1. Why your data matters? How it helps patients, the NHS and research? How do I get UKRR data for research? Dr Retha Steenkamp Senior Statistician, UKRR

2. What does the Renal Registry do with your data? Established by the Renal Association to act as a resource in the development of patient care in renal disease Collect, analyse and publish data relating to the incidence, prevalence, clinical management and outcomes of patients with end stage renal disease Provide comparative data for audit and quality improvement of renal services, benchmarking, international comparisons, service planning, standard setting Undertake epidemiological research All with the aim of improving the standard of care

3. Who are the main users of the data? Nephrologists UKRR data allow the comparative review of many elements of renal centre practice Patients Use of Registry data should improve equity of access to care, adequate facilities, efficient use of resources Trust Managers Data are used for benchmarking and quality assurance, assessment of contract activity and service delivery is also possible Commissioners and health care providers Model future demand: acceptance and prevalence rates over time. Identify potential unmet need and assess the equity of access of service provision: renal transplant rate, referral and treatment patterns, patients by geographical area

4. Examples of how your data helps patients, the NHS and research

5. Example 1 Socio-economic status, ethnicity and geographical variations in acceptance rates for renal replacement therapy in England and Wales: an ecological study Udayaraj U, Ben-Shlomo Y, Roderick PJ, Casula A, Ansell D, Tomson CRV, Caskey CJ J Epidemiol Community Health 2010;64:535e541.

6. Age-gender standardised RRT rate per million populations in PCT/LHBs in England and Wales in 2007

7. Relation between RRT standardised rate ratio and deprivation

8. Relationship between standardised rate ratio for RRT and proportion of non-white population in PCTs in England in 2007

9. Important results from this study RRT acceptance rates are positively associated with area level social deprivation and % non- white people in an area. However, regional variations in RRT acceptance rates still persist after adjustment for socio-demographic characteristics. Further study is required to understand the extent to which extent these differences reflect variation in underlying need or provision of care.

10. Example 2 Variation between centres in access to renal transplantation in the UK: longitudinal cohort study R Ravanan, U Udayaraj, D Ansell, D Collett, R Johnson, J O’Neill, C R V Tomson, C R K Dudley BMJ 2010;341:c3451, doi:10.1136/bmj.c3451

11. Variation between centres in access to renal transplantation in the UK Aim: Assess whether equity exists in access to renal transplantation in the UK after adjustment for case mix in incident patients on RRT. Outcome: Proportion of incident dialysis patients at each renal centre who were registered on the national transplant list; time taken to achieve registration; and proportion of patients subsequently transplanted.

12. Percentage registered for transplantation within two years of starting renal replacement treatment R Ravanan et al. BMJ 2010;341:bmj.c3451

13. Median time to transplant listing after start of dialysis R Ravanan et al. BMJ 2010;341:bmj.c3451

14. Percentage of patients receiving a transplant from a donor after cardiac death or living kidney donor within two years of being registered for transplantation R Ravanan et al. BMJ 2010;341:bmj.c3451

15. Variation between centres in access to renal transplantation in UK Results: Variations exist in access to the renal transplant waiting list, time to listing and receipt of a renal transplant in the UK, which cannot be explained by variations in case mix. Significant inter-centre variability was seen in outcomes predominantly under the influence of centre specific practices, such as time to waiting list inclusion and transplantation from donors after cardiac death/living kidney donors.

16. Example 3 Variation in centre-specific survival in patients starting RRT in England is explained by enhanced comorbidity information from hospitalization data James Fotheringham et al. Nephrol Dial Transplant (2014) 29: 422–430

17. Funnel plot for age adjusted 1 year after 90 days survival, 2009-2012 incident cohort ONLY AGE ADJUSTED!

18. School of Health and Related Research Linkage to Hospital Episodes data James Fotheringham - PhD 21,633 Incident RRT Patients 2002 – 2006 UKRR Data until Oct 2009 2.8 Million Episodes 1996-2011 290,000 Hospital Admissions (~13 per patient) 2 Million Outpatient Appt. 11,547 Deaths up to 31/12/2010 14.4% At Home HES Hospital Associated Mortality Renal Centre & Hospital Level Length of Stay & Freq. of Admission Start of RRT & End of Life Comprehensively Adjusted Survival Late presentation, Comorbidity & PRD

19. UKRR-HES LINKAGE : ETHNICITY Ethnic GroupUKRRHES 1 UKRR & HES 2 Number% % % Asian 1,6839.31,7459.11,8048.8 Black 1,0645.91,0495.51,1385.5 Other 4712.64152.25202.5 White 14,85882.216,03483.317,14783.2 Subtotal 18,076100.019,243100.020,609100.0 Missing 3,09914.61,9329.15662.7 Total21,175 1 Hospital admissions and outpatient appointments ethnic groups combined 2 UKRR and HES ethnic groups combined

20. UKRR-HES LINKAGE : C OMORBIDITY, P ercentage agreement/disagreement Comorbid condition AgreementDisagreement Present HES Present UKRR Present HES, Absent UKRR Present HES, Missing UKRR Angina48.26.913.4 Angioplasty41.12.43.4 Claudication46.53.87.4 COPD40.13.15.6 Diabetes 1 93.54.816.6 Ulceration15.50.71.3 Liver disease31.40.71.9 Malignancy45.82.27.1 CABG52.91.34.8 MI57.95.613.0 Amputation29.80.61.4 Cerebro-VD45.83.58.1

21. Mean Centre-Specific Survival at three years adjusted to age 65 and male: 69.7%, range 60.2 – 78.7%. Six centres with worse than expected survival highlighted in red. Funnel plots detailing centre specific three year survival adjusted for age and sex

22. Centre specific survival adjusted for age, sex, ethnicity, socioeconomic status and year of start of renal replacement therapy Mean Centre-Specific Survival at three years adjusted to white 65 year old male in most deprived group starting renal replacement therapy in 2002: 67.9%, range 60.5 – 75.02%. Four centres with worse than expected survival highlighted in red.

23. Centre specific survival adjusted for age, sex, ethnicity, socioeconomic status, year of start of renal replacement therapy and 16 comorbid conditions Mean Centre-Specific Survival at three years adjusted to all characteristics including demography and comorbidity: 78.8%, range 72.9 – 86.3%. 1 centre with worse than expected survival highlighted in red.

24. HES-UKRR data linkage Results : Linked data between a national registry and hospital admission dramatically reduced missing data. Nearly all the variation between English renal centres in 3-year survival on RRT was explained by demographic factors and by comorbidity. Current variation in centre survival might not reflect genuine differences in the quality of care.

25. HES linkage – potential avenues opened up Hospitalisation rates Procedures Location Diagnosis Describe events pre-RRT Improved comorbidity completeness

26. Example 4 Reported infection rates among patients on RRT in England, 2012-2013

27. Box and whisker plot for renal centres’ MRSA rates per 100 dialysis patient years

28. Box and whisker plot for renal centres’ MSSA rates per 100 dialysis patient years

29. Work Proposal email back to renalregistry@renalregistry.nhs.uk Research Ethics Permission Data Sharing Agreement How to get access to UKRR data?

30. The following criteria will be considered when assessing the work proposal: originality feasibility of addressing the question quality of available data plan of analysis likely importance to patients and the NHS cost Work Proposal Review

31. Originator will be informed of one of the following: 1.Accepted as it stands 2.Provisionally accepted 3.Accepted as it stands, but cannot be accommodated within the next 6 months 4.Accepted if additional funding can be obtained 5.Rejected with an explanation for the decision 6.Proposal requires further work before a decision can be made. The additional information needed will be specified Work Proposal Feedback

32. Research Ethics Committee approval is required for any research undertaken on UK Renal Registry data. Apply to analyses undertaken by researchers within the organisation and those working on anonymised copies of UKRR data in other organisations. Ethics applications can be submitted through the Integrated Research Application System (IRAS). The Registry is preparing guidance to help researchers complete the relevant forms on IRAS, guidance will be available on the Registry’s website shortly. Local R&D approval will also be required, but only at the site undertaking the analysis. Research Ethics Permission

33. Purpose for sharing information Information to be shared When and how often is the information to be shared? What media is used for transferring the data? How is the information to be stored? Who will handle the data? Please state the authorised users. How long will the data be held i.e. retention period? What is the destruction process? Responsibilities How often will you report back to the Registry on the use the data has been put to? Data Sharing Agreement

34. Early involvement of the UKRR very important. In the last 12 months the UKRR has been a co-applicant on three grant applications. 1.NIHR SBRI D4D: Medicines Reconciliation, led by Dr Keith Simpson exploring possibilities for medicines reconciliation using PatientView and linkage to GP medication data. 2.NIHR RfPB: UK PDOPPS-catheter, led by Dr Martin Wilkie (Sheffield) exploring the practice patterns associated with early PD catheter failure. 3.Health Foundation: ASSIST-CKD, led by Dr Hugh Gallagher (Epsom and St Heliers) evaluating a quality improvement intervention that involves generating eGFR graphs for GPs in CKD patients with deteriorating kidney function. Research grant applications

35. Your data matters. Data received from renal units are used not only for audit and reporting purposes, but in quality research, all with the aim of improving patient care. Questions? Conclusion