UK patients to have greater control over healthcare data

UK patients to have greater control over healthcare data
© iStock/sdecoret

The UK has established a new data strategy that will give patients better access and greater control over their health and care data.

The way data is used across health and care sectors is set to be transformed, giving patients control of their health data and enabling staff to save more lives through improved care and treatment.

The new draft strategy, ‘Data saves lives: reshaping health and social care with data’ published by NHSX, builds on the groundbreaking use of data during the COVID-19 pandemic, with privacy and security of data at its core.

Patients will have easier access to their test results, medication lists, procedures, and care plans from across all parts of the health system through patient apps, such as the NHS App. Records will also be shared between systems to allow faster and more specialised treatment

Breaking down data barriers

The strategy aims to break down data barriers and give patients confidence that health and care staff have up-to-date medical information, regardless of the care setting, enabling clinicians to make quicker, more informed decisions to deliver better treatment.

Health and Social Care Secretary, Matt Hancock, said: “Data saves lives. More effective use of data will deliver better patient-focused care. It will free up staff time to focus on patients and allow clinicians to make better, more informed decisions on treatment and support. The pandemic has taught us we must be bold and the great strides we have made on vaccines and treatments during this time have been made possible by the way we use data.

“This strategy seeks to put people in control of their own data, while supporting the NHS in creating a modernised system fit for the 21st century which puts patients and staff in pole position.”

For easy access to patient health and care data, the strategy proposes a new duty to share anonymous data safely and appropriately across the entire health system.

Additionally, new legislation will be introduced to require all adult social care providers to provide information about all the services they fund to ensure service users have the best care and experience.

Better use of data

The strategy proposes better use of personal data to analyse key trends in the health of the nation to improve services and prepare for and respond to future diseases.

Minister for Innovation, Lord Bethell said: “The safety of the public will only be improved if the health and care system makes better use of data. We have already seen how analysing patient data on maternity outcomes has improved care for mothers and babies. Greater sharing of patient information across the health and care system will undoubtedly go on to drive further improvements in patient safety, ultimately saving lives.”

Proposals

The draft strategy sets out several proposals to improve patient care and data sharing, including:

  • Putting patients at the heart of their health and care data, with easy access to their own healthcare records
  • Giving health and care staff easier access to the right information
  • Enabling the proportionate sharing of data for the purpose of supporting the health and care system
  • Giving adult social care high quality, timely, and transparent data
  • Modernising data architecture and infrastructure underpinning the health and care system to improve standards, protect data, and stay ahead of cyber risk
  • Supporting innovation for the benefit of patients and staff, such as empowering patients to test and monitor changes in their vision remotely using an app, and using AI to assess data from care home workers’ reports
  • Building on improvements to speed up access to data during the pandemic, where there is clear benefit for the system as a whole

Matthew Gould, NHSX Chief Executive, said: “Throughout the pandemic, we saw examples of data improving care and saving lives – from the speed of vaccine development to the discovery of treatments for COVID-19. If we want to continue improving care, we need to transform how we use data.

“Patients need to own their data, have access to their data, and have confidence on how the NHS is handling it on their behalf. This strategy takes this agenda firmly forward, and is good news for patients, staff, citizens, and anyone who cares about the future of the NHS.”

Public engagement, to be held in 2021, will be used to inform how people would like to use and access their data, including working with the National Data Guardian, patient groups, and system leaders.

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