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Scientists comment on Government announcement that GP data will be shared with consented cohorts for research.
Prof Cathie Sudlow, Head of School of Population Health Sciences, College of Medicine and Veterinary Medicine, University of Edinburgh, said:
“I am delighted that – at long last – there is a clear route to linking GP data to large-scale population-based research resources in the UK. Not only is this respecting the commitment and honouring the consent of participants in UK Biobank, Our Future Health, the 100,000 Genomes Project and beyond, it promises to enable huge opportunities for research to improve understanding of and develop new approaches to prevention, diagnosis and treatment of all of those health conditions that are diagnosed and managed mainly or exclusively outside of hospital – arthritis, dementia, diabetes, asthma, depression and anxiety, to name but a few. The substantial benefits that will accrue for patients and the wider public cannot be overstated.”
Prof Liam Smeeth, Director of the London School of Hygiene and Tropical Medicine, who was a GP for the past 30 years, said:
“This is very exciting news as these GP data will help to transform understanding of diseases, and how to prevent and treat them. Researchers like me will be able to use the data to understand what’s really causing disease, and why some drugs work for some people and not others. We will solve so many major health challenges that affect us today, and we’ll do so because of this initiative to make these data available now.”
Nicola Perrin, Chief Executive of the Association of Medical Research Charities, said:
“Where people have given consent for their health records to be used in a cohort study such as UK Biobank or Our Future Health, it is absolutely right that data should flow according to patient choice. Today’s announcement is an important step to enable this to happen, with appropriate safeguards. Data from primary care is often the richest source of health information, containing real world evidence about the multiple conditions that many people live with. We look forward to seeing the results of research that will now be possible, tackling a huge range of different diseases, ranging from arthritis and asthma, to dementia and diabetes.”
Professor Andrew Morris, Director of Health Data Research UK, said:
“Access to consented participant GP data is a genuine game-changer for UK science – and above all, for patients. For too long, researchers have only seen the final chapter of a patient’s illness through hospital records. Primary care data provide the critical beginning and middle of the story – how diseases start, how they’re managed in the community and how people respond to treatment.
“Crucially, these are data people have chosen to share, and they will only be within secure, tightly governed research environments with independent oversight. Securely linking this missing piece of the puzzle provides researchers the comprehensive picture needed to spot disease earlier, speed up discovery and deliver safer care.”
Professor Sir Rory Collins, Principal Investigator and Chief Executive, UK Biobank, said:
“Access to our participants’ coded GP patient data will be a game changer for research into some of the most common and debilitating diseases. There’s no doubt this will revolutionise the power of UK Biobank. Combined with the existing wealth of genetic, lifestyle, imaging, and environmental information on our half a million volunteers, researchers will be able to study diseases like dementia, depression, joint pain, and asthma in much greater depth, and earlier in their development when treatment is typically more effective.”
Anna Steere, Head of Understanding Patient Data, Understanding Patient Data (UPD), said:
“When people join long-term research studies to help drive life-changing discoveries they expect their data to be used securely and responsibly. This change makes the use of GP records more consistent and reliable for research where participants have already given consent, without collecting any new data or affecting anyone outside these studies. It’s a pragmatic approach that makes better use of data already collected, helping important studies run effectively and accelerate progress for patients.”
Declared interests
Nicola Perrin: Nicola is a member of the Board of UK Biobank, Genomics England and the Adolescent Health Study.
Prof Andrew Morris: Andrew Morris is Director of Health Data Research UK, the national institute for health data science; is Professor of Medicine and Vice Principal at the University of Edinburgh; is President of the Academy of Medical Sciences, has minority (<1.5%) shareholding in Aridhia Informatics and a small number of shares in GSK (<£5,000).
Prof Sir Rory Collins: “I am CEO and PI of UK Biobank, which is a Charitable Company established as a Joint Venture by the MRC and Wellcome. I have been in that role since September 2005, seconded 60%FTE from the University of Oxford where I am Head of the Nuffield Department of Population Health (which, along with other research organisations globally, benefits from using the UK Biobank – without any preferential access – for health-related research that is in the public interest).”
For all other experts, no reply to our request for DOIs was received.