NHS Digital decision-makers desperately need to modernise their data strategy. Here we look at how this can be done
To build trust for the General Practice Data for Planning and Research (GPDPR) initiative, the UK’s National Health Service should educate patients – not on health – but on the value of data sharing.
After outrage from privacy campaigners, followed by journalists and eventually ordinary citizens, the NHS has put the launch of its Digital’s GPDPR initiative on hold indefinitely.
In many ways, the delay is unsurprising. The pace of digital transformation in the organisation – which remains the world’s largest buyer of fax machines – has a reputation for being painfully slow. However, the need for more effective data-driven decision-making within the NHS remains a pressing issue, especially as staff continue to battle an ever-growing patient backlog.
The current situation is unsustainable
Presently, individual NHS trusts and surgeries are responsible for storing, security and maintaining patient data. According to Cloudian’s VP of Global Systems Engineering, Neil Stobart: “This decentralised management model carries significant security and data protection risks. As such, bringing data into a single point of management is a no brainer.”
He continues: “A centralised database of patient records would provide many benefits, including better, more consistent, patient care. Medical records would be available to any GP that a patient visits. Plus, individuals would be able to access their own records from mobile devices – a key step towards empowering them to feel in control of their care. Lastly, a centralised database would reveal invaluable insights into regional and nationwide health trends, and data could also be used by research partners to develop new medicines and treatments.”
Or Lenchner, CEO of Bright Data, argues that the NHS has a responsibility to use data more effectively: “Like all public organisations, the NHS needs to foster an internal culture that understands and appreciates the opportunities of data, and how to reap the rewards in a responsible manner. This subject is covered in the UK Government’s recently published National Data Strategy, in which we advised a shift away from an emphasis on ‘private’ data towards a greater focus on the value of ‘public’ data.”
NHS Digital should focus on assuaging privacy concerns
“Data privacy is a very contentious topic right now” says Lenchner. “Though it’s no doubt an important issue, much of the public conversation is driven by fear and a lack of awareness. Looking at the opposition to NHS Digital’s plans, this is clear to see.”
He adds: “It’s up to those leading this project to work with campaigners to bring clarity and assuage doubts. There’s a real need to broaden the public’s understanding of data and the benefits it can bring, alongside an informed appreciation of the risks and how they can be managed. Only then can the enormous social and economic opportunities of data be realised.”
Stobart too believes that greater clarity is needed if NHS Digital is to succeed. He explained: “I’ve seen numerous claims – particularly on social media – that patient data will be sold to commercial third parties. This is not what is planned. Any data shared with commercial partners will be anonymised and personal information such as name, address, phone number and bank details won’t be shared. NHS Digital decision-makers and data industry leaders should do their bit to dispel the myths circulating around this project. Complete transparency is non-negotiable.”
It’s clear that, in order to futureproof services, advances in data management and analysis are vital within the NHS and across the wider public sector. In the long-term, it’s patients that will reap the rewards, receiving higher quality, more consistent care, as well as benefiting from a better overall understanding of the UK population’s health needs. However, without continued public engagement from NHS Digital and the wider data industry, opposition to GPDPR is unlikely to disappear. Decision-makers need to act now.
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