Response to government announcement paving way for access to GP data

Today, the Secretary of State for Health and Social Care, Wes Streeting, made an announcement that paves the way for coded GP data (also known as primary care data) to be shared with consented cohorts like UK Biobank. NHS England (NHSE) will take responsibility for primary care data of all NHSE patients, and studies such as UK Biobank will be able to apply to make the de-identified data of their participants available to researchers. UK Biobank can already access GP data in Scotland and Wales. 

In response to this positive news, Professor Sir Rory Collins, Principal Investigator and Chief Executive of UK Biobank, said:  

“This is a momentous step forward for UK Biobank that will transform the research potential of our database overnight. By adding de-identified primary care data, approved researchers will have an unprecedented toolbox to drive diagnostics and treatments for conditions such as diabetes, dementia and mental ill health, which are largely managed in primary care.  

“Twenty years ago, half a million UK volunteers selflessly donated their biological samples and health data to UK Biobank. Despite their explicit consent, and our efforts over the years engaging with individual GP practices, we have not been able to access GP data on a large scale. Wes Streeting’s directive will take the burden off busy and overworked GPs, putting it into the central hands of NHSE and fulfilling our founders and participants’ original hopes.  

Powerful de-identified data

“The approved researchers who will be able to access this data in the future will receive only coded data related to diagnoses, prescriptions and referrals, not any confidential notes that GPs might hold about our participants. As with all other records we collect, these data will be de-identified before being released to approved researchers. 

“During the pandemic, emergency legislation allowed us to access our participants’ GP data solely for the purpose of COVID-19 research. More than 300 scientific studies used these data, including to identify factors that increase the risk of severe COVID-19 and to uncover that infection is associated with changes in the brain structure. This research changed the trajectory of COVID-19 treatment and showed how powerful GP data can be when combined with other participant data and I look forward to seeing this impact across diseases.  

The full spectrum of disease

“Our GPs are the first port of call for the vast majority of health-related issues. Researchers have been clamouring for this data, which will allow them to investigate the problems we all go to our GP for, whether that’s a mental health condition or supporting a parent with dementia. Adding primary care data to UK Biobank will roughly double the cases of depression and dementia that can be identified, as well as allowing detection of less severe cases at an earlier stage. This means researchers could then study the full spectrum of disease severity, bringing new diagnostic tools and treatments we need closer. 

“We look forward to working with NHS England as they determine how to put this plan into effect. Participants were often surprised and disappointed when we told them that we can’t collect their GP data. Now we can tell them that this is finally changing.” 

"My family has generational cardiac disease and this link to my GP records would be invaluable for preventing and better understanding future cardiac disease through the generations. This is very personal as my father and myself both had heart attacks in our 50’s. I have two sons in their 30’s. Since I’ve joined UK Biobank, I’m amazed how many significant discoveries and links in disease which have been discovered. This will ultimately lead to better treatments and improved outcomes for many diseases."

Sean, UK Biobank participant

"GP data is essential for accelerating the research potential of UK Biobank for the benefit of patients everywhere. By adding the consented GP records of UK Biobank’s generous participants to their dataset, research into conditions such as arthritis, dementia, asthma and mental health conditions – all of which are mainly managed by our GPs – will thrive."

Professor Dame Clare Gerada, Co-Chair NHS Assembly, UK Biobank Board Member

"The addition of consented GP data to UK Biobank will supercharge the research potential of this powerful resource, allowing researchers to understand more about the biggest burdens of disease and the multiple conditions that many people live with. I am so pleased to see a path to resolving this longstanding issue in line with participants’ consent."

Nicola Perrin, Chief Executive of AMRC and UK Biobank Board Member

"I am proud to be one of the half-a-million participants who contribute information to UK Biobank. UK Biobank facilitates amazing research work around the world with data from participants which is enabling significant advances in medical research. I am more than happy to be part of this fantastic work and feel sure that the inclusion of extra details, i.e. coded data, from GPs would be an amazing asset that I wholeheartedly support."

Val, UK Biobank participant