1. CD FORUM : R EGISTRY UPDATE, THE WHO WHAT, HOW, WHERE, WHEN AND WHAT NEXT. Damian Fogarty Chairman, United Kingdom Renal Registry Consultant Nephrologist and Senior Lecturer Queen’s University Belfast and Belfast City Hospital, Northern Ireland, UK. d.fogarty@qub.ac.uk damian.fogarty@belfasttrust.hscni.net 0117 323-5665 CD forum London 4 th March 2011

2. Registry Chairman Dr Damian Fogarty Registry Committee/Study Groups Director Prof Terry Feest Deputy Director Chris Maggs General Manager Hilary Doxford Registry Registrars Dr Clare Castledine Dr Dan Ford Dr Lynsey Webb Systems & Data Manager David Bull Senior Statisticians Julie Gilg Margaretha Steenkamp Project Manager Sue Shaw Clinical Informatics Manager Fiona Braddon Statisticians Anna Casula Dirk van Schalkwyk External Project Contractors Programmers (p/t) Matthew Brealey Andy Langdon Senior Clinical Data Manager Paul Dawson External IT Contractors Clinical Data Management Becky Blackwell Lynsey Billet Fran Benoy-Deeney Renal Registry Management Board (Renal Association Trustees)

3. S TAFF ISSUES 1 st Director, Dr David Ansell left October 2010 Deputy director Prof Chris Maggs retired Feb 2011 Job description for new Director National Audit role and experience Understanding renal data Making best use of renal systems and linkage to others ? Epidemiologist ? Clinical Input

4. I’M A RRT PATIENT-GET MY DATA OUT OF HERE! 16 UK Renal Information systems Systems for PD vs HD vs Tx vs CKD Transplant (eg CTS) POET ADEQUEST 75 units x 4 files for each quarter 4 Ye must return data to us @UKRR

5. Upload Numbers Report produced RR No’s received from System Mgr RR No’s Issued to units to be uploaded Errors checked by Data Mgr & corrected by Units Data file received Report run and sent to Renal Registry Data File Cracked Validation Macro Data File given to Data Mgrs for Validation Errors corrected Units contacted with missing data Missing data/errors faxed/emailed to units Missing Data received Data file amended Checked by Senior Data manager Checked and corrected by data managers Units correct errors and send corrections Data checked by senior data manager File loaded on database D ATA PROCESSING …… SLOW BUT SURE !

6. P ROJECTS IN USE AND / OR DEVELOPMENT Paediatric merger UKT data sharing Renal Patient View RCP – HES link Patient orientated reports RADAR ATTOM Vascular Access audit

7. NATIONAL RENAL UNIT SURVEY 2010 CLARE CASTLEDINE AND FERGUS CASKEY Aims: a) Identify & measure characteristics of renal centres associated with RRT incidence b) Identify & measure characteristics of renal centres associated with the incident home dialysis as modality Methods: Systematic literature review then expert panel consensus → 43 questions: demographics, staffing, referrals, service provision and decision making processes.

8. P RELIMINARY RESULTS - RRT incidence 71 of 72 units responded 396 nephrologists in UK (whole time equivalents) Median 6.9 doctors pmp (England only) Median 1.6 doctors per 100 dialysis patients Median 1.06 education team members per 100 incident pts Home dialysis therapies 193 home team members in UK Median 1.7 (0.6-2.7) per 100 incident patients Median 2.9 (1-8) home team members per million population (England only) 32% of centres had physicians who could insert PD catheters 29% centres use acute PD More at Renal Association

9. A NNUAL REPORTS “ A resource in the development of renal patient care in ……comparative data for audit, benchmarking, planning, policy and research.” 60 Million people 75 Main Renal Units Quarterly data downloads 47,525 prevalent patients 31 st December 2008 Annual report on unit activity-incidence, prevalence, modalities Unit performance displayed as caterpillar plots and funnel charts

10. UK Renal Registry 12th Annual Report

11. UK Renal Registry 12th Annual Report Changing demographics over lifetime of UKRR

12. PD→ ASSISTED PD

13. LIMITATIONS AT UNIT AND UKRR LEVEL IT infrastructure Dependence on paper for much inpatient work because it always works short term Competing IT systems within renal units Competing IT systems outwith renal units Incomplete data Inaccurate data Lack of comorbidity data Dataset omits important aspects of care, e.g Hospitalisation Quality of life Patient Reported Outcomes Measures (PROM) Nothing yet on AKI

14. MIND THE GAP! - THE DATA GAP  Dates they saw renal doctor first  Primary Renal Disease  Other conditions (comorbidity)  Incident vascular/PD access  Drug treatment esp ESA/Iron  Use of palliative/conservative care  Date and causes of death  The future  Quality of life  Patient reported outcomes

15. C OMORBIDITY -B IRMINGHAM STYLE

16. D ECLINE IN COMORBIDITY REPORTING 16

17. Primary renal disease UK Renal Registry 12th Annual Report L EARNING FROM OTHERS ON THE DATA ELEMENTS - PRD AS EXAMPLE

18. UK Renal Registry 12th Annual Report A LL PRIMARY DISEASES MISSING ?? REALLY

19. UK Renal Registry 12th Annual Report A LL PRIMARY DISEASES U NCERTAIN ?? REALLY

20. 14,000 PATIENTS / FAMILY / STAFF REGISTERED WITH WWW. RENALPATIENTVIEW. ORG

21. T HE FUTURE FOR THE UKRR Keep doing what we do but do it better Increased sharing with other National Clinical Audits, Hospital Episodes Statistics, other registries More hard outcomes required ?Leave laboratory data audit at local level Develop better data management Renal Patient View Rare Diseases (RADAR) Other projects

22. Registry Committee Study groups

23. I’ M A BUSY CD – WHAT ’ S THE TAKE - HOME MESSAGE Report is coming but late Remember the IT challenges for you and us Aim for one major system with linkages to others Transplant POET ADEQUEST Increased use by staff Dedicated system manager Trained (resourced) Renal Unit staff at all levels 23 Ye must return data to us @UKRR

24. T HE FUTURE FOR THE UNITS SENDING DATA TO THE REGISTRY Keep solvent Recognise that collecting data informs you and allows you to challenge commissioners Invest in IT & know the IT staff Linkage with other systems that increase the benefits & usage of the renal IT Talk to us more and vice versa

25. Thank you for all your hard work supplying the data www.renalreg.com chair@renalreg.com terry@renalreg.com renalreg@renalreg.com Telephone:0117 323 5665