As the data flows… The data collection process Matthew 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 U BUILDER Bob Mon1 Wed1 Fri1 Deceased Date of Death = CAUSE OF DEATH missing CHANGE OF STATUS Date *>Status *Timeline event Deceased Death In-centre HD Change in treatment status ########################################################################## XXX XXX XXXX U 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 In-centre HD Change in treatment status Clinic Change in treatment status LC Clinic Change in treatment status Clinic Registration Date of Clinic : Friday MKA5R XXX XXX XXXX U 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 :57) NOVORAPID FLEXPEN unit TDSSC LEVEMIR FLEXPEN 100i 8.000unit NIGHTSC GABAPENTIN 100mg cap mg ON Oral RAMIPRIL 10mg capsul mg D Oral Osvaren 435mg + 235m 1.000tabs TDSOral EPREX 2000iu/0.5mL p unit 2 X WEEKLYIV CALCIUM CARBONATE gm 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 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 –NHS Wales Informatics Service's Secure File Sharing portal (surprising only available for Welsh units) –Encrypted file (PGP) via non-NHS.net

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.