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Scientists comment on Wes Streeting announcing that NHS England will be able to share GP data for scientific research.
Professor Sir Martin Landray, Chief Executive Officer, Protas and Professor of Medicine & Epidemiology at University of Oxford, said:
“This is very good news and a very sensible solution.
When we were conducting the RECOVERY trial of treatments for severe COVID-19, it was the ability to access data from both GP and hospital sources that ensured that we were able to understand what happened to the thousands of consented participants, leading to the discovery of treatments that saved hundreds of thousands of lives.
Wes Streeting rightly highlights studies such as UK Biobank, Our Future Health, and Genomics England. But the case is even stronger for clinical trials of drugs to prevent or treat the huge burden of diseases such as common cancers, cardiovascular disease, the consequences of obesity, and dementia. Such trials typically involve large numbers of people followed for long periods of time, during which they may move around the country and have interactions with any bit of the health system. Information held in GP records is critical to understanding the balance of benefits and harms – the pros and cons – of any new treatment approach. Using such information – with consent of course – reduces the burden on individual participants and improves the quality of the evidence generated to inform decisions about clinical care for future patients.”
Dr Rich Scott, CEO at Genomics England, said:
“We welcome today’s announcement by the Health and Social Care Secretary to improve access to primary care data for consented research studies.
“With the right consent and ethical safeguards in place, the benefits for healthcare and research could be transformative.
“The UK already boasts a rich research ecosystem and by ensuring responsible access to health data, we can unlock even greater opportunities for groundbreaking innovation and discovery.”
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 the 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.
“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.
“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.”
Professor Naomi Allen, Chief Scientist, UK Biobank, said:
“The brilliant news that UK Biobank will soon include our participants’ de-identified primary care data is a game-changing development. This addition to the resource will open the door to future research into the causes, treatment and prevention of many diseases that are often diagnosed and managed by GPs, such as diabetes, dementia and depression.
“Our global community of scientists will be thrilled with this boon of incoming data, and I cannot wait to see how they use it to focus research efforts on improving early detection, prediction and prevention of disease.”
Professor Andrew Morris, Director of Health Data Research UK, said:
“These are sensible steps which Wes Streeting has announced, enabling the trustworthy use of health data held by GPs where we know there is support. It has the potential to guide better treatments and improve lives.
“Hundreds of thousands of volunteers have signed up to large clinical studies in the UK, many of them agreeing to share their health records so that more can be learned about major diseases and their treatments. They can be surprised to find out it’s often difficult for those studies to access their GP data, even with this consent.
“Starting a process to direct the sharing of this data with clinical studies that meet appropriate consent and data security processes is welcome, while taking away the burden from hard-pressed GPs who rightly take this responsibility very seriously. It will bring this anomaly to a close and fulfil the wishes of the volunteers.
“Eleven months ago, and with the support of the BMA and Royal College of GPs, it was announced that NHS England would expand the use of the OpenSAFELY platform to enable research beyond COVID-19 and include many other major diseases. The platform is designed to keep GP data confidential and secure. During the pandemic we saw the value of this research in understanding the new coronavirus, and we can expect new insights into the treatment of many other diseases such as cancer, diabetes and asthma. We do now need to accelerate progress and make good on this promise from nearly a year ago, making sure NHS England has the resource and capacity to do this.”
Nicola Perrin, Chief Executive of AMRC and UK Biobank Board Member, said:
“Today’s announcements offer a welcome step to unlocking patient data to transform research and care.
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 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.
Primary care data is often the richest source of health information, containing real world evidence about health inequalities and the biggest burdens of disease. It is excellent to see commitment to extend OpenSafely beyond Covid-19 research, allowing GP data to be interrogated in a safe way. Ensuring the public and healthcare professionals have confidence in the use of patient data is essential to ensure data can be used for the benefit of patients and the NHS, and we look forward to seeing ongoing engagement and careful deliberation about these crucial issues.”
Professor Dame Clare Gerada, Co-Chair NHS Assembly, UK Biobank Board Member, said:
“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.”
Nicola Hamilton, Head of Understanding Patient Data, said:
“The use of GP data, within the NHS and within the medical research sector, has significant potential, and it’s right to say this isn’t being fully utilised at the moment. This needs to be done in a trustworthy way.
The solution for sharing health data relating to ‘consented cohorts’ appears to be a reasonable one, in order to balance respecting participants’ wishes, the liability and risk GPs have for sharing the data, and the needs of the organisations running the studies. There is an ongoing question as to how to ensure any consent given early on in a research programme remains valid and understood, particularly if there are changes to data use later on. We hope that the Department of Health and Social Care and NHS England will continue to work with the GP community, participants, and the research programmes to address this and support all organisations involved.
Regarding the pilots using OpenSAFELY beyond Covid-19 research – OpenSAFELY has demonstrated a trustworthy approach to how it uses and makes data available, with widespread support from the health professional and patient community. We support these pilots being up and running as soon as possible to better understand how the solution can be used in other contexts.
Public perceptions on a move to a single patient record are currently unknown. Anecdotally, whilst many people assume this is already the case, others may prefer the separation of records for different services due to the sensitivities of the services they may access, for example, sexual health, abortion, mental health, etc or fears of discrimination if some information is used a context that they weren’t expecting. Moving to a single record has the potential to support more joined-up care, and avoid situations where a lack of data-sharing can result in patient safety issues. However, it needs to be done carefully and with adequate safeguards and choices for those who might want or need them. We welcome this topic being tested as part of the Large Scale Deliberation programme.”
Declared interests
Prof Martin Landray: Comments are my own not those I work with or for. I do not have any personal financial interests in the pharmaceutical, tobacco, alcohol, food, or technology industries.
Rich Scott is Chief Executive Officer at Genomics England and an Honorary Consultant at Great Ormond Street Hospital and Honorary Associate Professor at UCL Great Ormond Street Institute.
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).”
Prof Naomi Allen: “I am Chief Scientist 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 2019, seconded 80%FTE from the University of Oxford where I am Professor of Epidemiology in 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).”
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).
Nicola Perrin: I am a Board member of Genomics England and UK Biobank. Advisory positions: Member of OSCHR (Office for Strategic Coordination of Health Research), co-chair of DHSC’s Research, Resilience and Growth Advisory Group, member of the Accelerated Access Collaborative Board and the DHSC Data Strategy Advisory Panel, as well as a number of other NHS data programme-specific advisory groups.
Prof Clare Gerada: “I am now a share holder of Huma. (Since last week!).”
Nicola Hamilton: “No declarations of interest”