Demographic data collection, facilitated by EDGE, allows NHS organisations to fulfil their duty of care to patients enrolled in clinical studies. The Research Governance Framework section 3.10 states that:

"It is the responsibility of organisations providing health or social care in England to be aware of all research undertaken in their organisation, or involving participants, organs, tissue or data obtained through the organisation."

The Information Commissioner’s Office has confirmed that Schedule 3(8) is likely to be an applicable condition for the collection and processing of the EDGE patient data set.

Although the condition for processing outlined in Schedule 3(1) (“explicit consent”) of the DPA is likely to be impractical, this does not remove the overarching requirement of fairness under the First Principle of the DPA. In general, this means ensuring individuals are aware of how their data will be used. This is usually provided to individuals by way of a “fair processing notice” or “privacy notice” when their personal data is first collected. Organisations should, as a matter of routine, provide a generic statement on their public website or via leaflets on data handling and processing in their organisation.

To access our Information Governance White paper please click the following link:

IG White Paper

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