In June 2021, NHSX published 'Data saves lives: reshaping health and care with data'. The draft strategy outlines Government’s intentions for how the NHS and social care in England will collect, store, use and share administrative and clinical data over the next three years.
We submitted a response to the draft data strategy in September 2021.
Three key priorities underpin the strategy:
- to build understanding on how data is used and the potential for data-driven innovation, improving transparency so the public has control over how their data are used
- to make appropriate data sharing the norm and not the exception across health, adult social care and public health, to provide the best care possible to citizens, and to support staff throughout the health and care system
- to build the right foundations - technical, legal, regulatory - to make that vision possible.
Theme 1: bringing people closer to their data
The strategy aims to:
- enable patients to access clinical and administrative information held about them
- simplify how patients speak with health and care staff - patients have historically been too far removed from the information that is held about them and have not been partners in their own care
- bring patients closer to their data, including through making better use of digital channels and methods of communication
- enable patients to write into their record with the ability to share additional user-collected data including sleep, food, exercise and genomic information.
Theme 2: giving health and care staff the data they need
The strategy prioritises health and social care staff having access to the right information at the right time. This is based on the understanding that delivering care relies on fast access to data that is accurate, reliable and joined-up.
Some improvements were necessitated by the pandemic, including information governance guidance to support staff, the control of patient information notice and the single front door for access to data from NHSE/I and X for COVID-19 response purposes.
The strategy outlines further improvements including:
- simplifying information governance
- creating a new duty to share data
- delivering shared records
- reducing the data collection burden
- harnessing safe and effective innovation.
Theme 3: supporting local and national decision makers with data
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Theme 4: improving data for adult social care
Theme 5: empowering researchers with the data they need
The strategy argues that England’s clinical research sector could be strengthened further still if researchers had better access to healthcare datasets, in safe environments where patient privacy is not compromised.
Better access, NHSX believes, means higher quality research, which could mean the discovery of better healthcare pathways and new clinical options.
The Government is looking at new technological advances in how data is collected, stored, and analysed, to create trusted research environments.
The former secretary of state for health commissioned a rapid review into the more efficient and safe use of health data for research and analysis, including how access to data can be better facilitated.
Alongside the review, the Government is investing in improving the quality and accessibility of at-scale data assets that make the most of the UK’s health and care data.
Theme 6: helping colleagues develop the right technical infrastructure
The strategy emphasises that data-driven technologies must be supported by the right unified infrastructure based on open data standards and improved interworking.
The objective is to create national platforms that can be easily used by leaders in health and adult social care, to access and share data via a national gateway, rather than through individual electronic record systems.
Work will start with trusts and ICSs to understand the potential impact of the modernisation of the data structure on current plans.
Theme 7: helping developers and innovators to improve health and care
The Government intends to speed up data-driven innovation through data partnerships and collaboration between health and care partners, academia, and industry.
This will be supported through clear frameworks, standards and guidance on data use to ensure the highest level of data protection.
The following steps will be taken to support developers and innovators:
- drive interworking for innovation
- encourage AI (artificial intelligence) innovation
- develop clear and understandable AI regulation
- support innovators to work with health and care organisations
- create fair returns in data partnerships.