None of this research would be possible without your help. We are very grateful and hope that you will continue to take part.
Fair Processing Notice
What data do we have?
Throughout the study you have provided us with your information through questionnaires, an interview and examination with a nurse and from your blood test results. If you would like to look at the questionnaires you filled in they are on our Data Collection page.
GP surgeries are contacted every few years to provide information on address details and any diagnoses of cardiovascular events, cancer, diabetes or dementia. This allows us to keep up to date with your health status and any new problems that you have developed. You can see the forms that the GPs fill in on our Data Collection-Record Review page.
We also receive data from NHS Digital who routinely provide us with notifications of participants that have passed away, cause of death, entry and exit to the NHS system and notifications of cancer registrations. Mortality data is provided by NHS Digital on behalf of the Office for National Statistics. For more information visit our Other Data Sources page.
Why do we need this data?
Your information is stored on a secure database at University College London.
By analysing the data you have provided over the years, (measurements from the physical examinations, postal questionnaires, health events, blood samples) researchers may be able to work out why some people develop diseases when others do not.
Who do we share the data with?
1. NHS Digital
identifiers of BWHHS participants (including name, date of birth, NHS number and postcode) are securely sent to NHS Digital to provide a
link to the data that they already hold. This enables them to provide us
with the notifications listed above under What data do we have?
2. Your GP
Personal identifiers of BWHHS participants (including name, date of birth, NHS number and address) are sent to their own GP practices to provide a link to the data that they already hold. This enables them to provide us with the event notifications detailed above under What data do we have?
Any information from BWHHS participants being shared with researchers is done so only with the unique study identification number. Name, date of birth and any other identifiable information is not released outside of the database to share with researchers.
Sharing the data with other researchers allows us to look at wider topics, maximising its value.
You can read about our work with other researchers on our Collaboration pages.
We sought your consent at the beginning of, and throughout the study to
comply with Data Protection laws and to observe the common law duty of
confidentiality owed to patients.
This gives us your permission to hold and use information that identifies you, for research. It also allows us to follow up on any changes to your health.
You can view the consent forms you filled in on the Background page.
Our Commitment To You
- You will not be identified from the research - researchers do not see your name with your information - they just see your ID number
- Taking part in the project is voluntary and you are free to withdraw at any time without giving a reason.
- Every research project is checked to make sure it meets the highest scientific and ethical standards.
- In the same way as a doctor who treats you is bound to keep your information confidential, the BWHHS are bound to keep your information confidential.
- There are independent experts whose job it is to look at what we do and how we do it to make sure your rights are protected.
Withdraw Your Consent
You have the right to withdraw consent at any time. If you are considering withdrawing from the study, please visit the Contact Us page to see how to get in touch. The BWHHS will respect your consent decision.
All personal information is treated in the
strictest confidence in accordance with the Data Protection Act (1998)
and all samples in accordance with the Human Tissue Act (2004).