yorkshire: Testing the effectiveness of a behaviour change intervention in deprived and non-deprived populations.
- Purpose of this statement
This privacy notice is to provide you with details of the ways in which personal data will be used in the above study, including how it is gathered, used, stored and shared. Contact details are provided in case of any queries regarding the privacy notice, or in case of any concerns with the current management of your data.
2. What are the objectives of the research and the purpose of using your data?
The University of Leeds is acting as the study sponsor for the study. The aim of the study is to compare cervical screening uptake in a random sample of people who are due to receive an invitation to take part in cervical screening the week commencing 29th November 2021. Some people will receive some extra information about cervical cancer screening with the study information sheet. They may also receive a plan to go for screening which can be filled in.
Further information about the study has been provided alongside this privacy notice and all participants invited to take part will receive a patient information sheet, detailing what is involved in the study. However, as the study involves processing of data before potential participants receive this sheet, we are providing the opportunity for any potential participants to opt out after reading this privacy notice.
3. What data do we require?
On behalf of the University of Leeds, NHS Digital and the mailing service used by NHS national cervical screening service (Capita Intelligent Communications) will process the following data on participants: Name, address and NHS number. NHS Digital will also process data on participants’ date of birth and whether or not cervical cancer screening has been attended 16 weeks after the study takes place.
Public Health England are the controller for data on cervical cancer screening and will provide the data (via the data processor: NHS Digital) on names and addresses of people eligible for cervical cancer screening on the specific days of the study. Public Health England will also provide data on how many people invited to take part in the study attended screening and will provide a trusted third-party linkage service for the researchers.
We as researchers will receive data about whether participants have attended for screening, their age and what the area they live in is like. We will not be able to identify any participants using this information.
4. What is our legal basis for processing your data?
Under the Data Protection Laws, the University of Leeds has to identify a legal basis for processing personal data and, where appropriate, an additional condition for processing special category data. This study is classified as being carried out under Article 6(1) (e): public task (in the public interest) of the General Data Protection Regulations (GDPR). Special category (cervical screening uptake) data is processed under Article 9, section (j): Archiving, research and statistics.
5. Who do we share your data with?
Permitted employees of the University of Leeds working on the research project will use the data. Information will be pseudonymised and treated as confidential and shared on a need-to-know basis only. Data will not be shared with any third parties.
6. How will we keep your data secure?
All of the organisations involved in this research (The University of Leeds; NHS Digital; the cervical cancer screening mailing service) have implemented appropriate technical and organisational measures to protect personal data. Access to information is restricted on a need-to-know basis and the University is committed to the principle of data protection by design and default.
7. Will we transfer your data internationally?
No. Data will not leave the UK.
8. Will we identify you in any research outputs?
No. The data we hold does not allow us to identify individuals
9. How long will we keep your data?
The University of Leeds will destroy the data upon publication of the project outcomes or five years following receipt of the data, whichever the sooner. At the end of this time, the data will be destroyed safely and in accordance with the Data Protection Laws.
10. What rights do you have in relation to your data?
Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you have withdrawn from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally identifiable information possible.
If you know that you are eligible to take part in cervical cancer screening and do not want to have your data processed or to take part in the study, please contact NHS Digital and ask to opt out of the “NHAIS Cervical Yorkshire Study” before 01/12/21.
If you have any concerns about the way your personal data is being processed, you may also contact the University of Leeds Data Protection Officer using any of the following details:
Email: DPO@leeds.ac.uk; Postal address for data protection issues: University of Leeds, Room 11.72 EC Stoner Building, Leeds, LS2 9JT; Telephone number: +44 (0)113 243 1751.
11. Right to complain
If you are unhappy with the way in which your personal data has been handled, you have a right to complain to the Information Commissioner’s Office. For information on reporting a concern to the
Information Commissioner’s Office, see www.ico.org.uk/concerns
