CLINICAL REGISTRIES AND QUALITY IMPROVEMENT with case studies from cystic fibrosis. Context

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1 CLINICAL REGISTRIES AND QUALITY IMPROVEMENT with case studies from cystic fibrosis Geoff Sims Australian Clinical Registries Context Clinical registries meet an information need that cannot be met by administrative data (Evans S et. al. MJA 194:7 April 2011) Australian Health Ministers endorsed Strategic and operating principles for Australian clinical quality registries in November 2010 (ACSQHC) Australia has few registries capable of benchmarking outcomes nationally (Evans)

2 International perspective Well-managed registries enable medical professionals to engage in continuous learning and to identify and share best clinical practices (Larsson S et. al. Health Affairs 2011) Three enabling characteristics: Comprehensive, high quality data A bias towards data transparency Active engagement with the clinical community Case study: cystic fibrosis Relatively rare disease Lifetime care for persons with cystic fibrosis Typically delivered by multi-disciplinary care teams working in integrated inpatient, outpatient and home therapy environments CF registries have a long history in several countries, notably US (1966), Canada (1970), UK Benchmarking studies across cystic fibrosis treatment centres have facilitated learning from strategies of best-performing centres (Stern 2011)

3 Ten years of improvement innovation in cystic fibrosis care Findings from benchmarking Nutritional strategies Boston/Toronto comparative study (Corey 1988) Treatment at specialised CF centres of minimum size (Mahadeva 1998) More regular clinic visits and aggressive administration of antibiotics (Johnson 2003) Neonatal screening Australia/US registry comparison (Martin 2012)

4 Translation to Standards of Care National CF QI programs US Cystic Fibrosis Foundation quality improvement initiative / quality improvement toolkit. Accreditation of CF centers UK Cystic Fibrosis Trust standards of care, peer review program, UK CF registry German CF Quality Assurance Project 2004 to 2007 worked from benchmarking to facilitated continuous quality improvement strategies (Stern 2011) Australia...

5 Patient involvement New Yorker magazine article (Gawande 2004) Transparent outcome reporting indicators published for CF treatment centres from US, UK and Canadian patient registries UK also makes centre peer review outcomes transparent Australian registry published one round of transparent indicators for Further work deferred pending improved risk adjustment. Australian Cystic Fibrosis Data Registry Has operated since 1998 Cystic Fibrosis Australia trusted third party custodian A collaboration with CF Centre Directors All 23 specialist CF treatment centres contribute patient data to the registry Range of data collected meets clinical quality registry requirements (CFA 2013)

6 Benchmarking reports 140 FEV1 %Predicted, Males 6-11 years Australian Cystic Fibrosis Data Registry Stratified comparison National benchmark fev1pp_us Quality labels Identified centres Annotations below: * less than 90% reported 20 PMH RCB SCH WCH* CHW MCH TAC RCM JHC excludes outside values Major paed excludes outside values Quality of care virtuous cycle Standards of Care Data registry Peer reviews of Cystic Fibrosis Treatment Centres (data transparency) Peer review

7 Outcomes for CF patients Sources: CFF 2013, CFA 2013 Acceptance of benchmarking Publishing identified centre-level data both requires and encourages good quality data Quality of submitted data has improved Missing data are becoming less prevalent Good cooperation to correct data entry error Timeliness has improved remarkably Centre Directors showing sensitivity to ranking Focus on factors influencing data Consumer discussion through social media

8 Developments needed Upgrade of CF registry software (under way) Data quality benchmarking linkage with National Death Index (imminent) Calculation of median survival (after NDI link) Risk adjustment model for centre comparisons Facilitated quality improvement program needs funding E-health connections (another story!) International data harmonisation pending References Evans S, et. al. Development of clinical quality registries in Australia: the way forward. MJA 194(7) 4 April 2011, pp Australian Commission on Safety and Quality in Health Care. Strategic and operating principles for clinical quality registries. Accessed 2 September 2014 from website: Larsson S, et. al. Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care s value. Health Affairs 5 31, No 1 (2012), pp Stern M, et. al. on behalf of the German CFQA Group. Benchmarking improves quality in cystic fibrosis care: a pilot project involving 12 centres. Int J Qual Health Care 2011; pp1-8. Corey M, et.al. A comparison of survival, growth and pulmonary function in patients with cystic fibrosis in Boston and Toronto. J Clin Epidemiol 198; 41: Mahadeva R, et. al. Clinical outcome in relation to care in centres specialising in cystic fibrosis: cross sectional study. BMJ 1988; 316: Johnson C, et. al. Factors influencing outcomes in cystic fibrosis. Chest 123 (2003): Martin B, et. al. Comparison of the US and Australian cystic fibrosis registries: the impact of newborn screening. Pediatrics 129 (2912): CastellaniC, Conway S, Smyth AR, Stern M (Guest editors). ECFS Standards of Care for Cystic Fibrosis: The 2014 Edition. JCF 13 Suppl1 May 2014 Standards for the clinical care of children and adults with cystic fibrosis in the UK. Second edition. December Bromley,Kent: Cystic Fibrosis Trust Fitzgerald D (ed). Cystic fibrosis standards of care, Australia. North Ryde NSW, Cystic Fibrosis Australia 2008 Gawande A. The bell curve: What happens when patients find out how good their doctors really are? The New Yorker, Annals of Medicine. 8 December 2004 Cystic Fibrosis Foundation Patient Registry: 2012 Annual Data Report. Bethesda, Maryland: CFF Cystic Fibrosis Australia. Cystic Fibrosis in Australia 2012: 16th annual report from the Australian Cystic Fibrosis Data Registry. Baulkham Hills NSW: CFA 2013 Gaskin K, Wilcken B. Long-term outcomes for patients with cystic fibrosis in Australia. MJA 195(7) 3 October 2011 (editorial)

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