UK Biobank begins recruiting using NHS data
- 21 September 2007
UK Biobank, the medical research charity-backed DNA database, has begun using demographic data supplied by the NHS to begin recruiting half a million individuals to participate in the long-term research project.
The Department of Health is helping the charity to invite the right people by using electronic NHS records to generate personalised invitations.
UK Biobank is looking to recruit 500,000 people aged between 40 and 69 and with permission, will track their health over the course of the next 30 years or more, to further understanding of the casues of ill-health.
An expert unit from the Department of Health is providing the demographic contact details from NHS records in order to identify people in the right age group and write to them offering an appointment. The DH says records will remain anonymised until an individual grants consent for their medical record to be used.
The DH said: “This invitation process does not involve access to confidential medical records. No medical records will pass to the UK Biobank without the individuals’ consent.”
UK Biobank is one of the biggest and most detailed public health research initiatives ever undertaken.
The charity hopes to be able to provide a valuable resource for research into a wide range of diseases including cancer, heart disease, diabetes, dementia, mental illness, Parkinson’s disease, joint and dental disease and many other life threatening and debilitating conditions.
People who receive letters asking them to participate will be offered an appointment time and date to attend an assessment centre. Participants will answer questions about their current health and lifestyle and will have a number of measurements taken, such as blood pressure, weight, lung function and bone density.
They will also be asked to give small samples of blood and urine. Though not a health check, participants will leave with a list of personal health-related measurements and some indication of how they compare to standard values
The DH’s director general of research and development, Professor Sally Davies, is working with the expert unit in sending the invitation letters.
She said: “An important part of the Department of Health’s work is to stand behind research aimed at tackling important health problems and improving NHS care. Though it may not directly benefit those who take part, UK Biobank will help us understand how our children and our children’s children can live longer, healthier lives. Helping others will, I hope, be a powerful motivation for many people to take part.
“UK Biobank is not just for the fit and healthy. We shall get the most from it if it covers the whole population. So if people who are not in good health receive an invitation, I hope they too will think about what they could do for others by joining in this remarkable health project. I am glad to join Professor Collins in signing the letter inviting patients over 40 to consider taking part. Of course, it is a completely free choice.”
The project is led by Rory Collins from the British Heart Foundation and professor of medicine and epidemiology at Oxford University.
He said: “Health research has taken enormous strides in the past decade and we know a lot about how our bodies work, but we need to find out more. In setting up UK Biobank for researchers in the future – those who many only be in primary or junior school now, or not even born – we are establishing the blood-based resource to do just that and making a significant contribution to improving the health of future generations.”
Simon O’Neill, director of care, information and advocacy at Diabetes UK, commented:
“UK Biobank will be a really useful tool for medical researchers in years to come. The more information we can arm ourselves with about serious conditions like diabetes, the more chance we have of finding new treatments and even cures.
“Diabetes UK would urge anyone who receives an invitation from UK Biobank to volunteer for the project.”
The expert unit will keep the contact details long enough to make sure letters do not go to people who have refused to take part, have already been invited, or have recently died.
UK Biobank has secured approval from a number of ethics and regulatory groups in relation to its research remit, recruitment proves and the storage of blood and urine samples and access to participants’ medical records over many years.
The charity is funded by the Wellcome Trust, the Medical Research Council, the Department of Health, the Scottish Executive and the Northwest Regional Development Agency. It is hosted by the University of Manchester, has the support of the NHS and is a collaborative effort between 22 UK universities.
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