1. Costs of Operating Population-Based Cancer Registries: Results from Four Sub-Saharan African Countries
Florence Tangka, PhD
Senior Health Economist, Division of Cancer Prevention and Control, CDC
NAACCR/IACR Combined Conference
June 13, 2019

2. Contributors CDC African Cancer Registry Network Florence Tangka
Mona Saraiya
RTI
Sujha Subramanian
Patrick Edwards
Nairobi Cancer Registry
Anne Korir
Kampala Cancer Registry
Henry Wabinga
African Cancer Registry Network
Maxwell Parkin
Biying Liu
Zimbabwe National Registry
Eric Chokunonga
Margaret Borok
Seychelles Cancer Registry
Anne Finesse

3. Outline Background Project Objectives Methods Results
Conclusions & Implications

4. Burden of Cancer in Limited Resource Settings
Source: Globocan 2012, World Health Organization

5. Percentage of Population Covered by Cancer Registries
Source: The Cancer Atlas, American Cancer Society. Provided courtesy of IARC

6. Convened by the International Agency for Research on Cancer (IARC) in 2011
Aims to increase global capacity for cancer surveillance
by helping to strengthen, expand or start new registries via establishment of IACR regional resource centers (hubs).

7. Background Some prior costing information
Importance of collecting cost data
Inform global, national, regional, and local stakeholders
Budget planning
Identify efficiencies and areas for improvement
Comparative cost data
Sustainability
Some prior costing information
2013 study reported US $8-9 to register a cancer case in SSA
Another prior study reported $10-$16 to register a cancer case in Nairobi and Kampala during

8. Critical and Missing Information
Critical information
Knowledge of cancer registry operations
Gathering, processing and checking data quality
Missing information
What are the quantities and value of resources needed to operate cancer registries? i.e. what is the cost of cancer registry operations?
Need standardized method to conduct cost assessments of cancer registries in international settings
US Economic Analysis of NPCR provided the foundation

9. Study Objective
To estimate the cost of cancer registration in 4 countries in Sub-Saharan Africa
Cost per incident case
Cost per inhabitant
Cost of cancer registry activities

10. Methods for Cost Data Collection

11. Quality review and analysis
Methods
Adapted tool based on Excel-based costing in US and international settings
IntRegCosting Tool has 10 modules
Develop tool
Nairobi
Kampala
Zimbabwe
Seychelles
Select registries
Series of webinars; User’s Guide
In-person meetings to introduce staff to costing assessment
Training
Detailed cost information reported for 1 year
Data collection
Assess ability to allocate cost to specific activities & generate activity-based cost
Quality review and analysis

12. Development of the IntRegCosting Tool
The web-based IntRegCosting Tool was designed to collect and analyze data on the costs of population-based cancer registries all around the world.
Includes data-entry modules that collects information on registry operations and resource use across various budget categories and registry activities.
The tool was adapted based on prior evaluations of NPCR along with pilot-testing an Excel-based version in international settings.

13. Data entry modules Registry Operations Personnel Other Costs
Registry Background
Funding Sources
Data Collection Approach
Narrative Feedback
Personnel
Registry Personnel
Personnel Activities
Other Personnel
Other Costs
Computers, Travel, Training, and Other Materials
Software
Overhead & Administrative

14. IntRegCosting Tool

15. Cancer Registry Activities
Management
Liaising with stakeholders
Outreach
Training of registry staff
Training of others by registry staff
Data collection/abstraction
Case consolidation & matching
Data entry
Data validation
Database management
Developing analytic files
Data analysis/reporting
Formal reporting requirements
Quality control
Death certificate clearance
Sharing cases
IT support
Electronic case reporting and data encryption
Automatic casefinding using electronic linkages
Linking records to other databases
Implementing a cancer inquiry response system
Research studies and advanced analysis using registry data
Publications
Active follow-up

16. Registries’ reporting dates
Cost Data
Cancer incident cases
Kampala
2015
2013
Zimbabwe
Nairobi
2011
Seychelles

17. Results

18. Registry Characteristics
Kampala Cancer Registry
Zimbabwe National Registry
Nairobi Cancer Registry
Seychelles National Cancer Registry
Country
Uganda
Zimbabwe
Kenya
Seychelles
Income category
Low
Lower-middle
High
Years of operation 63 32 16 9
Host institution type
Public university
Health Department
Research institute (government)
Population covered
2,700,000
13,061,239
3,400,000
96,858
Area covered (sq KM)
1,914
390,757
695
459
Cancer cases
1,735
6,548
2,099
172
Reportable disease N Y
Number of sources (total) 11 23 24 10
Sources of Funding 2 5

19. Resources by budget category

20. Cost per case by budget category (US $)
Kampala
Zimbabwe
Nairobi
Seychelles
Registry Personnel
1.90
5.70
19.82
35.68
Other Personnel
1.04
2.29
0.72
3.16
Computers, Travel, Training, and Other Materials
2.59
1.80
9.63
38.26
Software -
0.01
0.75
Overhead/Indirect
3.09
0.65
3.03
17.79

21. Registries’ Cost per case and inhabitant (US $)
Kampala
Zimbabwe
Nairobi
Seychelles
Total Cost per Case
8.62
10.45
33.19
95.63
Total Cost per Inhabitant
0.01
<0.01
0.02
0.17

22. Distribution of registries’ core activities

23. Key findings
There is variation in the cost of operating population-based cancer registries in SSA.
Cost of processing a cancer case and cost per inhabitant were lower in Uganda, Nairobi, and Zimbabwe than in Seychelles.
Cost of cancer registration at the population level is less than one-fifth of US $1.

25. Policy Implications
The detailed cost information may be useful as some SSA countries expand registries’ activities or establish new population-based registries.
New and expanded registries can leverage the experiences and lessons learned to promote efficient operations.
Cost results provide additional evidence-base to inform funding and resource allocation decisions to advance cancer registration in the region.

26. Project Limitations
Small sample – not large enough to capture all potential differences among registries in SSA and may not be generalizable to all registries in region
Retrospective data collection
Registry funding may vary year to year
Registries studied were often embedded within large institutions, making it difficult to accurately estimate the total value of resources specific towards cancer registration

27. More Information Florence Tangka
Thank you for you interest and attention!