Collection of GP Data for Planning and Research to go ahead on 1 September 2021

8 Jun 2021 02:18 PM

Data saves lives. We have seen that in response to COVID-19 and the successful rollout of the vaccine programme. The vaccine rollout could not have been delivered without the use of data to ensure it reached the whole population, prioritising them in the most effective way.

It has been used to help better understand and develop cures for serious illnesses, such as heart disease, diabetes and cancer.

Making better use of data will benefit millions of people right across the country. It will rapidly improve people’s care and health.

To provide more time to speak with patients, doctors, health charities and others to strengthen the plan even further, the collection of GP data for Planning and Research in England has been deferred from 1 July to 1 September 2021

Simon Bolton, CEO NHS Digital, yesterday said: 

"Data saves lives and has huge potential to rapidly improve care and outcomes, as the response to the COVID-19 pandemic has shown. The vaccine rollout could not have been delivered without effective use of data to ensure it reached the whole population.

"We are absolutely determined to take people with us on this mission. We take our responsibility to safeguard the data we hold incredibly seriously.

"We intend to use the next two months to speak with patients, doctors, health charities and others to strengthen the plan even further.”

The current system for collecting patient data is over 10 years old and now needs to be replaced. NHS Digital will now be introducing a new, improved system to collect this data, ‘GP Data for Planning and Research’.

The new programme for collecting data has been developed in collaboration with doctors, patients, and experts in data, privacy and ethics. Throughout this process NHS Digital has committed to being transparent with patients and the public about the collection and use of data.

It has consulted throughout with the representatives of the GP profession, the BMA and the Royal College of General Practitioners, (RCGP) and listened to their concerns, sharing their desire to ensure the public and patients are able to make an informed decision about how their data is used.

Under the system entire GP records will not be collected. All the data which is collected is protected - or pseudonymised - before it leaves the GP surgery to ensure patients cannot be directly identified from the data while still enabling it to be safely linked to other records.

Data can only be accessed by organisations which will legitimately use the data for healthcare planning and research purposes, and they will only get the specific data that is required. All requests are subject to independent oversight and scrutiny, and audits are conducted to ensure it is being used for the purpose it was requested for.

But it is important patients who would rather opt out of sharing their data for planning and research purposes still have the right to do so through the National Data Opt Out and this will allow them more time to make this decision.

Notes for Editors

1. Examples of the use of GP data to improve lives in the pandemic and beyond:

• Oxford University RECOVERY Trial – Data from General Practices was crucial in identifying which treatments, including dexamethasone, were most effective to improve the outcomes for COVID-19 patients. Dexamethasone treatment reduced deaths by one-third and by April 2021, the drug had saved 22,000 lives in the UK and one million more worldwide.
• Development of the Shielded Patient List – Data from multiple sources was combined to rapidly identify those people most likely to be at high risk from COVID-19 to implement protection and shielding measures for those most vulnerable.
• Vaccine prioritisation – Data from GPs was used to identify those most at risk from COVID-19 according to JCVI criteria and ensuring they were prioritised for vaccination.
• Long COVID – Data from GPs was used to provide the evidence to support the urgent commissioning of appropriate new services to meet the needs of those left with long term symptoms as a result of coronavirus.
• National Diabetic Retinopathy Screening – Data from GPs was used to identify individuals who need an urgent sight test, which can trigger urgent treatment to prevent blindness.
• National Diabetes Audit – Data from GPs is used to support the identification and delivery of the best treatments through comparing outcomes and to identify gaps and improve services for diabetics.
• Learning Disabilities Observatory – Data from GPs is used to identify disparities in care and outcomes for those individuals with learning disabilities and helping to improve services for them.

2. NHS Digital is the national information and technology partner of the health and care system.  Our team of information analysis, technology and project management experts create, deliver and manage the crucial digital systems, services, products and standards upon which health and care professionals depend.  During the 2019/20 financial year, NHS Digital published 285 statistical reports. Our vision is to harness the power of information and technology to make health and care better.