Privacy notice for the TARGIT-X study (Extended follow up of the TARGIT-A trial)
Introduction
University College London (UCL) have provided the following privacy notice for patients enrolled into the TARGIT X study which aims to test if it is possible to gather long-term information on health status directly from patients enrolled in a clinical trial.
This privacy notice explains who we are, the personal data we collect, how we use it, who we share it with, and your legal rights. This notice is in addition to UCL’s privacy policy (https://www.targit.org.uk/targit-x-study) and applies specifically to personal information held for research purposes in the TARGIT X study.
We keep this Privacy Notice under regular review. It was last updated on 4 September 2023.
About SIG@CCTU at UCL
The trial is run by UCL by the Surgical Interventional Group at the Comprehensive Clinical Trials Unit at UCL (SIG@CCTU at UCL). SIG@CCTU at UCL is a centre for clinical trials. Our research helps to improve health care in the UK and around the world, resolving internationally important questions in cancer, and delivering swifter and more effective translation of scientific research into patient benefits. The SIG@CCTU at UCL obtains appropriate ethical and legal approvals for all trials and studies that it runs. You can find out more about SIG@CCTU at UCL here: https://www.ucl.ac.uk/surgery/research/surgical-interventional-group
SIG@CCTU at UCL is part of the UCL’s School of Life and Medical Sciences. UCL is the study sponsor and is the data controller.
Collecting personal information
Personal data, or personal information, means any information about an individual from which that person can be identified. It does not include data where the identity has been removed (anonymous data). Information about your health is a special category of personal data.
To safeguard your rights we will collect the minimal personal information necessary for our TARGIT X study. We collect personal information, which includes information about your health and treatment, from the following sources:
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Directly from you with your consent
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From third party sources which routinely collect your health data (such as NHS Digital, other UK NHS bodies, and disease registries) with your consent.
Personal information specifically collected for the TARGIT X study include hospital admissions, including diagnoses and treatment, and information on cancers and on deaths.
Using your personal information
All of the personal information we collect is only used for the purposes of carrying out our scientific research in the public interest.
UCL is the data controller for processing personal data in the TARGIT X study. This means they are responsible for ensuring that the processing of your data complies with the General Data Protection Regulation (GDPR; https://www.gdpr.org) and related legislation. The lawful basis for processing personal information in TARGIT X study is GDPR Article 6(1)(e) – “processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller,” and Article 9(2)(j) for special category data – “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes.” We demonstrate that our research serves the interests of society by following the UK Policy Framework for Health and Social Care Research (https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/uk-policy-framework-health-social-care-research/).
Data linkage
We ask for your consent to collect your NHS number, date of birth and postcode so we can link to your health records in databases held by NHS Digital, other NHS national bodies, Public Health England, Healthcare Quality Improvement Partnership, and cancer registries. The data we receive will provide us information on your long-term health outcomes, such if your cancer gets worse, other cancer diagnoses and the treatment you may receive. Linkage to these databases will enable us to better understand the long-term health issues arising in people who have prostate cancer, and tailor future treatment accordingly. Collecting information in this way should make things easier for the staff at your hospital, allowing them to spend more time on clinical care.
There is more information about the trial in the Patient Information Sheet and Consent Form that you received when you joined the trial. You can also contact the research nurse or doctor at your hospital if you have any questions.