With the GP Data for Planning and Research (GPDPR) service launching next month, Richard Alcock, director of primary care technology at NHS Digital explores how GP data is helping to save lives.
The health service is rich with data which can provide us with life-saving insights. For years it has been used to help us better understand and develop cures for serious illnesses, such as heart disease, diabetes, and cancer.
Never has this been clearer than during the response to the Covid-19 pandemic where the access to data benefitted millions of us.
NHS data was vital in managing the response, from making policy decisions and ensuring hospitals weren’t overwhelmed, to rolling out vaccines and building the Shielded Patient List to identify and protect those most vulnerable.
Data from General Practices was also absolutely crucial for the University of Oxford’s RECOVERY trial which identified which treatments were most effective.
The trial was lifesaving for people hospitalised with Covid-19. It found that using dexamethasone as a treatment reduced deaths by one-third in patients on ventilators and by one-fifth in other patients receiving oxygen only.
Unique and rich dataset
GP data is a unique and rich dataset as it provides a holistic, long-term view of a clinical record and incorporates social considerations in a way that hospital data might not. However, the way in which this data is currently collected does not meet the present or future needs of the system.
A new system of collecting data, called GP Data for Planning and Research (GPDPR), has been developed to allow us to make the most of using data for improved planning and research, and strengthen data security and consistency of how that data is accessed.
We know that most people support the idea of data being used for the wider benefit of the NHS and to improve outcomes for patients. It is likely to help us all at some point in our lives.
We understand concerns about sharing personal medical data and NHS Digital are committed to making sure data is fully protected and used only in ways that will improve patients’ lives.
We take our responsibility to safeguard the data we hold incredibly seriously. We do not take anyone’s entire GP record, only the relevant data within it, and we ensure that there is no risk of anyone being personally identified as a result.
The new system will pseudonymise data before it leaves the GP systems and it will then be protected by end-to-end encryption, which means it will be impossible to link an individual’s name with a medical record.
We have very stringent rules about who can access the data. It can only be accessed by organisations who will legitimately use 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 we conduct audits to ensure it is being used for the purpose it was requested for.
We have worked with patient groups, GP bodies and representatives, NHS commissioners, research organisations, the National Data Guardian and other organisations to build this new system. We have taken on board their recommendations to ensure it is fit for purpose.
Right to opt out
It is important that patients who would rather opt out of sharing their data still have the right to do so through the National Data Opt Out and we have been clear about how they can do this.
There are several benefits to implementing this new system for patients, GPs, system suppliers and those needing the data for planning and research.
For patients, it will allow new treatments to be developed and tested faster to improve outcomes from serious diseases for many people. And it will mean healthcare services can be tailored to their needs.
A reduction in the burden on GPs and their suppliers in processing data requests and the liability that they have for holding, storing and disseminating data will also ensure that data standards are consistent and meet necessary safeguards. It will reduce the risk of large volumes of identifiable patient data being shared multiple times with many organisations.
Researchers and planners will be able to apply for access to the data through one national channel, which will allow them to link datasets and provide more consistency over the data they analyse. This has the ability to unlock vital research through groups such as the UK Biobank and Genomics England.
The past year has shown how health data saves lives. We want to enable clinicians, researchers and academics to access that data in a way that is consistent and secure.