The Department of Health and Social Care and NHSX have published a draft policy document, data saves lives: reshaping health and social care with data, aiming to set out priorities and commitments on how data is used and shared, and the underlying standards and infrastructure.
The strategy highlights ‘bold commitments’ such as separating data from the underlying application and further supporting people to see all of their own data.
It’s underpinned by three priorities: to build understanding on how data is used, the potential for innovation and for the public to have greater control over their data; to make appropriate data sharing the norm; and to build the right technical, legal, regulatory foundations.
The proposed strategy has been released ahead of wider public and stakeholder consultation, with an online survey to open for feedback shortly. The strategy will then be finalised and published later in 2021.
Split across seven chapters, the strategy covers many topic areas: bringing people closer to their data, giving health and care professionals the data they need, supporting local and national decision makers, improving data for adult social care, empowering researchers with the data they need to develop life-changing treatments, models of care and insights, helping colleagues develop the right technical infrastructure, and helping developers and innovators to improve health and care.
For patients, the strategy sets out an aim to ensure digital access to health and care information, including test results, medications, procedures and care plans from across all parts of the system. It outlines systems must enable patients to have the ability to manage appointments, medications, and communicate with health and care staff, including the ability to share additional data such as sleep, food, exercise, and genome data.
As part of the document, NHSX notes its commitment to publish a transparency statement to outline how health and care data has been used across the sector by 2022 and to lead a ‘Health and Care Information Governance Panel’ to develop guidance, frameworks and standards such as data sharing and transparency, with an aim to improve the public’s confidence of how data is handled by December 2021.
For health and care teams, the priority outlined is to ensure all staff have up-to-date information, regardless of the care setting they are in.
The strategy also highlights: “We must also look to the development of new advances in how data is collected, stored and analysed, and we already work with de-identified, anonymised and pseudonymised data which helps us maintain people’s privacy. We must continue this work including with new privacy enhancing technologies that support keeping personal information safe. As noted by the Centre for Data Ethics and Innovation.”
To support information governance, NHSX plans to build on its portal to provide a ‘one-stop shop for help and assistance, guidance and advice’, and develop e-learning tools by December 2021. It also plans to work with the Health and Care Information Governance Panel, to create rules around different types of data (such as pseudonymised), and so that healthcare professionals can understand these rules around the use of data by April 2022. It also plans to form a national information governance strategy by the same time.
One commitment is to create legislative change, to create a statutory duty for organisations within the health and care system to share anonymous data for the benefit of the system as a whole.
The strategy also outlines commitments to scale-up home care, rationalise what data is collected, integrate social care data and accelerate the adoption of digital social care records, develop the analytics skills of the workforce, and progress towards creating at-scale data assets that bring together different types of health data to develop new tools for prevention, diagnostics and clinical decision-support by 2023.
By winter 2021, a commitment has been set to agree a target data architecture for health and social care outlining how and where data will be stored, shared and sent. This includes by March 2022 understanding the ‘technical debt for national systems’, and to prioritise what must be addressed and completed.
It also includes commitments to provide services to find and retrieve records from wherever they are located across health and social care by spring 2022. By March 2022, another commitment is to develop APIs that can be accessed over the internet to access clinical systems, web pages and apps, and for patients and clinicians to access patient data, underpinning the creation of the NHS Account.
In terms of interoperability, NHSX will “develop and publish the standards and interoperability strategy to get fit-for-purpose standards widely adopted across health and adult social care (March 2022)” and “introduce legislation in due course to create a power for the Secretary of State for Health and Social Care to mandate standards for how data is collected and stored, so that data flows through the system in a usable way.”
It also plans to develop a core of UK-wide Fast Healthcare Interoperability Resources profiles to be the foundation for new standards by November 2021.