1. IACR 2016 Annual Scientific Meeting 20 October 2017 Marrakech, Morocco
Economics of Cancer Registries The cost to sustain & improve registries for cancer control planning
Florence Tangka, PhD, MS
Division of Cancer Prevention and Control
Centers for Disease Control and Prevention (CDC)
IACR 2016 Annual Scientific Meeting
20 October 2017
Marrakech, Morocco
National Center for Chronic Disease Prevention and Health Promotion
Division of Cancer Prevention and Control/ Epidemiology and Applied Research Branch

2. International Contributors CDC’s Economics of Cancer Registration Project
Florence Tangka, PhD – Project lead
Mona Saraiya, MD, MPH
Rachael Joseph, VMD, MPH
IARC
Freddie Bray, PhD
Max Parkin, PhD
Les Mery, PhD and Marion Piñeros, PhD
RTI International
Sujha Subramanian, PhD
Patrick Edwards, BS
Sonja Hoover, MPP
Maggie Cole-Beebe, PhD
Barbados
Tanya Martelly
Colombia
Esther De Vries, PhD
Constanza Pardo, MHA
Carolina Wiesner, MD
Cancer Registry Staff
India
Rajesh Dikshit, PhD
N Panse
R Swaminathan, PhD
Shravani Koyande, PhD
Kenya
Anne Korir
Nathan Buziba, PhD
Robai Gakunga, DVM
Gladys Chesumbai
Nathan Okerosi
South Africa
Ntuthu Somdyala
Uganda
Henry Wabinga, Prof
Martin Ogwang, MD
Francis Okongo, BSc (Hons)
Sarah Nambooze and Phoebe Mary Amulen
Zimbabwe
Eric Chokunonga 2

3. Outline Project Motivations Economics of Cancer Registration in the US
Cancer burden in limited resource settings
State of cancer registration
Global Initiative for cancer registry development
Economics of Cancer Registration in the US
Key research questions, Method & Results
Economics of Cancer Registration in International Settings
Project objectives, Methods & Results
Importance of Economic Analysis of Cancer Registry Operations
Upcoming Cancer Epidemiology Monograph
Project Status and Next Steps
UICC 2016 Workshop on Economics of Cancer Registration 3

4. project motivations

5. Burden of Cancer in Limited Resource Settings
Source: Globocan 2012, World Health Organization 5

6. State of Cancer Registration Percentage of Population Covered by Cancer Registries
Source: The Cancer Atlas, American Cancer Society. Provided courtesy of IARC 6

7. Aims to increase global capacity for cancer surveillance
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

8. Well Established Processes for Cancer Registration8

9. Critical and Missing Information
Critical information
Knowledge of cancer registry operation
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 operation?
Need standardized method to conduct cost assessments of cancer registries in international settings
US Economic Analysis of NPCR provided the foundation 9

10. ECONOMICS OF CANCER REGISTRATION IN THE US Development of the International Registry Costing Tool (IntReg Costing Tool)

11. CDC’s National Program of Cancer Registries
Established by US Congress in 1992 & administered by the CDC
CDC’s NPCR collects data on cancer occurrence and the type of initial treatment
NPCR Funded Programs
45 states DC
Puerto Rico
US Pacific Island Jurisdictions 11

12. CDC’s NPCR Key Economics Questions
What are the funding sources for cancer registries?
How much does it cost to register a case of cancer?
What is the cost per case for specific registry activities?
What factors impact the efficiency of operating a registry? 12

13. Economics of NPCR Study Team
CDC
Florence Tangka, PhD
Frances Babcock, CTR
Hannah Weir, PhD
RTI International
Sujha Subramanian, PhD
Maggie Cole-Beebe, PhD 13

14. Methods Used to Answer Economic Questions
Initiated by CDC in 2005
Conducted site visits to 4 registries
Developed and pilot-tested a standardized Cost Assessment Tool in 5 registries
Collected and analyzed 3 years of cost data from NPCR-funded registries 14

15. Share of Registry Funding by Source (U.S.)
What are the funding sources of a cancer registry?
Source: Tangka et al. J Public Health Manag Pract Dec 3

16. Average Cost per Case: Core and Advanced Activities (U.S.)
Data from 40 NPCR registries. Excludes data from registries in states also supported by SEER (CA, GA, LA, KY, MI, NJ, WA). Also excludes data from PIJ due to low case volume.
Source: Tangka et al. J Public Health Manag Pract Dec 3 16

17. Source: Tangka et al. J Public Health Manag Pract. 2015 Dec 3

18. Cost per Case by Case Volume (U.S.)
What factors impact the efficiency of operating a registry?
Data from 40 NPCR registries. Excludes data from registries in states also supported by SEER (CA, GA, LA, KY, MI, NJ, WA). Also excludes data from PIJ due to low case volume.
Source: Tangka et al. J Public Health Manag Pract Dec 3 18

19. Peer-reviewed Publications (1)
Beebe MC, Subramanian S, Tangka FK, Weir HK, Babcock F Trebino D. A Framework for Collecting, Analyzing, Disseminating, and Utilizing Cancer Registry Cost Data. Under Review - AJE 19

20. Peer-reviewed Publications (2)20

21. ECONOMICS OF CANCER REGISTRATION IN INTERNATIONAL SETTINGS: Adaptation of the IntRegCosting Tool

22. CDC’s Division of Cancer Prevention and Control Organizational Chart22

23. Priority Areas of CDC’s OICC
Works on preventing and controlling cancer in limited resource settings both in the US and abroad.
Improving cervical (and breast) cancer screening and surveillance
Improving cancer registration and use of registry data
Capacity building and technical assistance
Translating lessons learned from work done in the US to international settings and vice versa 23

24. Study Objectives To estimate cost
Per cancer case registered
Per inhabitant served by cancer registry
To identify sources of support (monetary and nonmonetary) for cancer registries operations
To estimate the percentages of resources allocated to fixed and variable cost activities for operating cancer registries
To determine the percentage of total registry cost devoted to labor 24

25. Quality Review and Analysis
Methods (1)
Adapted tool developed for the U.S.; IntRegCosting Tool has 10 modules
Develop tool
12 registries from 5 countries; 2 additional countries started this year
Select Registries
Visited collaborating registries in each country
Site Visit
Excel version of tool use to collect data
Pilot Test
Training
Hosted webinars and provided technical support
Quality Review and Analysis
Assess ability to allocate cost to specific activities & generate activity-based cost

26. Methods (2) Collect multiple years of data - 2012–2016 Country
Registries
Rounds
Ongoing
Kenya 2 XX
Round 3
India X
Colombia 5
Round 2
Uganda
Barbados 1
South Africa
Round 1
Zimbabwe 26

27. Countries Participating in Pilot Testing the IntRegCosting Tool
Kenya: Nairobi, Eldoret
India: Barshi, Mumbai
Colombia: Barranquilla, Bucaramanga, Pasto, Manizales, Cali
Uganda: Kampala, Gulu
Barbados: Barbados National
South Africa: Eastern Cape Province
Zimbabwe: Zimbabwe National 27

28. IARC Regional Hubs
Currently in partnership with registries in the following regional hubs: Sub-Saharan Africa (yellow), Caribbean (pink), Latin America (red-orange), and South, East, and South-Eastern Asia (green)
Source: World Health Organization. 28

29. Data-Entry Modules in the IntRegCosting Tool
The CDC’s International Registry Costing Tool (IntRegCosting Tool) is an excel-based data collection instrument that cancer registries use to enter monetary and nonmonetary contributions along with detailed expenditures over a given year to derive the value of all resources required to operate the registry.
Data-Entry Modules in the IntRegCosting Tool
1. Registry details
6. Consultant expenditures
2. Expenditures
7. Computers, travel, training, and other materials expenditures
3. In-Kind Contributions
8. Software used and licensing expenditures
4. Personnel expenditures
9. Administrative expenditures
5. Personnel activities
10. Factors affecting registry operations 29

30. Registry Activities Available in the IntRegCosting Tool
Fixed Cost Registry Activities
Management
Reporting requirements
Administration
Outreach
Training of registry staff
Liaising with stakeholders
IT support
Variable Cost: Core Registry Activities
Case ascertainment
Data validation
Death certificate clearance
Developing analytic files
Data collection
Database management
Data abstraction
Data analysis and reporting/tabulation
Data entry
Quality assurance
Case finding
Sharing cases
Coding
Training for registry staff
Variable Cost: Other Registry Activities
Developing proposals for funding
Implementing a cancer inquiry response system
Electronic case reporting and data encryption
Research studies & advanced analysis using registry data
Automatic case finding using electronic linkage
Publication of research studies using registry data
Linking records to other databases
Active follow-up
Training of others by registry staff 30

31. Results

32. Registry General Characteristics, Activities, and Staffing
Range
Years of operation
9 – 62
Population covered
277,814 – 17,443,311
Square kilometers covered
121 – 11,820
Proportion of data reporting by paper
30% – 100%
Number of reporting or data sources
12 – 180
Incident cases
300 – 19,485
Registry Activities
Percentage of Registries
Reportable disease
36%
Perform active follow-up
55%
Collect and report nonresident cases
45%
Perform death clearance
Included in Cancer in Five Continents (CI5)
64%
Registry Staffing (Full Time Equivalents)
Management and administrative staff
1 – 3
Registrars and data collectors
1 – 17
Database management and IT support staff
0 – 8
Researchers, investigators, and medical personnel
0 – 3 32

33. Distribution of Total Resources by Source33

34. Allocation of Resources to Fixed and Variable Costs34

35. Percentage of Total Registry Costs Devoted to Labor35

36. Cost per Case Registered and Cost per Inhabitant Served by Registry
a The costs were reported by cancer registry representatives for the following periods: Nairobi annual average July 2012–June 2014; Kampala 2014; Mumbai FY 2014–2015; Colombian registries b Currency converted from local currency to USD for Nairobi, Kampala, and Mumbai during 2014 and all Colombian registries during c For incident cases diagnosed numbers, we used the following annual periods: Nairobi annual average; Kampala 2012 cases; Mumbai 2012 cases; Colombian registries 2010 cases. d Purchasing power parity (PPP), 2011 International Comparison Program, World Bank. e Cost per inhabitant is defined as the total cancer registry costs for the annual period divided by the total population of the cancer registry coverage area. 36

37. Factors that Affect Registry Cost and Data Quality
Affects Cost
Affects Quality
INTERNAL REGISTRY OPERATIONS
Organization and funding structure (host institution support versus external funding) X
Data collection procedures (paper versus electronic format)
Number and types of data elements collected
Staff turnover and training requirements
Work mix (core data collection versus research activities)
Data exchanged, caseload, and reporting of nonresident cases
EXTERNAL FEATURES
Total volume of cases
Number of reporting sources
Number of abstracts versus incidence cases
Size of area served and presence of rural areas
Availability of trained personnel
Cost of living in geographic location
Quality of facility reporting and presence of hospital-based registries
Case reporting mandated by law (reportable disease) 37

38. Key Findings on Economics of Cancer Registration
Cost per case registered varies across registries; cost per inhabitant is less than a quarter of a US $1
Partnering with other institutions is critical for registry sustainability
Labor costs are substantial (at least 50% of total cost)
Fixed cost is a third of total cost, increase in volume can reduce cost – economies of scale
Internal and external factors impact costs 38

39. Importance of Economic Analysis of Cancer Registries
Provide the evidence-base to guide funding decision making
Provide estimates of the resources needed to improve, expand, establish a cancer registry
Provides information that can be used to assess the efficiency of registry activities by estimating the value of resources used in differences approach to collect, analyze and report data
The approach can also be used for evaluating cost of other types of non- communicable disease registration activities
Information can be used to advocate for and effectively allocate resources to improve and sustain cancer surveillance 39

40. cancer epidemiology monograph

41. Upcoming Cancer Epidemiology Monograph (1)
Editorial – Importance of economic evaluation of cancer registration in the resource limited setting: Laying the groundwork for surveillance systems. Lead – M. Saraiya, CDC
Developing and testing a cost data collection instrument for noncommunicable disease registry planning. Lead - S. Subramanian, RTI International
Estimating the cost of operating cancer registries: Experience in Colombia. Lead – Esther de Vries, Colombia
Economic analysis of the Nairobi Cancer Registry: Implications for expanding and enhancing cancer registration in Kenya. Lead – Anne Korir, Kenya 41

42. Upcoming Cancer Epidemiology Monograph (2)
Uganda experience—Using cost assessment of an established registry to project resources required to expand cancer registration. Lead – H. Wabinga, Uganda
Economic assessment of integrated cancer and cardiovascular registries: The Barbados experience. Lead – T. Martelly, Barbados
Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection. Lead – S. Koyande, India
Resource requirements for cancer registration in areas with limited resources: Analysis of cost data from four low- and middle-income countries. Lead – F. Tangka, CDC 42

43. Upcoming Cancer Epidemiology Monograph (3)43

44. PROJECT STATUS

45. Current Status and Next Steps
Development of web-based version of the costing tool
Identifying registries to test the usability of the tool
NEXT STEPS
Test the usability and generalizability of the tool
Disseminate the tool
Train and provide technical assistance 45

46. 2016 world cancer congress workshop on economics of cancer registration

47. 47

48. Thank You! Comments? Questions?
For more information, contact:
Florence Tangka, PhD, MS
Centers for Disease Control and Prevention
1600 Clifton Road NE, Atlanta, GA
Telephone: CDC-INFO
Web:
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. 48