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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
Outline
• 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
o About the culture
o About the process
o About the benefits
Size Counts!
Childhood Cancer = Only 1-2% of cancer
incidence
PYLL in Childhood
Leading causes
Of PYLL among
children 0-19
Canada 2000
Second biggest killer 1 -14
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
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
Childhood Cancer in Ontario
The Challenge . . .
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
L8
53
L5
29
L3
22
L2
26
L1
16
Source: POGONIS
L10
16
L7
31
L4
47
L6
37
L13
15
L14
*
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
The Cancer Control Continuum
Prevention
Screening
Diagnosis
Treatment
Supportive
Care
Why Did We Need a POGO?
Five individual hospitals competing for resources
and providing unequal services
Childhood cancer overlooked for years
o Its unique planning imperatives were not
understood
SYSTEM” required to allow
oIndividuals to look beyond their institutional interests
oAll health care providers to help shape the future system
o Equity of access, to excellent state-of-the-art treatment
oPlanning for expanded diagnostic and treatment options
oEngagement of policy/decision makers re: resources
Ministry of Health Funding, Pre-1994
ADULT ONCOLOGY CARE
PEDIATRIC ONCOLOGY CARE
HOW TO
people
WHAT TO
people
The
DATA
HOW TO
people
WHAT TO
people
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
o Requires
– Comparably resourced centres of expertise
– Cross referral and devolution where possible
• Obligation/responsibility for care does not end when
treatment ends
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
The POGO Collaboration
A Childhood Cancer Control System
POGO Partner Programs
Tertiary Centres
Satellite Centres
CH-LHSC
London
AfterCare Clinic
WRH
Windsor
MCH-HHS
Hamilton
CHEO
Ottawa
SRH
Sudbury
OSMH
Orillia
SickKids
Toronto
CHEO
Ottawa
CH-LHSC
London
TOHRCC
Ottawa
SRHC
Newmarket
GRH
Kitchener
SickKids
Toronto
KGH
Kingston
MCH-HHC
Hamilton
CVH
Mississauga
PMH
Toronto
RVHS
Toronto East
KGH/KRCC
Kingston
What is POGO?
• Stable (28 years) legally incorporated not-for-profit body
o
Registered charitable status
• Supra-institutional
• Fixed staff with primary allegiance to provincial vision
• Funded by Ministry of Health and Long-term Care
o
Other ministries secondarily
–
–
o
o
Education
Child and Youth Services
Research grants
Philanthropy – for initiatives not appropriate for
government funding
What is POGO?
• Medical Director who holds endowed academic chair
o
o
Cross-appointed at several constituent institutions
Primary appointment at POGO
• Fulltime Executive Director
• Board representative of
o
Senior staff of all centres and all disciplines
–
o
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 are POGO’s Roles?
• 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
o
Develop, cost and recommend solutions/strategies
• Develop evidence driven, consensus-based standards
and guidelines
What are POGO’s Roles?
• Catalyze support for needed programs based on
evidence and data
• Oversee and support implementation of province-wide
programs via partner institutions
o
o
o
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)
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
Partners CCS, Research
Organizations
Government
(Provincial, Federal)
Universities
Private Sector
Hospitals
Provincial Pediatric Oncology System
Integrated System of Care
Mechanism for
Evaluation/Research
Parental/Family
Services & Shield
AfterCare
Clinics
Tertiary/Quaternary
Network
Financial
assistance
Interlink
Satellite
Network
•
•
•
•
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 deliveryreporting by Tertiary, Satellite, AfterCare
Partners, and Interlink
Education
planning
Shifting Staff to Patient Ratios
POGONIS Data Content Overview
General Profiles
• Demographics – Patient/Family
• Sociographics – Patient/Family
• Psychographics – Patient/Family
Death Record
Disease
Diagnoses
Status Markers
Medical
Treatments
• POGO Centres
• Satellite Programs
• Other/Non-POGO
Late Effects
Health Service
Utilization Data
Surveillance Activity
• Population profile
• Service delivery demand/volumes
• Incidence, treatment, and outcome trends
analyses
• System performance measures
o Process
o Outcomes
o Efficiency/effectiveness
Age adjusted incidence rate (/100,000) of childhood cancer in Ontario, 1985-2004, 0-14 Years
16
14
12
10
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
Adjusted to Ontario Pop
1995
1996
1997
1998
Adjusted to World Pop
1999
2000
2001
2002
2003
2004
Age adjusted incidence rate (/100,000) of leukemia in Ontario, 1985-2004, 0-14 Years
6
5
4
3
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
Adjusted to Ontario Pop
1995
1996
1997
1998
Adjusted to World Pop
1999
2000
2001
2002
2003
2004
Provincial Childhood Cancer
Cases & Service Volumes
Five-Year Average Annual
Pediatric Oncology Cases in Ontario
New Cases 1,2
485
Ongoing Active Treatment and Active Follow-Up Cases 3,4,5
1,999 6
Pediatric Long-Term Follow-Up/ AfterCare 3,6,7
2,022
Total Caseload 3,8
4,021
Source: POGONIS
1.
2.
3.
4.
5.
6.
7.
8.
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.
Pediatric Oncology Cases in Ontario
CY 2004 to 2009
New Childhood Cancer Cases, Ontario
Total Childhood Cancer Caseload, Ontario
(Source: POGONIS)
(Source: POGONIS)
600
500
400
5-Year Average
(2005-2009):
485
300
200
100
0
2004
2005
2006
2007
2008
2009
5,000
4,500
4,000
3,500
3,000
2,500
2,000
1,500
1,000
500
0
5-Year Average
(2004-2008):
4,021
2004
2005
2006
2007
2008
Five-Year Average Annual
Active Treatment & Active Follow-Up
Service Volumes in Ontario1
FY 2005/06 – FY 2009/10
Ambulatory Visits
Source: Management Information System (MIS) database
Inpatient Days
Source: Discharge Abstract Database (DAD)
Inpatient Admissions
Source: DAD
Average Length of Stay (in days)
Source: DAD
32,899
26,640
2,932
9.1
1. Reported data is retrieved by standardized query of populationbased administrative databases (as identified in the table). The
query is provided by POGO and is used by all POGO partner
Decision Support Units.
Active Treatment & Active Follow-Up
Service Utilization Trends in Ontario
FY 2004/05 – FY 2009/101
40,000
Ambulatory Visits, Ontario
Inpatient Days, Ontario
(Source: Management Information System)
(Source: Discharge Abstract Database)
35,000
35,000
30,000
30,000
25,000
25,000
20,000
20,000
15,000
15,000
5-Year Average
32,899
10,000
5,000
5-Year Average
26,640
10,000
5,000
0
0
2004/05
2005/06
2006/07
2007/08
2008/09
2004/05
2009/10
2006/07
2007/08
2008/09
2009/10
Average Length of Stay (in days), Ontario
Inpatient Admissions, Ontario
(Source: Discharge Abstract Database)
(Source: Discharge Abstract Data)
12.0
3,500
10.0
3,000
8.0
2,500
6.0
2,000
1,500
5-Year Average
9.1 days
4.0
5-Year Average
2,932
1,000
2.0
500
0.0
0
2004/05
1.
2005/06
2005/06
2006/07
2007/08
2008/09
2009/10
2004/05
2005/06
2006/07
2007/08
2008/09
2009/10
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.
AfterCare Service Utilization Trends in Ontario1
FY 2005/06 – FY 2009/10
Provincial Pediatric and Adult AfterCare New Cases
Provincial Pediatric and Adult AfterCare Cases Seen
(Source: Annual Service Metrics reported by AfterCare Data
Managers)
(Source: Annual Service Metrics Reported by AfterCare Data
Managers)
500
2,500
400
2,000
300
1,500
5-Year Average
398
200
100
5-Year Average
2,114
1,000
500
0
0
2005/06
2006/07
2007/08
2008/09
2009/10
2005/06
2006/07
Provincial Pediatric and Adult AfterCare
Ambulatory Visits
3,000
(Source: Annual Service Metrics Reported by AfterCare Data
Managers)
2,500
5-Year Average
2,536
2,000
1,500
1,000
500
0
2005/06
2006/07
2007/08
2008/09
2009/10
2007/08
2008/09
2009/10
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
Putting it All Together
POGO Exports
• To developed countries
o USA, Australia, UK and provinces across Canada
o Program guidelines, prototypes and database
architecture/content/expertise
• To developing countries
o Jordan, Egypt, India, Central America (Guatemala, Nicaragua,
Costa Rica, Panama, etc.)
o Safe handling guidelines, nursing leadership mentoring and
program prototypes
Knowledge Transfer Successes
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
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
HOW TO
people
WHAT TO
people
The
DATA
HOW TO
people
WHAT TO
people
POGO Partner Programs
Tertiary Centres
Satellite Centres
CH-LHSC
London
AfterCare Clinic
WRH
Windsor
MCH-HHS
Hamilton
CHEO
Ottawa
SRH
Sudbury
OSMH
Orillia
SickKids
Toronto
CHEO
Ottawa
CH-LHSC
London
TOHRCC
Ottawa
SRHC
Newmarket
GRH
Kitchener
SickKids
Toronto
KGH
Kingston
MCH-HHC
Hamilton
CVH
Mississauga
PMH
Toronto
RVHS
Toronto East
KGH/KRCC
Kingston
Five-Year Average Annual
Satellite Activity in Ontario 1,2
FY 2005/06 – FY 2009/10
New Referrals
119
Patients Treated 3
328
Ambulatory Visits
4,256
Inpatient Days
827
Inpatient Admissions
232
Average Length of Stay (in days)
3.6
Source: Annual Service Metrics Reports submitted by Satellite Nurse Coordinators
1.Sudbury Regional Hospital (SRH) provides long-term follow-up to a portion of the patients followed
for AfterCare due to the distances from their tertiary centres. These cases have been excluded from
Satellite service volumes from FY 2006 to FY 2010 inclusive.
2.A seventh Satellite centre, Southlake Regional Health Centre, Newmarket, began operation of its
Satellite program in February 2009.
3.Patients Treated include POGO’s Satellite clinic new referrals and ongoing cases.
Five-Year Average Annual
AfterCare Service Volumes in Ontario
FY 2005/06 – FY 2009/10
Pediatric and Adult AfterCare
New Cases1,2
398
Total Cases Seen1,3
2,114
Total Cases Enrolled 3
(FY 2010 Cumulative)
3,823
AfterCare Visits 1
2,536
Source: Annual Service Metrics Reported by AfterCare Data Managers
1.Sudbury Regional Hospital (SRH) POGO Satellite partner provides long-term follow-up to a portion of the
patients followed for AfterCare due to the distances from their tertiary centres. These cases have been included in
the AfterCare service volumes from FY 2006 to FY 2010 inclusive.
2.New Cases refer to all survivors who have completed treatment for at least 2 years and who are seen in an
AfterCare clinic.
3.Total cases seen refers to new cases plus carry-over seen in AfterCare in the years summarized.
4.Total patients enrolled refers to the total patients enrolled in AfterCare, where they may or may not be served in
a given year but have been seen in AfterCare at least once; does not include patients lost to follow-up, defined as
those who have missed scheduled AfterCare follow-up appointments for 3 or more years.
The Patient Event Model
Patient
Demographics
Snapshot
information
i.e. most current
Patient
Current Status
Patient timeline
Event
Event
Event
Event
Event Name
Temporal
information
Data
Form
Data
Form
Data
Form
Data
Form
Data in temporal context
POGO Mission
• To improve the circumstances of all children afflicted with
cancer, and those of their families and caregivers
• To ensure equitable access to, and availability of, state-ofthe-art cancer care for all Ontario children through
research, planning and advocacy
• To facilitate team-based, multi-disciplinary care - treating
the whole child and the whole family
• To build consensus within the childhood cancer community
re: directions for growth and standards of care
• To carry out cancer surveillance
• To facilitate unique population focused research