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At present the following items are currently sent to PKB, matching what was available in the “PV XML” feed.
LabOrders / ResultItems
There should be a way to record that a patient has joined PKB in the renal system. Whereas with the old “PV XML” feed this was typically done as a single checkbox we would suggest that the system record each program the patient participates in separately.
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There are some tests which are displayed in PV which are not in the UKRR dataset. These are listed in a table at the bottom of the Result / Observation page. They should be sent using a Coding Standard of “PV”. If there are any other tests which your patients would like displayed in PKB please let us know.
RaDaR
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Version 3 of RaDaR is currently under development. The expectation is that it will use more of the data being requested for UKRR patients but nothing beyond that. |
Same as with PKB.
UKRR
We suggest that to approach this you look in the UKRR V5 dataset and for each item you intend to submit look at the “UKRDC / RDA Mapping” column in the worksheet. This will show you which element in the schema needs to be populated for that item.
Some parts require special mention -
Renal Diagnosis / Cause of Death
In order that this data is comparable with that collected by other members of the European Renal Association we ask that units select from the picklist in the UKRR dataset. These codes, as well as SNOMED equivalents can be found here. Where appropriate the BiopsyProven item should be used to indicate whether one was performed.
The DiagnosisType should be set to PRIMARY/SECONDARY as appropriate.
Diagnosis / Renal Diagnosis
If a patient is given a new diagnosis which replaces the previous one we would like VerificationStatus to be set to “Refuted”. This diagnois should then continue to be sent alongside the new one. We are aware though that many renal systems will not be capable of doing this.
Treatment
The Treatment entries should be similar to what was sent in the TXT entries in the quarterly files.
Basically they’re meant to represent a period of time that a patient was under the care of a hospital for the purpose of receiving a particular type of care.
They’re not meant to represent individual out-patient spells with the possible exception of someone having a transplant procedure.
So for example –
FromTime – 01/01/2000
ToTime – 01/01/2001
AdmitReasonCode = 900 (CKD)
HealthCareFacilityCode = REE01
FromTime = 01/01/2001
ToTime = 01/01/2002
AdmitReasonCode = 1 (HD)
HealthCareFacilityCode = REE01
FromTime = 01/01/2002
AdmitReasonCode = 29 (TX)
HealthCareFacilityCode = REE01
AdmitReasonCode is Modality, HealthCareFacilityCode is Treatment Centre. If the patient has Transferred-In from another Renal Unit AdmissionSource should be populated, ideally with the code of the unit or 995/ABROAD if unknown.
Where possible/applicable DischargeReasonCode should be populated with one of these Modalities ( https://github.com/renalreg/resources/blob/master/schema/ukrdc/Types/CF_RR7_Discharge.xsd ) .
Where the code indicates that the patient has “Transferred Out” then DischargeLocationCode should be populated, again ideally with the code of the Unit they are going to or 995/ABROAD if unknown.
A possible idea for the future is that DischargeReasonCode may also be used to record things such as the reason a patient changes from HD to PD etc. that we tried to capture in V4 but that will be something for beyond V5.
Opt-Outs
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.
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For V5 this includes the following items in addition to what is required by PKB/RADAR:
Under our s251 approval the UKRR has permission to collect all information which is relevant to our Audit work. This means that whilst we only require sites to collect the information from the V5 dataset we would appreciate it if Sites/Systems would a) continue to send items from V4 if they are being recorded in the renal system anyway and b) would send Any Results, Diagnoses, Observations etc. being held in the Renal System even if they are not ones which we specifically ask for. If there are any gaps in our code lists please let us know.
UKRR Quarterly Extract
The UKRR will generate a quarterly file for each site from the UKRDC. This will be to the V4 specification and validated using the existing processes. Feedback will be given by the Data Managers and Units should provide information to the UKRR Data Manager then make any corrections which are required in the renal system, so the updated data is sent to the UKRDC. We will then produce new versions of the quarterly file as required.
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