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The importance of data in fighting disease during the pandemic

Clinical data is acutely private and confidential, and patients rightly demand that it is handled with great care. Sarah Wilkinson, Chief Executive of NHS Digital, explains more.

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Sarah Wilkinson, CEO of NHS Digital

Due to the complexity of diseases and variation in outcomes, each patient’s data is extraordinarily valuable in gaining insights into the treatment of others. Medical research, as well as the work of optimising the planning and delivery of clinical services, depends on analysing rich, detailed data sets to identify variations and patterns in illness and treatment outcomes. 

Increased interest in patient data

During the pandemic there has been a significant increase in the number of parties seeking quick access to patient data from the NHS, academia and the private sector. NHS Digital usually receives around 60 applications per month, but in April this jumped to nearly 200.

When addressing a public health emergency, assessments as to the appropriateness, necessity and proportionality of proposed new uses of data must be made quickly, but with no reduction in rigour. In all circumstances, patients must be able to trust the way in which data usage decisions are made and the parties who make those decisions. Trust is tested more acutely when judgements are more complex.

Confidential data, once shared, can't easily be retracted.

The risks of inadvertently allowing misuse of clinical data are quite different to other technical risks we manage in crisis situations. Going live with a poorly designed or implemented digital service might result in frustrated users, occasional service failures or fraught operations activities. All these situations are ultimately recoverable. Confidential data, once shared, usually can’t be easily retracted. Insights deduced from that data about individuals or communities can’t be ‘unlearned’. 

Ensuring data is shared efficiently and safely

During this pandemic NHS Digital has, again and again, achieved the nirvana of data disseminations which are both fast and safe.

This acceleration has been facilitated by two key changes, in addition to the blood, sweat and tears of dedicated information governance staff across the health and care system. Firstly, the legislative frameworks that govern the processing of confidential patient information frameworks are more permissive when we are dealing with communicable diseases and other threats to public health. Second, there has been no tolerance for inefficient administrative processes and all parties have worked intensely hard to increase performance.

Data consumers have also upped their game: The urgency of the situation has encouraged much clearer articulation of need, of intended usage and of provisions for secure data management. Conversations between parties about data dissemination and usage are more precise, more rigorous and more efficient than ever before.

NHS data is internationally unique

The impact of flowing health data faster for appropriate uses can be extraordinary. NHS data is internationally unique in its breadth and depth and, used responsibly, it can save lives. Extraordinary research breakthroughs have been possible thanks to NHS data, such as the identification of the impact of dexamethasone in COVID-19 treatment. This was a finding of the RECOVERY Trial, led by Oxford University, supported by NHS Digital, and ultimately enabled by patients, families, clinicians and researchers across the country.

Data that has the power to save lives must be put to greater use, with absolute diligence in the management of its use.

Supporting the planning and delivery of efficient health and care services through rich, high-quality, timely data insights is equally critical, particularly when the system is under great pressure.

As we look back on the last six months, there is much to learn. We need clearer legislation and more efficient processes to enable appropriate data usage within the health and care system and for medical research.

Data that has the power to save lives must be put to greater use, with absolute diligence in the management of its use. Efficient and rigorous information governance, combined with transparency, earns us the trust of our citizens so that we can serve them better.

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Sarah Wilkinson

Sarah Wilkinson is CEO of NHS Digital, the executive body of the Department of Health which provides information, data and IT systems for health and social care nationally.

In each of the last four years Sarah has been named within the top ten in the TechUK 50, Computer Weekly’s annual ranking of the Top 50 Most Influential Leaders in the UK IT Industry. She was named Chief Digital Officer of the year in 2017 by the CDO Club, the world’s largest community of C-suite digital and data leaders. In 2016, she was named in the CIO 100, CIO Magazine’s ranking of the most transformative and disruptive CIOs in the UK.

She lives in Wimbledon with her husband and two teenage sons.

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Last edited: 28 September 2020 11:08 am