Health Minister Nicola Blackwood delivered a speech to celebrate the role of National Data Guardian.
For all medical staff and patients, the storage, use and distribution of patient data can raise significant concerns. Since the establishment of the NHS in 1948, people have been working hard to determine the best ways to record, maintain and share data safely and securely.
In her recent speech, Nicola Blackwood highlighted the scientific, ethical and regulatory issues surrounding patient data. However, she also shone the spotlight on the UK and how the use of patient data has led to many ground-breaking medical discoveries.
Patient data in the Long Term Plan
The Long Term Plan which set outs the future of the NHS for the next ten years and beyond covers to use of patient data. One of the main goals of the Long Term Plan is to deliver better prevention, targeted treatment and earlier diagnosis. Nicola Blackwood explained that patient data is crucial to the Long Term Plan. She discussed the fact that data can provide safer, more responsive services as well as the reduction in admin time which means patients will receive longer treatment times.
One of the most significant advancements in patient data comes from the 100,000 Genomes Project. As a result of its success, the UK Biobank is now planning to sequence 5 million genomes in just five years. However, alongside the advancements in patient data, medical staff must also balance patient trust.
Statutory footing for National Data Guardian
During her speech, Nicola Blackwood announced that the National Data Guardian is now on a statutory footing which helps to give patients a strong, independent and authoritative voice. With a National Data Guardian, patients will have a chance to have representation on how their data is used across the NHS.
The National Data Guardian will serve as a champion for the voice of the people but also advise patients to challenge the system if they feel there is an inappropriate use of their data. It is a chance for patients to make sure their information is safeguarded and properly used.
Dame Fiona Caldicott is the first National Data Guardian and wants to build public trust for the use of their data. This will be an ongoing discussion as perceptions are likely to evolve through experience that patients have and the advancements of technology which can further build trust that data is appropriately protected.
Cybersecurity for the NHS
Understandably, many patients are concerned about their data after the 2017 WannaCry attack. However, since the cyber attack, the NHS has strengthened its cyber resilience by investing £60 million into data and IT infrastructure. Furthermore, the NHS has imposed hefty fines for any organisation that allows a data breach to occur.
As well as cybersecurity, Dame Fiona believes building trust will come from the NHS staff. Many patients are frustrated with having to explain their medical history at every appointment. As a result, the health system and staff could do more to show the benefits of sharing data.