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Evolution of Ontario's Childhood Cancer System 1983-2011: Achievements, Challenges, and Insights

This forum discusses the evolution of the childhood cancer system in Ontario from 1983 to 2011, focusing on achievements, challenges, and insights gained through data collection and analysis. It explores the role of the Pediatric Oncology Group of Ontario (POGO) and the need for a system to improve access to state-of-the-art treatment. Presentation on cancer statistics, healthcare system, POGO's role, data collection, and collaborative efforts in pediatric cancer care will be covered.

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Evolution of Ontario's Childhood Cancer System 1983-2011: Achievements, Challenges, and Insights

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  1. I° FORUM ONCOLOGICA PEDIATRICA DO RIO June 13-15, 2011 The Childhood Cancer System in Ontario An Evolution 1983 - 2011 Mark L. Greenberg, OC, MB, ChB, FRCPC POGO Chair in Childhood Cancer Control, University of Toronto Medical Director, Pediatric Oncology Group of Ontario (POGO) Senior Oncologist, The Hospital for Sick Children, Toronto

  2. Why is a system necessary The health care context and the challenge in Ontario What is POGO and the Ontario childhood cancer control system What have we achieved The role of data collection, curating and analysis Is it applicable elsewhere What have we learned About the culture About the process About the benefits Outline

  3. Size Counts! Childhood Cancer = Only 1-2% of cancer incidence

  4. PYLL in Childhood Leading causes Of PYLL among children 0-19 Canada 2000 Second biggest killer 1 -14

  5. Breast Childhood Cancer Hodgkin’s Disease Testis Uterus Corpus Oral Cavity Colorectal Uterus Cervix Bladder Non-Hodgkin’s Lymphomas Kidney Lung Ovary Brain Leukemia Melanoma Bleyer, WA CA 40:355-367 Stomach Multiple Myeloma Esophagus Pancreas Prostate 0 400,000 800,000 Years of Life Saved

  6. Canadian Health System Healthcare in Canada • Federal law defines single payer universal health care • Delivery is a provincial jurisdiction • Physicians compensated by billing provincial government or in Academic settings by Alternative Payment Plan • Non physician salaries come via a hospital global budget OR for some programs via POGO

  7. Childhood Cancer in Ontario The Challenge . . .

  8. Average Annual Number of Childhood Cancer Cases, 0-18 Years, Treated in POGO Centres by LHIN of Residence: 2003-2008 L12 15 L11 39 L9 45 L10 16 L8 53 L5 29 L3 22 L7 31 L4 47 L2 26 L13 15 L1 16 L14 * L6 37 Source: POGONIS

  9. Pediatric Cancer in Ontario EVERY YEAR About ~ 500 children are newly diagnosed 4000 are in active treatment/early follow up • Cure rate ~ 80% • About 100 children die

  10. The Cancer Control Continuum Diagnosis Supportive Care Treatment Prevention Screening Survivorship Palliation

  11. Why Did We Need a POGO? Five individual hospitals competing for resources and providing unequal services • Childhood cancer overlooked for years • Its unique planning imperatives were not understood • SYSTEM” required to allow • Individuals to look beyond their institutional interests • All health care providers to help shape the future system • Equity of access, to excellent state-of-the-art treatment • Planning for expanded diagnostic and treatment options • Engagement of policy/decision makers re: resources

  12. Ministry of Health Funding, Pre-1994

  13. HOW TO people WHAT TO people

  14. The DATA HOW TO people WHAT TO people

  15. Critical Considerations for Planning • Small numbers widely spread • Small volume, high tech, high intensity specialty • Treatment provided under protocols developed from clinical trials and complimentary practice guidelines • Specialist tertiary expertise is the core of the system • Requires • Comparably resourced centres of expertise • Cross referral and devolution where possible • Obligation/responsibility for care does not end when treatment ends

  16. Planning Requires Rationalization of services and centres of excellence Regional co-ordination and planning Easy movement among tertiary/quaternary services Access to pediatric sub-specialties Team-based, multi-disciplinary care Long-term follow-up Excellent data for provincial surveillance/planning COLLABORATION, COLLABORATION, COLLABORATION

  17. The POGO CollaborationA Childhood Cancer Control System

  18. Tertiary Centres SatelliteCentres AfterCare Clinic POGO Partner Programs CHEO Ottawa CH-LHSC London SRH Sudbury OSMH Orillia WRH Windsor SickKids Toronto TOHRCC Ottawa MCH-HHS Hamilton CHEO Ottawa CH-LHSC London SRHC Newmarket KGH Kingston GRH Kitchener MCH-HHC Hamilton KGH/KRCC Kingston RVHS Toronto East SickKids Toronto CVH Mississauga PMH Toronto

  19. What is POGO? • Stable (28 years) legally incorporated not-for-profit body • Registered charitable status • Supra-institutional • Fixed staff with primary allegiance to provincial vision • Funded by Ministry of Health and Long-term Care • Other ministries secondarily • Education • Child and Youth Services • Research grants • Philanthropy – for initiatives not appropriate for government funding

  20. Board representative of Senior staff of all centres and all disciplines Charged by law as trustees to have the aims and objects of POGO as their prime responsibility when wearing POGO hat External members with specific expertise Finance Governance Human resources Health policy What is POGO? • Medical Director who holds endowed academic chair • Cross-appointed at several constituent institutions • Primary appointment at POGO • Fulltime Executive Director

  21. Co-ordinate and improve childhood cancer system Advise Ministry on childhood cancer policy Select, standardize, collect and analyze provincial data to support policy and service planning Ensure strategic and equitable allocation of health care resources Identify growth areas, gaps Develop, cost and recommend solutions/strategies Develop evidence driven, consensus-based standards and guidelines What are POGO’s Roles?

  22. Catalyze support for needed programs based on evidence and data Oversee and support implementation of province-wide programs via partner institutions Guidelines (re) development Ongoing professional education Standardized, aggregate data analyzed to report service output, demographics, etc. Research in defined spectrum Education & knowledge transfer and exchange (KTE) What are POGO’s Roles?

  23. At the Interface of Ontario’s Childhood Cancer Organizations, POGO is Optimally Placed to have the Greatest Impact for the Largest Number Childhood Cancer Community Government (Provincial, Federal) Partners - CCS, Research Organizations Universities Private Sector Hospitals

  24. Parental/Family Services & Shield Integrated System of Care AfterCare Clinics Tertiary/Quaternary Network Financial assistance Education planning Satellite Network Interlink Provincial Pediatric Oncology System Mechanism for Evaluation/Research • POGO Research Unit • Epidemiology • Health Services • Economics • Status of Survivors/Quality of Life • POGONIS • Incidence • Disease Markers • Treatment Details • Psychosocial Data • Patient Outcomes • AfterCare Database • Service Planning Annual workload- and service delivery- reporting by Tertiary, Satellite, AfterCare Partners, and Interlink

  25. Shifting Staff to Patient Ratios

  26. POGONIS Data Content Overview • General Profiles • Demographics – Patient/Family • Sociographics – Patient/Family • Psychographics – Patient/Family Death Record Disease Diagnoses Status Markers Late Effects • MedicalTreatments • POGO Centres • Satellite Programs • Other/Non-POGO Health Service Utilization Data

  27. Surveillance Activity • Population profile • Service delivery demand/volumes • Incidence, treatment, and outcome trends analyses • System performance measures • Process • Outcomes • Efficiency/effectiveness

  28. Provincial Childhood CancerCases & Service Volumes

  29. Five-Year Average Annual Pediatric Oncology Cases in Ontario • Source: POGONIS • Based on most recent 5-year average available from POGONIS (CY 2005-2009) • New Cases include new malignancies, neoplasms of indeterminant behaviour (NIB) and limited registry (LR) patients. • Based on the most recent 5-year average available from POGONIS (CY 2004-2008) • Ongoing Active Treatment Cases include those undergoing chemotherapy, radiation, surgery or other therapies not in the first year of diagnosis. • Active Follow-Up Cases are monitored for cancer recurrence for 2 years after acute treatment ends. • Based on provincial tertiary data; however, data is currently being reviewed/ validated with one tertiary hospital. • Pediatric Long-Term Follow-Up/ AfterCare includes pediatric cases two years after treatment end date who are being followed by their primary oncologist or in pediatric AfterCare. • Total Caseload includes new cases, ongoing active treatment and active follow-up cases and pediatric long-term follow-up/ AfterCare cases.

  30. Pediatric Oncology Cases in OntarioCY 2004 to 2009 5-Year Average(2005-2009):485 5-Year Average(2004-2008):4,021

  31. Five-Year Average Annual Active Treatment & Active Follow-Up Service Volumes in Ontario1FY 2005/06 – FY 2009/10 • Reported data is retrieved by standardized query of population-based administrative databases (as identified in the table). The query is provided by POGO and is used by all POGO partner Decision Support Units.

  32. Active Treatment & Active Follow-Up Service Utilization Trends in OntarioFY 2004/05 – FY 2009/101 5-Year Average26,640 5-Year Average32,899 5-Year Average9.1 days 5-Year Average2,932 • Active treatment and active follow-up service utilization data prior to FY 2004/05 under review using standardized query of population-based administrative databases for tertiary centres other than SickKids.

  33. AfterCare Service Utilization Trends in Ontario1FY 2005/06 – FY 2009/10 5-Year Average 2,114 5-Year Average 398 5-Year Average 2,536

  34. Privileged Data Custodian Status • Provides the ability to link POGONIS data • with third party population databases, e.g. • Hospital Discharge Database • Physician Billing Database • Vital Stats, others

  35. Putting it All Together Theory Policy Research Practice Data

  36. POGO Exports To developed countries USA, Australia, UK and provinces across Canada Program guidelines, prototypes and database architecture/content/expertise To developing countries Jordan, Egypt, India, Central America (Guatemala, Nicaragua, Costa Rica, Panama, etc.) Safe handling guidelines, nursing leadership mentoring and program prototypes

  37. Knowledge Transfer Successes

  38. Value Added by POGO Integrated vision of childhood cancer control Leadership Rationalization of services Consensus-based, stakeholder-inclusive, planning Education Standardization of available data Equity of access to equivalent care across the province

  39. Critical Success Factors of Model dynamic problem identification + expertise-based leadership + multi-centre, multi-source input + excellent provincial data (45.1) + dedicated, knowledgeable Ministry consultant/team + provincial integration and coordinated delivery system = implementable system with built-in refinement/renewal

  40. HOW TO people WHAT TO people

  41. The DATA HOW TO people WHAT TO people

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