As the data flows…
The data collection processMatthew Jones (Southend Renal Unit)
David Bull (Renal Registry)
Who does what? (The Southend model)
• All staff – Day to day treatment data and modality
• Consultants – Primary Diagnosis, Drugs and Co-morbidity data
• Specialist staff / teams– Anaemia– Access– Transplant– Phosphate
• System manager– Provides quarks for staff to run to self audit– Provides missing data reports – Co-ordinates answering missing data reports from Renal Reg
Its everybody's job, everyone is responsible.
Routine Stuff
• Run a query against the database for the previous quarter to look for missing data
• Report given to consultant running Clinic to highlight missing data
--------------------------------------------------------------------------------XXX XXX XXXX U000001 BUILDER Bob Mon1 Wed1 Fri1 DeceasedDate of Death = 22.12.11CAUSE OF DEATH missing CHANGE OF STATUS Date *>Status *Timeline event22.12.2011 Deceased Death13.03.2005 In-centre HD Change in treatment status--------------------------------------------------------------------------------##########################################################################--------------------------------------------------------------------------------XXX XXX XXXX U000002 PATIENT Test Mon2 Wed2 Fri2 In-centre HDDate first seen =Primary Diag = Pyelonephritis/Interstit. nephritis-other cause (spe/29 CHANGE OF STATUS Date *>Status *Timeline event09.12.2011 In-centre HD Change in treatment status04.02.2010 Clinic Change in treatment status21.10.2009 LC Clinic Change in treatment status27.05.2009 Clinic Registration--------------------------------------------------------------------------------
Date of Clinic : Friday 27.04.2012 MKA5R-------------------------------------------------------------------------------XXX XXX XXXX U000001 Patient PATIENT Mon1 Wed1 Fri1 In-centre HD There is no record of this patient being considered for transplantPlease record their list status (even if not listed) by going toPAT UPDATE -> TREATMENT -> TRANSPLANT -> PRE TX -> List Status
Annual Review of Co-Morbid Data is due within 90 days, pleaseenter data Current Drugs List (as of 24.04.2012 11:57)19.03.08 NOVORAPID FLEXPEN 10 14.000unit TDSSC19.03.08 LEVEMIR FLEXPEN 100i 8.000unit NIGHTSC05.01.09 GABAPENTIN 100mg cap 200.000mg ON Oral21.01.11 RAMIPRIL 10mg capsul 10.000mg D Oral25.01.12 Osvaren 435mg + 235m 1.000tabs TDSOral10.02.12 EPREX 2000iu/0.5mL p 2000.000unit 2 X WEEKLYIV13.02.12 CALCIUM CARBONATE 1. 1.000gm PRN (TUMS)Oral-------------------------------------------------------------------------------
One Off’s
• Spot audits– Eastern Region Anaemia audit– Internal audit
• Transplant• Anaemia • Infection• Access
Data extract time!
• The Renal Reg numbers from the last quarter need to be uploaded (if not already done)
• Hit the button and run the extract (takes about 10 min to run on our system)
• Find the resulting file and email via NHS-mail to the RenalReg
• Sit back with cup of tea
File Transfers & Information Governance
There are 3 methods of transferring data to & from UKRR:
– NHS.net email– NHS Wales Informatics Service's Secure File
Sharing portal (surprising only available for Welsh units)
– Encrypted file (PGP) via non-NHS.net email
Once the data is received
• It is decrypted
• It is reformatted (‘cracked’)
• It is validated
Once validated
• The output from the validation process is reviewed• Data returned in previous quarters but not this quarter –
is there a problem with mapping?• Information on data completeness is returned to the unit• A list of queries is sent to the unit for resolution e.g.
missing causes of death, – Note: please do not send in another extract that includes your
amendments as your original extract will have had corrections/amendments (which we do not need to contact you about) made to it during the RR validation process.
Missing data / error report
• Data Completeness– Are there any areas that are unexpectedly low/high?– Are there areas that we could improve through mapping or
targeting data collection?
• Review the patients listed– Is this an actual patient or can they be removed?– Who is best to find missing data? (Me )
• Timeline stuff – Pull notes or looks a Electronic Documents (Clinic letters since 2008)
• Primary Diagnosis – notes or ask consultant• Consult specialist staff if in their area• Cause of death from electronic discharge summary if in hospital.
From end of life pathway co-ordinator if in the community
Corrections/amendments are received by the RR from the unit
• The corrections/amendments are made to the extract previously sent to the RR
• Patient addresses are validated & corrected where necessary (for RR use only)
• The data is loaded onto the RR database• A file of RR numbers is produced which is
returned to the unit for loading onto their system
End of year
• Further checks are performed at year end:
• Numbers for Stock, Take on & Deaths are compared with previous years – you may be asked to confirm these totals
• Patient ‘ownership’ is determined
• Data integrity checks are performed
Conclusions
• RR need to engage with the units.
• The units need to engage with the RR.
• “Engagement of whole multidisciplinary team” does not mean telling a nurse to do it.
• Check data early, check often.
• ‘Incorrect’ data leads to ‘incorrect’ analyses.