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

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

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

project motivations

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

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

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

Well Established Processes for Cancer Registration 8

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

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

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

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

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

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

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. 2015 Dec 3

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. 2015 Dec 3 16

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

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. 2015 Dec 3 18

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

Peer-reviewed Publications (2) 20

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

CDC’s Division of Cancer Prevention and Control Organizational Chart 22

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

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

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

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

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

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

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

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

Results

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

Distribution of Total Resources by Source 33

Allocation of Resources to Fixed and Variable Costs 34

Percentage of Total Registry Costs Devoted to Labor 35

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 2013. b Currency converted from local currency to USD for Nairobi, Kampala, and Mumbai during 2014 and all Colombian registries during 2013. 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

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

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

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

cancer epidemiology monograph

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

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

Upcoming Cancer Epidemiology Monograph (3) 43

PROJECT STATUS

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

2016 world cancer congress workshop on economics of cancer registration

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Thank You! Comments? Questions? For more information, contact: Florence Tangka, PhD, MS ftangka@cdc.gov Centers for Disease Control and Prevention 1600 Clifton Road NE, Atlanta, GA 30333 Telephone: 1-800-CDC-INFO E-mail: cdcinfo@cdc.gov Web: http://www.cdc.gov 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