As the data flows…

1. As the data flows… The data collection process Matthew Jones (Southend Renal Unit) David Bull (Renal Registry)

2. 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.

3. 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 Deceased Date of Death = 22.12.11 CAUSE OF DEATH missing CHANGE OF STATUS Date *>Status *Timeline event 22.12.2011 Deceased Death 13.03.2005 In-centre HD Change in treatment status -------------------------------------------------------------------------------- ########################################################################## -------------------------------------------------------------------------------- XXX XXX XXXX U000002 PATIENT Test Mon2 Wed2 Fri2 In-centre HD Date first seen = Primary Diag = Pyelonephritis/Interstit. nephritis-other cause (spe/29 CHANGE OF STATUS Date *>Status *Timeline event 09.12.2011 In-centre HD Change in treatment status 04.02.2010 Clinic Change in treatment status 21.10.2009 LC Clinic Change in treatment status 27.05.2009 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 transplant Please record their list status (even if not listed) by going to PAT UPDATE -> TREATMENT -> TRANSPLANT -> PRE TX -> List Status Annual Review of Co-Morbid Data is due within 90 days, please enter data Current Drugs List (as of 24.04.2012 11:57) 19.03.08 NOVORAPID FLEXPEN 10 14.000unit TDSSC 19.03.08 LEVEMIR FLEXPEN 100i 8.000unit NIGHTSC 05.01.09 GABAPENTIN 100mg cap 200.000mg ON Oral 21.01.11 RAMIPRIL 10mg capsul 10.000mg D Oral 25.01.12 Osvaren 435mg + 235m 1.000tabs TDSOral 10.02.12 EPREX 2000iu/0.5mL p 2000.000unit 2 X WEEKLYIV 13.02.12 CALCIUM CARBONATE 1. 1.000gm PRN (TUMS)Oral -------------------------------------------------------------------------------

4. One Off’s • Spot audits • Eastern Region Anaemia audit • Internal audit • Transplant • Anaemia • Infection • Access

5. 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

6. 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

7. Once the data is received • It is decrypted • It is reformatted (‘cracked’) • It is validated

8. 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.

9. 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

10. 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

11. 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

12. 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.