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The NHS desperately needs to modernize its data strategy

NHS Digital policymakers are in desperate need of modernizing their data strategy. Here we look at how it can be done

To build confidence in the General Practice Data for Planning and Research (GPDPR) initiative, the UK’s National Health Service should educate patients – not about health – but about the value of sharing data.

After outrage from privacy activists, followed by journalists and ultimately ordinary citizens, the NHS put the launch of its The digital GPDPR initiative on hold indefinitely.

In many ways, the delay is not surprising. The pace of digital transformation in the organization – which remains the world’s largest purchaser of fax machines – has a reputation for being woefully slow. However, the need for more effective, data-driven decision-making within the NHS remains an urgent issue, especially as staff continue to tackle an ever-growing backlog of patients.

The current situation is untenable

Currently, individual NHS trusts and surgeries are responsible for the storage, security and maintenance of patient data. According to Cloudian’s vice president of global systems engineering, Neil Stobart: “This decentralized management model carries significant security and data protection risks. As such, bringing the data into a single point of management is a no-brainer. “

He continues: “A centralized database of patient records would provide many benefits, including better and more consistent care. Medical records would be available to any general practitioner a patient visits. Additionally, individuals would be able to access their own records from mobile devices – a key step in allowing them to feel in control of their care. Finally, a centralized database would reveal valuable information on regional and national health trends, and the data could also be used by research partners to develop new drugs and treatments.

Ou Lenchner, CEO of Bright Data, argues that the NHS has a responsibility to use data more effectively: “Like all public organizations, the NHS needs to foster an internal culture that understands and values ​​the opportunities of data, and how to harvest it. the fruits. responsibly. This topic is covered by the recently published UK Government National data strategy, in which we advised moving away from the focus on “private” data towards a greater focus on the value of “public” data.

NHS Digital should focus on solving privacy concerns

“Data privacy is a very controversial topic at the moment,” says Lenchner. “While this is undoubtedly an important question, much of the public conversation is driven by fear and a lack of awareness. Looking at opposition to NHS Digital’s plans, it’s clear to see. “

He adds: “It is up to those leading this project to work with the activists to bring clarity and allay doubts. There is 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 realized.

Stobart also believes greater clarity is needed for NHS Digital to be successful. He explained, “I’ve seen a lot of claims – especially on social media – that patient data is being sold to commercial third parties. This is not what is planned. All data shared with business partners will be anonymized and personal information such as name, address, phone number and bank details will not be shared. NHS Digital policymakers and data industry leaders should do their part to dispel the myths circulating around this project. Full transparency is not negotiable.

It is clear that, in order to sustain services, progress in data management and analysis is essential within the NHS and across the public sector. In the long term, it is the patients who will reap the rewards, receiving better and more consistent care, as well as having a better overall understanding of the health needs of the UK population. However, without continued public engagement from NHS Digital and the data industry at large, opposition to GPDPR is unlikely to disappear. Policymakers must act now.

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