Case Study: UK Biobank
UK BioBank is a major international health resource, operated under the guidance of the Department for Health, the Wellcome Trust, and the Medical Research Council. It is the largest resource of its kind, following the health and wellbeing of 500,000 volunteer participants from across the UK. The study began in 2007, and aims to improve prevention, diagnosis, and treatment of a wide range of serious illnesses, including cancer, heart disease, stroke, and diabetes. BioBank also enables research into other conditions, including depression, dementia, arthritis, osteoporosis, as well as eye disorders. There are now more than 14,000 approved researchers accessing its data from countries around the world, and the resource regularly results in high-impact research publications.
Researchers assess the genetic makeup of each participant, helping scientists to discover why some people develop particular diseases while others do not. The resource is open to bona fide researchers from anywhere in the world, including those funded by academia and industry. Since 2012, over 13,000 research registrations have been approved by UK BioBank, comprising of researchers from over 1,375 institutions in 68 countries. Participants were asked to provide readings such as height, weight, and spirometry readings, as well as blood samples. Crucially, they also consented to the linking of their anonymised electronic medical records (EMR) to the BioBank database – a vital component in any healthcare research.
TPP was the first provider of EMR data and data expertise to UK BioBank, and remains the largest contributor of such data to this day. At Biobank’s inception, TPP’s SystmOne cloud solution allowed for a simple and streamlined extraction and linkage of participants’ EMRs to the BioBank resource. In a single operation, TPP provided BioBank with the comprehensive medical records of 500,000 patients, giving scientists unparalleled research opportunities. The efficiency of this process was guaranteed by the use of uniform terminology and clinical structures, and this has been a significant advantage for UK BioBank in the course of its development.
The partnership between TPP and UK BioBank has resulted in the creation of one of the world’s richest datasets, taking advantage of the UK’s widespread use of lifelong EMRs. Through these records, UK citizens have a comprehensive and structured care history, maintained predominantly by their primary care physicians. TPP and UK BioBank have worked collaboratively to ensure the extraction of this primary care data has been conducted in a secure, scalable and sustainable manner. The extraction is endorsed by the Royal College of General Practitioners.
The linkage of these records to the BioBank resource has supported researchers as they develop algorithms to accurately identify diseases and their subsets. Research projects using UK BioBank include identification of genetic variants that predict glaucoma risk, as well as the development of a simple eye test which predicts dementia. Further studies have investigated links between air pollution and cognitive function, while researchers have used the resource to validate polygenic risk predictors in clinical care.
TPP is also working with UK BioBank to make GP data available for scientists tackling the Covid-19 outbreak. Researchers have already been supplied with primary care data, and this information will be updated throughout the crisis. This data will then be linked to Hospital Episodes and intensive care data for the 500,000 UK BioBank participants. These volunteers are aged between 40 and 69, meaning that many fall into the age range most likely to be at risk from Covid-19. It is hoped that the use of this sizeable dataset can help researchers identify genetic factors behind the vast variation in the severity of Covid-19 symptoms.
The ability to conduct research on high quality, long-term health data, combined with biochemical and genetic markers, means that the partnership between TPP and UK BioBank continues lead to discoveries that will change the way we live our lives in the 21st century.