WIREDGOV

Respected voices across the clinical, academic, research and patient spectrum have welcomed the introduction of a new service from NHS Digital, which will more efficiently collect primary care data and make it available for better planning of healthcare services and for use in medical research.  

NHS Digital has been collecting data from GPs to meet bespoke data requests for these purposes for over ten years, through its trusted General Practice Extraction Service (GPES).

This system is now being replaced with their new General Practice Data for Planning and Research (GPDPR) service, a broader general-purpose collection which will enable faster access to pseudonymised patient data for planners and researchers. 

Today (12 May 2021), NHS Digital has issued a Data Provision Notice to GPs to enable this new and improved data collection process to begin from 1st July.   

The pandemic led to a significant increase in the need for GP data from NHS Digital to support clinicians, researchers, academics and commissioners. It has been used by NHS organisations and researchers to help run and improve health and care services.  

This includes identifying those most vulnerable to coronavirus, rolling out vaccines, and for critical COVID-19 research, including the University of Oxford’s RECOVERY trial which identified that treatment with dexamethasone improves the chances of survival for people hospitalised with COVID-19.   

To support these needs, NHS Digital was legally directed to collect and analyse healthcare information about patients, including from GP records, for the duration of the coronavirus emergency period. The current collection system (GPES) performed adequately during the pandemic but is based on legacy technology.  

As we emerge from the pandemic, but into an era of enormous demand for NHS services, data will continue to be a critical asset in planning services and facilitating research into conditions such as long COVID. Therefore, NHS Digital has been legally directed by the Secretary of State for Health and Social Care to establish a new strategic system to collect and provide access to near-real-time data from GP Practices for planning and research purposes.   

The new service (GPDPR) has been designed to the most rigorous privacy and security standards, to meet patient expectations with regards to the confidential management of patient data. 

NHS Digital has consulted with patient and privacy groups, clinicians, and technology experts, as well as with the British Medical Association (BMA), Royal College of GPs (RCGP), the National Data Guardian (NDG) and multiple other organisations and communities across the health and care system.   

Any data which directly identifies an individual will be pseudonymised and then encrypted before it leaves a GP practice. Data will only be shared with organisations who have a legal basis and meet strict criteria to use it for local, regional and national planning, policy development, commissioning, public health and research purposes. 

If a patient does not want identifiable data to be shared outside their GP Practice except for their own care they can opt-out at any time, by requesting that their GP practice record this preference, known as a Type 1 opt out, or by registering their opt-out through the National Data Opt Out service on nhs.uk, or both.  

The new system will improve efficiency in data collection from GP practices, and significantly increase the speed and efficiency of providing appropriate access to that data, reducing the burden on GPs. Patients can have greater confidence that their data is being used in ways which preserve their confidentiality, as a result of the rigorous, standardised and unified approach to data management and access.  

NHS Digital is committed to complete transparency with patients and the public about the collection and use of health data. We will continue to publish detailed information about our data policies, protocols and systems and we will continue to publish details of all data we share via our data release register.

Sarah Wilkinson, NHS Digital CEO, said: “The power and utility of health data was clearly demonstrated during the pandemic, where it supported NHS organisations and researchers to roll-out vaccines, identify those most at risk from COVID-19 and investigate disease pathology, amongst other things.  

“General Practice data is particularly rich and valuable because many illnesses are treated predominantly in primary care. We want to ensure that this data is made available for use in planning NHS services and in clinical research, but it is critical that we do this in such a way that patient confidentiality and trust is prioritised and never compromised.”   

“We have therefore designed technical systems and processes which incorporate pseudonymisation at source, encryption in transit and in situ, and rigorous controls around access to data to ensure appropriate use. We also seek to be as transparent as possible in how we manage this data so that the quality of our services are constantly subject to external scrutiny.   

“I am proud that NHS Digital is making NHS data work for all of us who depend on the NHS.”  

Arjun Dhillon, Caldicott Guardian and Clinical Director at NHS Digital, said: “This dataset has been designed with the interests of patients at its heart.  

“By reducing the burden of data collection from general practice together with simpler data flows, increased security and greater transparency, I am confident as NHS Digital’s Caldicott Guardian, that the new system will protect the confidentiality of patients’ information and make sure that it’s used properly for the benefit of the heath and care of all.”  

Chief Medical Officer, Professor Chris Whitty, said: “The health and care system is increasingly governed by data, which has proved its worth throughout the pandemic. Better access to primary care data will give the NHS the ability to make the best use nationally of the richly-valuable and high-quality data that is collected in every GP practice.”  

Sir Patrick Vallance, Government Chief Scientific Adviser, said: “The pandemic has clearly demonstrated the importance of having timely and comprehensive healthcare data. Data collected from the NHS has been instrumental in the management of the pandemic response on a daily basis – for everything from monitoring the disease through to vaccine rollout and identification of the most vulnerable groups.  

“The ability to access and interpret data from primary care will be a great asset for the NHS and research and will enable further improvements in care.”    

Matthew Gould, CEO for NHSX, said: "Throughout the pandemic, healthcare data has been used in new ways to care for people and save lives.  

"Information from primary care has driven safer and more joined-up care, sped up life-saving research and helped us to understand, anticipate and solve problems facing our critical services.  

"I welcome NHS Digital's work to ensure data helps the NHS give the safest, highest quality care it can as we enter the long recovery period, while keeping that data safe and protecting patient privacy."  

Professor the Lord Darzi of Denham, Director of the Institute of Global Health Innovation at Imperial College London, said: “The pandemic has shown us how important it is to have access to patient data and that giving clinicians, public health bodies, scientists and researchers access to the right data, can save lives.  

“This new, robust system will allow us to continue to build on this progress while also streamlining the collection process, reducing the burden for GPs, and maintaining patient privacy by keeping data secure.”  

Chris McCann, Director of Communications, Insight and Campaigns at Healthwatch, said: “Most people tell us they are happy for the NHS to use their information to help improve care. The pandemic has shown how important effective data sharing is, from identifying people who are clinically extremely vulnerable to managing the effective roll out of the vaccine.   

“Importantly, we’re pleased to see NHS Digital has put the right safeguards in place, giving people a choice about how their data is used and the ability to opt out if they want to.”  

Angela Coulter, patient representative of Health Data Research UK, said: “Use of de-personalised data for planning and research offers huge benefits for patients if it is done in a trustworthy and secure manner with appropriate safeguards.  

“Public oversight of the process is crucial, so I am pleased to hear that NHS Digital is committed to involving people in shaping developments in this area. I look forward to seeing outputs that lead to public benefit in terms of improved services and better health outcomes.”  

Georgina McMasters, Patient Partner, involved with NHS DigiTrials and health research, said: “The pandemic has demonstrated the value to patients, clinicians and researchers of speedy access to good quality, well linked data. A secure, better connected system, causing a minimum of extra work, will be very much in the best interests of the health and wellbeing of patients.”  

Maisie, Patient Partner, involved with NHS DigiTrials and health research, said: “I am pleased to see steps being taken to improve the data collection systems within primary care for planning, public health and research purposes, to improve treatment and care of patients and the public.  

“The hope is this improvement will be of significant public benefit to all patients and the public as it continues to support the collection, storage, protection, sharing and use of data, in improving health outcomes on an individual and population level and reducing widening health inequalities.  

“As a foundation it should ensure that there are ´no surprises´ in how this data is used and consent for use and that sharing of data, particularly for clinical trials and research, is sought and understood by patients and the wider public across the patient pathway in a range of health and social care settings.”

Professor John Bell, Regius Chair of Medicine at the University of Oxford, said: “General Practice Data for Planning and Research is an important new programme being delivered by NHS Digital. Despite remarkable progress in ensuring data that supports the healthcare needs of the population are collected across the NHS, through hospitals and GP surgeries, the constraints in accessing this data has limited the benefits for patients and for the development of the health system.  

“This new program should greatly improve that position and, after careful management of data governance, the system will allow patients to benefit from a better understanding of their disease and how best to manage it. It will also enable better health outcomes for patients through enabling research into new treatments for a range of conditions. NHS Digital are to be congratulated on making this happen.”  

Professor Martin Landray, Joint Chief Investigator of the RECOVERY trial, the world’s largest trial of treatments for COVID-19, said: “Making use of routinely collected NHS data has been key to the success of the RECOVERY trial. For example, it sped up the discovery that dexamethasone improves the chances of survival of hospitalised patients. That finding has had a global impact and is estimated to have saved 1 million lives worldwide over the past year.   

“An enhanced service for GP data will allow us to extend this effort, accelerating the study of new treatments not only for COVID-19 but for other common conditions such as heart disease, diabetes, and cancer, that impact on patients’ lives.”  

Dr Louise Wood, Director of Science, Research and Evidence at the Department of Health and Social Care, said: “Throughout the pandemic, access to patient data for research has been crucial to understanding disease epidemiology, development of  treatments which have helped prevent deaths from Covid-19, and testing vaccines in communities across the county.  

“There is still so much more to do and learn. We must build on the progress we have made and this access to GP data will allow us to do just that, for a whole range of conditions. Access to patient data is critical to ensuring we remain at the forefront of research into breakthrough treatments that can transform lives.”  

Professor Naomi Allen, Chief Scientist of UK Biobank, a large-scale biomedical database and research resource, said: “I wholeheartedly support this provision of access to de-identified primary care data to enable a wide range of research to be performed that will benefit public health.  

“This builds on efforts made in response to the COVID-19 pandemic, whereby primary care data was made available for the sole purpose of COVID-19 research. This has highlighted the importance of sharing this data with the research community to enable and accelerate research into a wider range of conditions to improve human health.”  

Fiona Watt, Executive Chair of the Medical Research Council, said: “Data from primary care will allow researchers to understand the full picture of health and disease in England. We know that too many people suffer from more than one disease and that number is increasing as our population ages. This data collection will enable research to understand how to prevent and treat this multi-morbidity effectively, ultimately saving lives.”  

Dr Peter Short, Clinical Lead GP Data for Planning and Research at NHS Digital and retired GP, said: "Trustworthy and consistent use of patient data has the ability to transform planning and research life changing treatments and interventions, to improve public health outcomes and to make a real difference to patients and the frontline staff that treat them.   

“When building this, we've listened to the GP representatives to ensure that professional concerns and needs are met. This collection allows GPs to be confident that patient data is being appropriately processed, maintained and utilised, while reducing the burden of data requests on already busy GP practices."  

Vanessa Young, practice manager Vine Medical Centre based in East Molesey, said: “The new GP Data for Planning and Research system should be helpful to me as a practice manager by reducing the responsibility and burden of assessing data requests.  

“Through promoting the information available on the NHS Digital website, I will be able to ensure my patients have more detailed information about how their data is used. I see this as an improvement, and support the careful, trustworthy but necessary use of data from our GP practice and patients to help health services recover as quickly as we can from the pandemic.” 

Dr Matt Hoghton, GP Clevedon Medical Centre and Clinical Adviser to NHSX, said: “Having timely health and care data has been vital to our practice to cope with the pressures during this pandemic, particularly with the rollout of the vaccination programme. The new system will continue to provide a secure way to collect data that we and our patients can trust and help us to use our resources efficiently.   

“This also means NHS researchers will increasingly approach NHSD directly rather than practices and improve consistency and transparency about data use, leaving our GP practices less distracted from the crucial front-line work.   

“As well as the benefits for research, there will be direct care quality improvements for the populations we serve, including earlier access to new products for our practices and patients, and greater operational insights to provide a bigger picture of the health and care issues of our patients and our practices face.”  

Notes for editors