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The BRHS Cohort
Almost 40 years ago we asked 7735 men, aged 40-59, to allow us to follow their lives in order to shed light on some of the most important health issues. We are grateful to each of these men for their participation, implicit consent was inferred by the participants involvement, accepting the initial invitation and completing subsequent postal questionnaires. The participants were recruited into this study from a single General Practice in each of 24 British towns in England, Wales and Scotland (Map).
Taking part
Participants attended for detailed physical examinations at study entry(1978-80), after 20 years of follow-up (1998-2000) and 30 year follow-up (2010-2012) and completing regular postal surveys (questionnaires). Participants have been followed up for all-cause mortality, cancer registrations, (which are released and processed with support from the Confidentiality Advisory Group S251 approval) and morbidity (explicit written consent).
By analysing the data you have provided over the years, (measurements from the physical examinations, postal questionnaires, health events, samples) researchers may be able to work out why some people develop diseases such disorders of the heart and circulation, diabetes and dementia and why others do not develop these disorders.
Since 1998, explicit informed written consent has been sought to underpin the follow-up of all participants for all-cause mortality and morbidity and has been regularly updated when the participants have re-attended for follow-up re-examinations.
Administrative data containing personal identifiers (name, address, date of birth, NHS numbers and GP contact details are stored on a secure site that conforms to all industry guidelines for storing personal data.
The research data has been stripped of all personal identifiers and is stored in a numerical coded format. Researchers analysing the data can not identify individuals as they do not have access to the administrative database.
Data collection & Data Sharing
Who provides what information about you?
All information is treated as strictly confidential.
Questionnaires:
the participants have provided information through questionnaires- these provide information on medical and family history, occupation and lifestyle. Any identifiable information entered on the form by the participant (ie name and address) is redacted.
Clinical measurements:
At the clinical examination in 1978-80, 1998-2000 and 2010-2012, the BRHS research team collected various measurements including:
- anthropometry (height & weight),
- physiological (blood pressure, lung function, ECG)
- biological (blood & urine)
Personal information is redacted, forms are identified by the participant ID
General Practitioner:
Participants GP provide information on participants address, cardiovascular events, diagnosis of cancer, diabetes or dementia.
Your records will probably be accessed once a year to allow our researchers to measure changes over time. This will allow us to keep up to date with your health and the other big events in your life. Your GP provides information on your health status and any new problems that you have developed.
Personal Identifiers sent to the GP - Name, address, date of birth and NHS number. so that the GP can identify the correct participant and can confirm/ update contact details,
Click here to see the form that your GP is asked to complete.
NHS Digital - Office for National Statistics (ONS): General Register Office Southport & Edinburgh
Participants in this study were flagged at the National central registry for Medical Research Information Centre at recruitment in 1978-80, for follow-up, mortality and cancer registrations . This has meant that the research study team are notified when a member of the cohort dies and are provided with the event details. Support has been obtained from Confidentiality Advisory Group, S251 approval.
The GRO notify the study centre of participant
- deaths,
- cancer registrations,
- emigrations
- re-instatements
- Primary Care Registrations
New Initiatives: data linkage to NHS Digital datasets
Routine NHS information is collected every time we all engage with the NHS and these data could proof to be a valuable source of information that would help researchers to understand why some people develop diseases such disorders of the heart and circulation, diabetes and dementia and why others do not develop these disorders. These national datasets are held by NHS Digital and include Hospital Episode Statistics, Mental Health -Dementia focussed and Diagnostic imaging datasets. We are exploring the possibility of linkage to this data that would complement the health data that you and your GP have already provided.
Personal Identifiers sent to NHS Digital with a unique project identifier, NHS number, date of Birth and postcode, they will link the data to the agreed datasets and return a pseudo anonymised dataset (unique project identifier, and linked data) that will not be re-linked to personal identifiers.
Data sharing
The BRHS operates a gated approach to data sharing to ensure that the data is accessed by bona fide academic researchers with an established scientific record who will conduct high quality ethical research using BRHS data. Researchers only access anonymised data, they never have access to personal identifiable data.
