Data saves lives. There is no clearer demonstration of this than our response to the pandemic, which has been fuelled by data. It has allowed us to bring down the number of deaths and hospitalisations from COVID-19 by creating a Shielded Patients’ List to protect the most vulnerable; prioritise at-risk groups for early vaccination; helped us prove the effectiveness of certain drugs such as dexamethasone which is estimated to have saved a million lives already; and it is helping us better understand and treat Long Covid.
Simon Bolton, Interim Chief Executive at NHS Digital
The schedule for commencing data collection under the GP Data for Planning and Research (GPDPR) has changed. View the latest GPDPR information.
We have been using GP data for many years to better understand and develop cures for all types of serious illnesses and plan the most effective services for the NHS. Beyond the pandemic, it has helped us identify and test diabetic people who are most at risk of losing their sight and ensure they are treated early enough to prevent blindness. And it allows us to analyse if there are disparities in care for groups, such as people with learning disabilities, so we can prioritise and improve services for them.
None of this could have happened without being able to collect and analyse patient data from across the health and care system.
The current system for collecting patient data is over 10 years old and outdated. The new programme is called GP Data for Planning and Research and it has been developed in collaboration with doctors, patients and experts in data, privacy and ethics.
This new system will deliver better health and care outcomes for people across the country and we are absolutely determined to take people with us on this crucial mission. That is why the new system will start on 1 September, giving us an extra two months which we will spend in conversation with patients, doctors, health charities and others to strengthen the plan even further.
Our core principle
I want to be clear – the data collection is done in such a way that patients cannot be directly identified in the data which is shared with us. This has always been our core principle.
Requests for data are always subject to the greatest scrutiny. Data can only be requested for specific purposes – such as medical research and planning – and audits are carried out to ensure it is only being used for the purpose given.
We have seen that trusted research environments like Ben Goldacre’s OpenSafely project can give us incredibly important insights into how we can improve healthcare, and we will adopt a similar approach for this data.
The Secretary of State has asked Sir Ian Diamond, the National Statistician, to advise on how we can ensure we follow best practice in preserving privacy, drawing on the excellent work by ONS to make data available for research in a privacy-preserving way.
The Secretary of State has also asked Helen Stokes-Lampard, Chair of the Academy of Medical Royal Colleges, to advise him on how we can ensure this programme rolls out successfully.
If, despite these safeguards and oversight, people would prefer not to share their data, they can choose to opt out through the National Data Opt Out, which stops the NHS from sharing patients’ data with anyone for planning and research.
But the more people that opt out, or if the people opting out are disproportionately from a specific group, the less useful the data is for researching new medical treatments like dexamethasone or for planning good, sustainable NHS services to meet patients' needs or deal with the pandemic's challenges.
Transforming health and care
Data saves lives. Data from NHS GPs is already being used to protect people, give them better treatments, plan better services, and ensure no one is left behind in the quality of care they receive. This new way of collecting data will deliver better outcomes for patients and transform health and care for everyone.
First published by Health Service Journal on 9 June 2021.
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Last edited: 19 July 2021 12:39 pm