A single data strategy to unite the system and save more lives

Our strategy “Data Saves Lives: Reshaping Health and Care with Data” is published today. It sets out a clear vision and a powerful action plan to create a truly 21st century health and care system which is even more efficient, responsive, personalised and ultimately safer. Simon Madden, Director of Policy and Strategy at NHSX explains where it has come from and the next steps.

For years, we have used data about health conditions such as cancer and diabetes, about hospitalisations and from primary care to help better understand and develop cures for serious illnesses and to plan the most effective services for the NHS.

But COVID-19 has shown that more timely access to high quality data has the potential to tackle many more health problems and save many more lives. The temporary Control of Patient Information regulations and cultural change that was required to provide unprecedented access to data at speed has set in motion seismic shifts in practice within the NHS and social care. Our strategy reflects that.

This use of data has driven innovative technology that has transformed ways to care for our citizens and keep them safe, often remotely. We have tracked the spread of the virus using the NHS COVID-19 Data Store and put ventilators and oxygen where they are needed so that no hospital has run out. We have built tools that enable hospitals to anticipate demand weeks in advance and put plans in place to rise to the challenge. Wider access to enhanced summary care records have dramatically improved the speed at which clinicians and care providers can access potentially life-saving information about those in their care. And in parallel we have started a simplification process for information governance guidance that will build staff confidence around appropriate data sharing for the public good. As the National Data Guardian recently said, the need for that clarity is perhaps one of the most important lessons overall.

Improved access to GP data in a safe and effective way has been particularly useful during this time. It has helped to identify those most vulnerable to coronavirus so that we could support them to shield, it has supported the roll out of our national vaccine delivery, and has been critical for COVID-19 research; including the University of Oxford’s RECOVERY trial, which identified dexamethasone - a drug that has saved over a million lives worldwide.

Research by the National Data Guardian and the ODI has shown that people largely support how data has been used during the pandemic and that there are very high levels of trust in the NHS to do the right thing.

People are more openly and positively engaged in the use of their data than ever before. The public at large have become used to following the daily updates on the GOV.UK coronavirus dashboard. They have used data to make decisions for themselves that keep them well such as by checking infection rates in their area via NHS Digital’s Coronavirus in your area dashboard. They have been active and willing participants in sharing their data in the greater public interest, as highlighted in the National Data Guardian’s report ‘Putting good into practice’. In setting up their study into the spread of COVID-19 across the UK, Biobank were overwhelmed at the response: with over 116,000 individuals volunteering to take part in the study, and The King’s College London COVID Symptom Study boasts of over 4 million participants globally.

We welcome this public interest and support. A key strand of our strategy is bringing people closer to their data and making them real partners in their care. This means being able to access their own records; using information about services to choose the best care for them or hold services to account; or actively sharing data remotely so that they can be treated in the comfort of their own home.

Patient data is a precious resource and is gifted to the NHS on the understanding that it will be protected and used for the common good in line with the values set out in the NHS Constitution. Using people’s data securely and responsibly has always been a priority for the health and care system. Trust must be at the forefront of our work, and it is dependent on fair, open and balanced discussion. This strategy gives us the opportunity to bring people with us as we look to the future beyond COVID-19.

Today’s publication is an open invitation to a national and ongoing public conversation on some of the big issues that we know really matter to people - who gets access to their data, the choices they have, and how the system models the transparency and trustworthiness they expect. We are publishing the strategy in draft so we can hear what people think before we publish a final version later in the year. We are going to hold regional public engagement events over the next year to find out how people would like to use and access their data. And we also commit to publish the first transparency statement setting out how health and care data has been used across the sector by 2022. Longer term, the strategy contains specific commitments that will increase public awareness and involvement in decisions about how data is used. This is only the first step in our continuing engagement with the public, not the last.

While the strategy is unapologetically bold, it is both timely and necessary if we want to lock in the beneficial changes and lessons learned from the COVID-19 pandemic. We have had to think beyond data to the technology that relies on it to drive innovations that improve care; to the technology that can improve the way data is used, accessed, stored and protected. To this end, I am grateful to the many organisations and people who have contributed their thoughts, advice and experience to inform the strategy so far.

Successful delivery now relies on the trust, support and confidence of both our staff and the people they care for. We have set out our stall - a high level direction of travel - but there are still more steps on this journey; so much work to be done to meet our commitments and so many different ways to approach implementation. So please read the strategy and tell us what you think: complete our survey and help the NHS to use data to save more lives.