LAPCD Privacy notice, version 2.0 12th July 2021
Privacy Notice for the Life After Prostate Cancer Diagnosis (LAPCD) Study
What is the purpose of this document?
This Privacy Notice describes how the LAPCD study uses and stores data. It is intended to demonstrate how we comply with the General Data Protection Regulation (GDPR) of 2018. It describes how we collect data and use any personal data within it, so you are aware of how and why we are using your information. The notice may be updated at any time.
Glossary
The term ‘personal data’ when used in this document means any recorded information that is about you and from which you can be identified. It does not include data where your identity has been removed. These are anonymous data.
The term ‘processing’ of your personal data means anything that is done with that information including collecting, use, storage, disclosure or retention.
What is the purpose of the LAPCD study?
The LAPCD study is investigating the quality of life of men living with and beyond prostate cancer across the UK. We are carrying out this research to find out more about the quality of life of men who have been diagnosed with and treated for prostate cancer, and to understand the impact of prostate cancer on their lives and their partners/spouses.
The LAPCD study is being carried out jointy by the University of Leeds, Queens University Belfast, Oxford Brookes University and the University of Southampton. The University of Leeds is the study sponsor and the data controller.
What types of data does the LAPCD study process?
The LAPCD study will involve surveys of men diagnosed with prostate cancer and interviews with a subset of men who complete the survey (and their partners/spouces). The processes involved are set out below:
1. Surveys of men diagnosed with prostate cancer
This study will carry out three surveys of men with prostate cancer living in England, Scotland, Wales and Northern Ireland
A list of eligible men will be identified through cancer registration systems in England, Wales and Northern Ireland, and through hospital activity data in Scotland.
This data will be sent to Picker Institute Europe, an NHS approved survey provider (referred to here as a data processor). Before any surveys are sent out, death checks and address checks will be carried out and any patients who have registered a type 2 objection will be removed. This will involve sharing data with NHS Digital (for England and Wales), Scottish NHS Central Register and Community Health Index database (for Scotland) and Business Services Organisation (for Northern Ireland). The refined list of patients who have not registered a type 2 objection and are not deceased, along with up-to-date addresses will be provided back to Picker Institute Europe. This data will allow Picker Institute Europe to send our the surveys. In Northern Ireland, data cannot be shared with a survey provider and the surveys will be sent out by the Northern Ireland Cancer Registry.
Participants may complete the surveys via post, telephone or online. The surveys will not ask for personal details such as names and addresses and each survey will include a unique study ID number. When participants complete their survey and send it back to Picker Institute Europe, this will be considered as consent to take part in the study. Picker Institute Europe will remove any personal information from the surveys that may identify participants.
Survey response data will be shared with the cancer registry within each nation. This data will be shared for the purpose of linking to patient’s disease and treatment information contained within cancer registration records, medical records and NHS databases. Cancer registries have access to identifiable data, but this will not be made available to the study team.
The linked survey response data and disease and treatment information will be sent to the study team for analysis. This will be de-identified and will only include the unique study ID number. It will not include identifiable patient information. This means that details such as name, NHS number and address will be removed.
2. Interviews with men diagnosed with prostate cancer
We will carry out telephone interviews with a group of men who respond to the surveys. On the final page of the survey there will be a tick box for men to indicate if they wish to be contacted for an interview. Not all men who tick the box will be contacted.
Interviews will be carried out by members of the study team from the University of Southampton and Oxford Brookes University. Using a sampling framework, Picker Institute Europe will randomly select men who have agreed to be interviewed and send the names and addresses of the selected men to the study team. The study team will then invite men to take part in an interview.
Verbal consent to participate in the study and for audio-recording of the interview will be obtained. Two separate recordings will be made, one for consent, the other for the interview. Researchers will ensure that interview recordings are anonymised by deleting any identifiable information that interviewees may have disclosed. The recordings will be transcribed verbatim by professional transcribers who have signed confidentiality agreements with either the University of Southampton or Oxford Brookes University. The anonymised transcripts will be used for analysis.
How will data be stored?
The completed surveys and digital scans of these will be securely stored by Picker Institute Europe. These will contain a unique study ID and no other identifiable information.
The anonymised survey data and linked patient and disease information will be stored at the University of Leeds and Queens University Belfast.
At the University of Leeds, Microsoft Ireland Operations Limited is the data processor providing cloud storage services. The University of Leeds instruct Microsoft to securely store all data in the Microsoft Azure (Cloud) UK data centres in the UK region only. Microsoft will not process this data outside of the UK and/or the EEA, without the explicit instruction of the University of Leeds.
At Queens University Belfast, data will be stored within the secure system of the Northern Ireland Cancer Registry.
The interview data will be stored at the University of Southampton and Oxford Brookes University.
Electronic transcripts of the interviews will be stored securely in an anonymised form with unique IDs linking to the personal information in a separate database. The original consent and interview audio files will be securely deleted at the end of the study.
The legal basis for processing data
LAPCD study data are gathered and processed (including your special category sensitive data) in this way for the purpose of performing scientific (medical) research being carried out in the public interest. This is known under data protection law as our “legal basis” for processing personal data. The LAPCD study only processes your personal data for these purposes.
Please note that we may process your data without your knowledge or consent, in compliance with the above rules, where this is required or permitted by law.
How can participants opt out of the study?
Patients who have registered a type 2 objection prior to the start date for the work will not be contacted as part of this work. Patients who receive a survey but who wish to opt out of the study will be instructed to contact the survey provider, Picker Institute Europe, on the Freephone helpline number 0808 801 0678.
You can pull out of the study at any time without giving a reason. If you pull out, it will not affect your rights and will not affect your current or future treatments in any way.
If you do not want us to use your information, we can remove it for up to 6 months following the completion of the questionnaire. We cannot remove information that you have provided after this time, as the research team will have started using this information for analysis and reporting.
Who has access to your data?
Access to your personal data is limited to a small number of people within a strictly controlled data environment. All these individuals have undergone special training in handling confidential data and the data systems they use are highly secure.
Data Retention
The survey provider, Picker Institute Europe, will destroy your personal details once each survey has closed. The completed paper and online questionnaires will be stored securely for 15 years after the study has ended.
Data held by the study team will be stored securely for 15 years after the study has ended.
Your survey responses will be stored as part of the patient cancer record by the cancer registry within each nation under the strict data handling rules for patient identifiable information.
Reporting plans
The results from the LAPCD study will be made available to patients, their partners/spouses/carers, the funders, NHS, social care, voluntary sector organisations and other researchers through public and professional reporting. Reported results will not contain any patient identifiable data.
Reported results will not contain any patient identifiable data.
Your rights
Under certain circumstances and by law you have certain rights with respect to your data. A summary of these rights is available here: https://dataprotection.leeds.ac.uk/individual-rights/
If you are dissatisfied with the way we have used your data, please contact the University’s Data Protection Officer who will investigate the matter. The Data Protection Officer can be contacted at dpo@leeds.ac.uk
If you remain dissatisfied, you have the right to lodge a complaint with the Information Commissioners Office at https://ico.org.uk/concerns
Contact
If you would like to discuss anything relating to this privacy notice or the LAPCD study please contact Linda Roberts, LAPCD Project administrator, at l.roberts@leeds.ac.uk