The UK Government has announced a new framework on how the NHS shares data with researchers and innovators, and a new National Centre of Expertise to provide specialist advice and guidance to the NHS on agreements for use of data.
The Department of Health and Social Care’s guidance published on Monday provides a framework that aims to help the NHS realise benefits for patients and the public where the NHS shares data with researchers.
NHSX to host Centre of Expertise
The Centre will:
- Provide commercial and legal expertise to NHS organisations – for potential agreements involving one or many NHS organisations, such as cross-trust data agreements or those involving national datasets.
- Provide good practise guidance and examples of standard contracts and methods for assessing the “value of different partnership models to the NHS”.
- Signpost NHS organisation to relevant expert sources of guidance and support on matters of ethics and public engagement, both within the NHS and beyond.
- Build relationships and credibility with the research community, regulators, NHS and patient organisations, including developing “insight into demand” for different datasets and “opportunities for agreements that support data-driven research and innovation”.
- Develop benchmarks for NHS organisations on “what ‘good’ looks like in agreements involving their data”, and setting standards on transparency and reporting.
The full policy framework document underpinning the Centre’s functions will be published later this year, with plans to recruit for the Head of the Centre over the coming months to enable it to commence work this year.
Five principles to support the use of data driven innovations in the NHS
- Any use of NHS data must have an “explicit aim” to improve the health, welfare and/or care of patients in the NHS, or the operation of the NHS, such as: the discovery of new treatments, diagnostics and other scientific breakthroughs. And 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”. Boards of NHS organisations “should consider themselves ultimately responsible for ensuring that any arrangements entered into by their organisation are fair”.
- 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 to support public trust and confidence in the NHS.
- Any arrangements agreed by NHS organisations should fully adhere to all applicable national level legal, regulatory, privacy and security obligations, including the National Data Guardian’s Data Security Standards, the General Data Protection Regulation and the Common Law Duty of Confidentiality.
Data agreements going forward
This latest iteration of the principles should be factored into decisions taken by the NHS and partners when entering into data agreements.
But NHS organisations are reminded that agreements should not be entered into which “grant one organisation sole (exclusive) right of access to or use of raw NHS data, either patient or operational data”.
The principles are intended to cover two types of agreements those:
- involving data entered into by all NHS organisations, at the primary (GPs), secondary and tertiary care levels, including relevant data from organisations contracted and funded to deliver NHS services; and
- involving a commercial partner or where the outputs could be commercialised, regardless of the type of organisation the NHS is partnering with.
The department plans to publish another iteration of the principles in a new policy framework later this year.