Opt-Outs

This page doesn’t include the forthcoming changes related to the National Data Opt-Out and the extent to which this applies to the UKRR’s s251 collections.

Patients can ask that their identifiable data not be sent to the UK Renal Registry by registering their preference with their Renal Unit (We are exempt from the National Data Opt-Out). To allow this there must be a way to record this preference in the Renal System and for the UKRDC extract to then anonymise the extract. The exception to this is where the patient has also given individual consent to participate in a project which uses the UKRDC as its source of data (PKB, RADAR, SIMPLIFIED, etc.). In this case their identifiable data should still be sent, with the addition of an OptOut record recording their preference. When the data is extracted from the UKRDC for UKRR purposes the identifiable information will be removed.

Anonymisation

Name	XML Path	Required Value
Surname	PatientRecord/Patient/Names/Name/Family	“CONSENT”
Forename	PatientRecord/Patient/Names/Name/Given	“REFUSED”
Date Birth	PatientRecord/Patient/BirthTime	01/01/YYYY where YYYY is their actual birth year.
Street	PatientRecord/Patient/Addresses/Address/Street	[BLANK]
Town	PatientRecord/Patient/Addresses/Address/Town	[BLANK]
County	PatientRecord/Patient/Addresses/Address/County	[BLANK]
Country	PatientRecord/Patient/Addresses/Address/Country	[Actual Value]
Post Code	PatientRecord/Patient/Addresses/Address/PostCode	[Outward Code]
Contact Details	PatientRecord/Patient/ContactDetails	[Do not Send]
Country of Birth	PatientRecord/Patient/CountryOfBirth	[Actual Value]
Person to Contact	PatientRecord/Patient/PersonToContact	[Do not Send]
MRN	PatientRecord/Patient/PatientNumbers/PatientId	[Send UID Value Instead]
UID	PatientRecord/Patient/PatientNumbers/PatientId	[Send UID as a National Identifier]
NHS/CHI/HSC Numbers	PatientRecord/Patient/PatientNumbers/PatientId	[Do not Send]
Documents	PatientRecord/Documents	[Do not Send]

This is not an exhaustive list and sites/suppliers are expected to be aware of any fields in their system that may be being used to record identifiable information and to handle them accordingly.

Local Opt Out

If the Patient has recorded a local Opt-Out an “Opt-Out” record should be sent as part of their RDA file.

Name	XML Path	Required Value
Program Name	Patientrecord/OptOuts/OptOut/ProgramName	UKRR
FromTime	Patientrecord/OptOuts/OptOut/FromTime
ToTime	Patientrecord/OptOuts/OptOut/ToTime
ExternalId	Patientrecord/OptOuts/OptOut/ExternalId	[Renal System Local ID]

If a patient changes their mind and chooses not to opt out the record should be end dated.

If they later give they choose to opt out again a second opt-out record with a new FromTime and different ExternalId should be created.