UKRDC Dataset

OptOut

 

UKRR: This is required for V4 & V5 of the UKRR Dataset.

 

As with the UKRR Quarterly Collection our approval to collect data under s251 without individual patient consent requires that patients be given the opportunity to Opt-Out.

Where this happens an Opt-Out record should be sent to the UKRDC to record where this happens. The demographics should also be removed unless the patient has joined one of the individually consented programs (such as PKB, RADAR, SIMPLIFIED). In this situation we will remove the demographics at the point we extract the data from the UKRDC. More details can be found here.

 

ProgramName should be set to “UKRR”.

 

 

These records are used to record where a patient has asked to Opt Out of their data being used for a particular purpose. This will usually (but potentially not always) be where inclusion would otherwise be assumed due to s251 permissions etc.

Please see the UKRR OptOut section for further details on how to implement this.

 

Schema

Schema OptOut (github)

Example

<OptOuts> <OptOut> <EnteredAt> <CodingStandard>UKRR</CodingStandard> <Code>RR1+</Code> <Description>Demonstration Entries</Description> </EnteredAt> <ProgramName>UKRR</ProgramName> <ProgramDescription>UK Renal Registry</ProgramDescription> <FromTime>2018-06-25</FromTime> <UpdatedOn>2018-06-25T07:24:31</UpdatedOn> <ExternalId>50889490</ExternalId> </OptOut> </OptOuts>