NHSX will be responsible for overseeing data-sharing agreements with industry partners under new guidance from the Department of Health and Social Care.
The new guidance establishes key principles around the use of sharing data for commercial purposes.
This includes excluding NHS organisations from entering commercial agreements that grant one organisation exclusive use of raw NHS data, echoing comments made by Simon Stevens to NHS organisations in June.
NHSX – the new unit tasked with overseeing NHS digitisation – will be responsible for ensuring that commercial deals deliver “benefits for patients and the NHS.”
This includes providing legal and technical guidance to NHS organisations, developing standard contracts and assessing the value of proposed data-sharing agreements.
Governance will be provided out of a new “National Centre of Expertise” – known as “The Centre” – which will sit in NHSX.
The Department of Health and Social Care (DHSC) will begin a recruitment process for Head of the Centre and “other key personnel” over the next few months.
The updated guidance comes ahead of a more detailed policy framework due to be published later this year.
The five “guiding principles” set out in the latest policy update include:
- Any use of NHS data, including operational data, not available in the public domain must have an explicit aim to improve the health, welfare and/or care of patients in the NHS, or the operation of the NHS. This may include the discovery of new treatments, diagnostics, and other scientific breakthroughs, as well as additional wider benefits.
- Where possible, the terms of any arrangements should include quantifiable and explicit benefits for patients which will be realised as part of the arrangement.
- NHS organisations entering into arrangements involving their data, individually or as a consortium, should ensure they agree fair terms for their organisation and for the NHS as a whole. In particular, the boards of NHS organisations should consider themselves ultimately responsible for ensuring that any arrangements entered into by their organisation are fair, including recognising and safeguarding the value of the data that is shared and the resources which are generated as a result of the arrangement.
- Any arrangements agreed by NHS organisations should not undermine, inhibit or impact the ability of the NHS, at national level, to maximise the value or use of NHS data. NHS organisations should not enter into exclusive arrangements for raw data held by the NHS, nor include conditions limiting any benefits from being applied at a national level, nor undermine the wider NHS digital architecture, including the free flow of data within health and care, open standards and interoperability.
- Any arrangements agreed by NHS organisations should be transparent and clearly communicated in order to support public trust and confidence in the NHS and wider government data policies.
- Any arrangements agreed by NHS organisations should fully adhere to all applicable national level legal, regulatory, privacy and security obligations, including in respect of the National Data Guardian’s Data Security Standards, the General Data Protection Regulation (GDPR) and the Common Law Duty of Confidentiality.