Medical Records: Data Protection

Department of Health and Social Care written question – answered on 7th August 2019.

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Photo of Lord Freyberg Lord Freyberg Crossbench

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, published on 15 July, what is meant by "fair terms" for (1) NHS organisations, and (2) the NHS as a whole.

Photo of Lord Freyberg Lord Freyberg Crossbench

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”.

Photo of Lord Freyberg Lord Freyberg Crossbench

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, whether, in referring to NHS organisations, national NHS organisations, pertinent departments and arms-length bodies are required not to enter into “exclusive arrangements for raw data held by them”.

Photo of Baroness Blackwood of North Oxford Baroness Blackwood of North Oxford The Parliamentary Under-Secretary for Health and Social Care

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.

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