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.