The Problem
Good medical data is essential to human health research. Increasing the availability of data about people’s genes, environment and lifestyle factors coupled with new technologies means that health research can be performed faster and at a larger scale than ever before with the aim of improving diagnosis and treatment of diseases.
However, health data is extremely sensitive and a lack of public trust in its handling, together with an absence of financial and operational support to manage the collection, secure storage, governance, and use of health data, impedes access for researchers and undermines life-saving work.
The Solution: UK Biobank
In the UK, the Medical Research Council, Scottish Executive, UK Dept of Health, Wellcome Trust (Medical Research) recognised this and funded the establishment of the charity UK Biobank in 2007.
The charity established a large, data-rich anonymised biomedical database aimed at increasing the availability of human health research data for researchers, industry academia, and charities. The ultimate goal was to encourage more health data research in the public interest.
Through the NHS, 500,000 UK citizen volunteers were recruited to provide information, with data collection scheduled to last for 30 years. Initial inputs collected included: Lifestyle questionnaires, activity surveys, biomarkers, blood, urine, and saliva samples, and now includes images (brain, heart, full body MRI, full body DEXA scan of the bones and joints and ultrasounds of the carotid arteries) and genetic data (genotyping and whole exome/genome sequencing).
Access to the database is overseen by the UK Biobank Principal Investigator and the UK Biobank Access Sub-Committee. They grant access to health researchers, industry, academia and charities if their research is in the public interest, and provided they publish their findings in an open source publication and share them back to the Biobank.
Since its founding, 20,000 researchers have been approved for access and their work has identified various determinate factors related to disease risk, aiding preventative screening of at-risk people.
Biobank is considered to be the gold standard example of medical data stewardship and how to enable medical data sharing for public good. Its approaches to managing numerous stakeholders’ interests, protecting a large highly sensitive database and applying governance and oversight demonstrate the support required in successfully operating a data sharing network.
Key Benefits
- Better public health outcomes
- Increased health research activity which can be more effective
- Improved disease treatment & preventative screening
