Privacy notice · IRAS 360940
Somerset NHS Foundation Trust is running a research study to find out whether blood test results the NHS has already taken can identify people at risk of heart disease years before symptoms appear. It compares long-term patterns in blood tests already held for the Somerset population with around 7,500 CT heart scan results recorded in Somerset NHS Foundation Trust. No one will be contacted, there are no new tests or appointments, and nobody’s care is affected.
What we use, and how
Only your HbA1c, LDL cholesterol and CRP results and their dates, your CT coronary calcium score and scan date, your year of birth, your gender, and index of multiple deprivation worked out from your postcode — researchers cannot see postcodes or full date of birth. Nothing about your name, address, GP, treatment or any medial condition is used.
Your NHS number is used at one step only, to match the right blood tests to the right scan. It is then replaced with a one-way irreversible code, with no look-up list kept, so the research team cannot tell whose record is whose. No decisions are made about you, and nothing found in the research goes into your medical record.
Why we can do this without asking you
Somerset NHS Foundation Trust is the data controller of this project. It uses your information under Article 6(1)(e) of the UK GDPR (a task in the public interest) and Article 9(2)(j) (scientific research). As the linking step uses NHS numbers without consent, the study also has “section 251” support from the Health Research Authority, advised by the independent Confidentiality Advisory Group [Reference 26/CAG/0089]. Asking 7,500 people individually would be impractical and would bias the results. The study will not begin until it has Research Ethics Committee and Health Research Authority approval.
Your choices — three separate things you can do 1. A National Data Opt-Out excludes you from all research and planning uses of your health data across the NHS, including this study. Register or change it at nhs.uk/your-nhs-data-matters or on 0300 303 5678. 2. The existing hepatoSIGHT opt-out excludes you from the liver case-finding pathway. It does not by itself exclude you from this study. Contact catherine.denver@somersetft.nhs.uk 3. This study’s own opt-out excludes you from this study only. It does not affect the liver pathway and does not need a National Data Opt-Out. Contact catherine.denver@somersetft.nhs.uk Opting out never affects your care. |
Keeping information safe, and your rights
Your information is held on secure NHS-assured systems in the United Kingdom. It never leaves the UK, is never shared with insurers, employers or marketers, and is never sold. Results are published in grouped, de-identified form only.
You have the right to be told how your information is used, to ask for a copy, to have it corrected, to restrict or object to its use, and to complain to the Information Commissioner’s Office. Once the one-way irreversible code has replaced your NHS number we can no longer identify your record, so some of these rights cannot be applied to the research dataset.
Who to contact
This study: Dr Katie Denver, Clinical Research Fellow — catherine.denver@somersetft.nhs.uk
Data Protection Officer: Mrs Louise Coppin, Somerset NHS Foundation Trust, Musgrove Park Hospital, Taunton
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