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The UKRR as a ‘whistleblower’ or guardian of quality in renal care

The UKRR as a ‘whistleblower’ or guardian of quality in renal care. Charlie Tomson Chair, UK Renal Registry CD Forum, March 2010. Outline. Current practice relating to ‘outliers’ What other registries do New data relating to access to transplant waiting list Discussion.

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The UKRR as a ‘whistleblower’ or guardian of quality in renal care

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  1. The UKRR as a ‘whistleblower’ or guardian of quality in renal care Charlie Tomson Chair, UK Renal Registry CD Forum, March 2010

  2. Outline • Current practice relating to ‘outliers’ • What other registries do • New data relating to access to transplant waiting list • Discussion

  3. British Lying-in Hospital, 1750 After mothers “gave thanks” on leaving, the Board quizzed them about their stays to elicit complaints

  4. British Lying-in Hospital, 1750 • “Patients’ disappointment over rancid caudle, bedbugs, and neglect by the female staff led to immediate investigations and remedies, including firing negligent staff found to be guilty or, on the other hand, prohibiting the complainant from receiving future charity if her charges were found to be exaggerated or false” Cody LF. Bulletin of the History of Medicine 2004;78: 309-348

  5. Lancet 1985; i;: 798- 802

  6. Forces for improvement • Clinicians and managers: quality improvement • Patients/public: informed choice • PCTs: commissioning, value for money • Royal Colleges/GMC: revalidation • NIHR: research • NHS litigation authority: risk management • Care Quality Commission: regulation • QIPP: efficiency

  7. Numbers don’t tell the whole story • The experience of listening to so many accounts of bad care, denials of dignity and unnecessary suffering made an impact of an entirely different order to that made by reading written accounts

  8. HQIP seminar on outliers 11/09 • Data quality • Cleansing and validation • Centre-specific reports • Identification of outliers • Funnel plot • Case mix adjustment • Terminology – ‘potential’ outliers • 1 year – isolated • 2 year – recurrent • 3 year - persistent

  9. HQIP seminar: key issues • Identifying potential outliers • Individual practitioners vs centres/teams • Funnel plot methodology • Agreed standards of measurement • Managing outliers • Write to centres outside 95% confidence limits • Inform CDs in writing • Professionally led • Require evidence that ‘potential outliers’ are being managed/investigated http://www.hqip.org.uk/assets/Downloads/2009-National-Clinical-Audit-Summit-Workshop-summary.pdf

  10. Incident patient survival: 4y cohort

  11. Incident patient survival: 1y cohort

  12. Prevalent patient survival

  13. Outlier letter • “The UKRR Committee and the RA Clinical Affairs Board have both recently re-visited this question, and have reaffirmed that the Registry should continue to alert Clinical or Specialty Directors to findings relating to mortality in their centre that might deserve further investigation, and to request evidence that this finding has been discussed with the Clinical Governance lead and Chief Executive of the Trust in which the centre is based.” • “We are aware that these survival statistics do not take the a complete case-mix adjustment into account; we are unable to adjust for case-mix in most centres because of incomplete returns of data on co-morbidity and primary renal diagnosis at the start of RRT, even though these items are now part of the mandatory national renal dataset in England.”

  14. Responses to ‘outlier letters’ • “Our patients are different” • “The data are wrong” • “We take this finding very seriously; neighbouring centres with similar case-mix have better survival” • “We are fortunate to be just below the 95% line: now we can get something done about our vascular access”

  15. Outliers for which variables? • To date, survival only (even though this is more susceptible to case-mix than many others); informal approaches on other variables, e.g. URR, Hb

  16. Access to transplantation • UKRR 8th Annual Report: joint analysis with UKT on access to transplantation • Significant variation between renal units in the proportion of dialysis patients listed for renal transplantation • Renal units with a higher proportion of listed patients do not have a higher ‘refusal rate’ or lower 1y graft or patient survival • Differences in listing practice between centres may reflect selection bias by health professionals UKRR 8th Annual Report, December 2005: Chapter 5.

  17. Transplant listing following presentation of data at national meetings, May 2005 Dudley C et al. Transplantation 2009; 88: 96-102

  18. Access to transplantation • UKRR 10th Annual Report • Wide and unexplained variations between centres in the percentage of prevalent dialysis patients on the renal transplant waiting list • Joint RA/BTS survey: centre differences in resource allocation and clinical practices governing access to renal transplantation in both transplant and non-transplanting centres UKRR 10th Annual Report, December 2007: Chapter 11

  19. Which is the best measure of access to transplantation? • Number on list/number of prevalent patients on a certain date: • Short-term fluctuations in numbers • Selective enrichment of prevalent population with untransplantable patients • Not listing patients being worked up for LRD Tps would reduce the numerator • Studies on incident patients preferable • Restrict to <65y • Attribution of pre-emptive Tps to the ‘parent’ dialysis centre not always possible

  20. Analysis restricted to incident patients UKRR 10th Annual Report, December 2007: Chapter 11

  21. Centre variation in access to renal transplantation – longitudinal study • Objective – to assess whether there is equity in access to renal transplantation in the UK after adjustment for case mix • Incident patients in 65 centres submitting data to UKRR between 1/03 and 12/05, followed until 12/08 (excluding pts >65y, pts activated and then immediately suspended, patients listed for multi-organ Tp) • Proportion of incident patients at each centre registered on waiting list, time taken to registration, and proportion subsequently transplanted

  22. Centre variation in percentage of incident patients wait-listed within 2 years of start of RRT: adjusted for age, gender, ethnicity and PRD Ravanan et al: BMJ, in press

  23. Centre variation in percentage of patients receiving NHB or LKD transplant within 2y of entry onto waiting list – adjusted for age, gender, ethnicity, PRD Ravanan et al: BMJ, in press

  24. Other important findings • Inter-centre differences particularly marked for living donor Tp and non-heart-beating donor Tp • Marked inter-centre differences in time to waitlisting • Significant centre effect on probability of receiving a transplant, after adjustment for patient-level factors

  25. Discussion • Should the UKRR reveal the identities of the centres that are outliers for access to transplantation (before the 13th Report) • To the centres? • To the UK renal community? • To patients? • To the BMJ readership? • Is the UKRR’s approach to ‘outliers’ the best way to fulfil its aim of improving the care of patients with kidney disease in the UK?

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