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Medical Records: Data Protection

Question for Department of Health and Social Care

UIN HL17459, tabled on 24 July 2019

To ask Her Majesty's Government, in respect of its guidance Creating the right framework to realise the benefits for patients and the NHS where data underpins innovation, which organisation or body will hold to account the boards of NHS organisations in 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”.

Answered on

7 August 2019

As set out in the recently published guidance Creating the right framework to realise the benefits for patients and the NHS where data underpins innovation, the Centre of Expertise will offer support to those National Health Service organisations seeking to understand whether proposed data arrangements meet the requirements set out in the five guiding principles. The Centre of Expertise will sit in NHSX. The requirement that terms are agreed which are fair to both an NHS organisation and the wider NHS, is included to ensure, for example, that local NHS trusts consider arrangements which can provide benefits to the whole NHS, not just to an individual trust. This may include a NHS trust providing access to anonymised healthcare data for development of a healthcare product in return for access at a reduced cost to that product for the whole NHS, not just that particular trust. Fair terms should ensure that benefits returned to NHS organisations and the NHS as a whole are commensurate with the outputs that are generated by the data partner. The principles are intended to apply to all NHS organisations at the primary, secondary and tertiary care levels, including national NHS organisations. However, we will consider the inclusion of arm’s length bodies as part of the next phase of work in developing a full policy framework.

Answered by

Department of Health and Social Care