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Establishing a global quality of care benchmark report Presented by: Fanny Sampurno 13 th August 2019 Background TrueNTH Global Registry (TNGR) is an international project that aims to improve care by using a consistent dataset to: identify

  1. Establishing a global quality of care benchmark report Presented by: Fanny Sampurno 13 th August 2019

  2. Background TrueNTH Global Registry (TNGR) is an international project that aims to improve care by using a consistent dataset to: • identify variations; and • optimise outcomes and quality of care in men with localised prostate cancer.

  3. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Funded by Executive Committee Data Coordination Centre (DCC) Project Coordination Centre (PCC) Prof Sue Evans, Dept. of Dr Mark Litwin, Dept. urology, UCLA Epidemiology, Monash University

  4. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Funded by Executive Committee Data Coordination Centre (DCC) Project Coordination Centre (PCC) Prof Sue Evans, Dept. of Dr Mark Litwin, Dept. urology, UCLA Epidemiology, Monash University 25 Local Data Centres (LDCs), operating in 15 countries

  5. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up • Aim: To obtain expert consensus on indicators that can measure the quality of localised prostate cancer management worldwide. • Methodology: o Literature reviews on numerous international evidence-based clinical guidelines; o Expert panellists were asked to rate the importance and feasibility of each of the recommendations. • A set of 33 evidence and consensus based quality indicators (QI) were selected. Process of care 15 indicators QI 1-15 Clinical Outcomes 6 indicators QI 16-21 Process of care 6 indicators QI 22-27 PROMs Outcomes 6 indicators QI 28-33

  6. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology 1. Determine the best way to present the data 2. Develop the report

  7. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology - Determine the best way to present the data 35 2 members Surveys completed 2 nd survey 17 18 Non 7 Clinicians Clinicians Working group Sessions 1 st Survey: 10 members (5 clinicians and 5 non-clinicians) 83% RR 2 nd Survey: 35 members (17 clinicians and 18 non-clinicians) 92%RR

  8. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology - Determine the best way to present the data Dashboard

  9. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology - Determine the best way to present the data Quality Indicators (QI) Process of QI 1-15 care Clinical Outcomes QI 16-21 Process of QI 22-27 care PROMs Outcomes QI 28-33

  10. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology - Determine the best way to present the data Quality Indicators (QI) Process of QI 1-15 care Clinical Outcomes QI 16-21 Process of QI 22-27 care PROMs Outcomes QI 28-33

  11. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology – Develop the report 1. Automate vs manual process 2. Off the shelf vs Bespoke report 3. SQL vs R Report

  12. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology – Develop the report TNGR 1 Tasks 1 Set up research extract

  13. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology – Develop the report TNGR • ADMIN 1 • Biopsy Pre-treatment • AS • WW • Prostatectomy Treatment • EBRT • : Tasks • : 1 Set up research extract • Progression • Patient reported

  14. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology – Develop the report TNGR 1 Safe Haven Tasks 1 Set up research extract

  15. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up TrueNTH Global Registry Safe Haven • It is a secure remote access system which provides secure data access to approved users. • Approved data users are provided with a Monash account to log onto Safe Haven via a virtual private network (VPN). • Connection to Monash VPN requires two-factor authentication. • Statistical applications, reference management software and Microsoft office programs are available in Safe Haven. • Data is not permitted to leave Safe Haven, except when all relevant regulatory and governance approvals have been obtained.

  16. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Employ R Data Scientists

  17. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology – Develop the report TNGR 1 2 Quality Indicators 3 (QI) calculation Safe Haven Tasks 1 Set up research extract 2 Prepare QI calculation details 3 Build QI report using R Markdown

  18. Calculation Details Quality Indicators (QI) Calculation Research Extract QI_Wraggling Data Frame INDICATOR Description TNGR Data Sheet Numerator Denominator Data Completeness DIAGNOSIS This indicator Quality PSA level is BiopPSAStatus == 1 reports on Biopsy 1 documented at & BiopTime == 1 Indicator documentation of diagnosis BiopTime == 1 A set of report for PSA at diagnosis… each site Clinical T category/ This indicator BiopcT %in% 0:13 2 stage is reports …. Biopsy & BiopTime == 1 Control Script documented BiopTime == 1

  19. Calculation Details Quality Indicators (QI) Calculation Research Extract QI_Wraggling Data Frame INDICATOR Description TNGR Data Sheet Numerator Denominator Data Completeness DIAGNOSIS This indicator Quality PSA level is BiopPSAStatus == 1 reports on Biopsy 1 documented at & BiopTime == 1 Indicator documentation of diagnosis BiopTime == 1 A set of report for PSA at diagnosis… each site Clinical T category/ This indicator BiopcT %in% 0:13 2 stage is reports …. Biopsy & BiopTime == 1 Control Script documented BiopTime == 1

  20. Workflow QI Calculation Details Research Extract Data Frame QI_Wraggling Quality Indicator A set of report for each site Control Script

  21. Workflow QI Calculation Details Research Extract Data Frame QI_Wraggling Quality Indicator Quality Indicator A set of report for each site Control Script

  22. Workflow QI Calculation Details Research Extract Data Frame QI_Wraggling Quality Indicator

  23. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Methodology – Distribute the reports TNGR 1 2 QI calculation 3 details Safe Haven Tasks 4 1 Set up research extract 2 Prepare QI calculation details 3 Build QI report using R Markdown Distribution of the reports 4

  24. 2018-19: TNGR 2019: TNGR first report 2015-17: TrueNTH Global 2017: Expert consensus Report development on quality indicators to LDCs and sites Registry (TNGR) set up Distribution of the reports • Reports are distributed via SFTP. • Q&A sessions were held: o To educate data managers on how to interpret the QI reports; o To understand how are they going to use the QI reports at a local level & to whom the reports will be distributed to; o To address questions and concerns from the data managers. • FAQs page Reports comparing indicator performance are distributed to LDCs and participating sites with the purpose of improving the CONSISTENCTY and QUALITY of prostate cancer management on a global basis.

  25. Acknowledgements TrueNTH Global Registry Team : Prof Sue Evans, Jacinta Opie, Ashwini Kannan and UCLA Team TrueNTH Global Research Reports Working Groups Data scientists : Justin Cally, Anh Tran and Arturo Santacruz Monash University eResearch and Helix teams: Jerico Revote, Komathy Padmanabhan, Mat Ishac and John Liman R expert group : Caroline Gao, Nick Wong, Ashley Stewart and Jess Lockery Funder : Movember Foundation Paul Villanti and Ruth Liley

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