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

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

Outline Background Project Objectives Methods Results Conclusions & Implications

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

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

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).

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 2012-2014

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

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

Methods for Cost Data Collection

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

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.

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

IntRegCosting Tool

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

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

Results

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

Resources by budget category

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

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

Distribution of registries’ core activities

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.

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.

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

More Information Florence Tangka Email: FTangka@cdc.gov Thank you for you interest and attention!