National Data Guardian responds to DHSC’s data saves lives strategy

The National Data Guardian has submitted a response to the Department of Health and Social Care’s call for views on its draft data strategy, Data Saves Lives: Reshaping health and social care with data.

The Department of Health and Social Care and NHSX Data Saves Lives policy paper aims to set out priorities and commitments on how data is used and shared, and the underlying standards and infrastructure.

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 was recently released ahead of wider public and stakeholder consultation, in which National Data Guardian’s responded ‘in a spirit of constructive challenge’.

Split across seven chapters, the strategy covers: 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.

The response from the National Data Guardian ‘strongly supports’ and ‘commends’ the strategy’s ambition to improve the nation’s wellbeing through data use, however, it also highlights areas where further engagement to understand public perspectives is needed and where further consideration is required.

The feedback covers three themes; ‘safeguarding patient confidentiality’, ‘reinforcing the importance of building public trust’ and ‘ensuring that people understand how their data is used’.

The National Data Guardian’s response notes: “The strategy should provide a clearer explanation of how people will be afforded increased control over their data. Being more transparent about data use does not equate to giving people greater control over the use of that data.”

It also highlights the need to review the commitments made, focusing on the language that’s used requiring clarification. The response states: “The strategy’s use of language regarding ownership requires clarification. The public owning their data implies a number of rights which are commensurate with ownership, which are not present with regard to health and social care data processed by health providers. The language of ownership does not seem to reflect the direction of the data strategy, which defines ‘control’ in terms of ‘rights of access’ as opposed to terms of ‘ownership’.” A call for how opt out mechanisms work in practice is also noted.

In the strategy, the UK Government pledges a commitment to publish the first transparency statement setting out how health and care data has been used across the sector by 2022. However the National Data Guardian response calls for clarity to how “it will provide opportunities to bring people closer to their data where people do not, or are unable to, engage with the digital world.”

The response also continues to seek greater clarity around the proposal for legislative change, and notes the need to “provide clarity on the application of existing legal obligations to share information for direct care for health and social care” and “address the practicalities of new legal concepts such as sharing anonymous information and the standards which will need to be met.”

In the strategy, commitments are made that include to agree target data architecture for health and social care, outlining how and where data will be stored, shared and sent, by the end of the year. 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 and 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.

To view the data saves lives: reshaping health and social care with data (draft) strategy please click here. To view the National Data Guardian’s response, please click here.