Cancer Registration in Low and Middle Income Countries Les Mery Section of Cancer Information WHO-IUMSP NCD PROGRAMME MANAGERS SEMINAR 3 JUNE 2014 LAUSANNE, SWITZERLAND

The Global Burden of Cancer Point 5: What I have shown so far is the current situation. However cancer burden is projected to increase over the next two decades. there is a shift in burden towards the medium and low HDI countries there is also a change in the pattern of cancers being encountered Critical point here is in the footnote: because we know this is not the case NB 19 million by 2025 (millions) 3 Assuming no change in underlying incidence

Projected Global Burden of Cancer (incidence) by Level of Development *assuming rates in 2008 do not change

Focused on partnership solutions Population-based cancer registries play a central role in cancer control programmes as they provide the means to plan, monitor and evaluate the impact of specific interventions in targeted populations In response to the increasing cancer burden and the lack of capacity in low and middle income countries (LMICs), the Global Initiative on Cancer (GICR) was developed The agreed mode of delivery is establishment of regional centres of expertise and registry support - “IARC Regional Hubs” The GICR has phased objectives with a target to provide measurable improvements in the coverage and quality of cancer registries in over 20 LMICs by 2020 and a further 30 LMICs by 2025 Focused on partnership solutions

Outline Context The Response: Global Initiative on Cancer Registry Development Phases of development Next Steps: Key Deliverables Summary

Context: Recognition of the increasing global cancer burden, with transition to LMIC and requisite need to plan for services An estimated 12.7M new cases worldwide in 2008 with greater than 7M having occurred in developing countries; projected to increase to 21M by 2030, with 60-70% estimated in developing countries Services in many LMIC modest at best, often restricted to palliative care Despite a long history of population based cancer registries (PBCRs) in many developed countries few exist elsewhere Range of 83% to 32% reported coverage of high quality PBCRs in developed world in contrast to less than 5% in LMIC Need to act directly links and assist with creating momentum for the World Health Organization (WHO)-led key initiatives to prioritize focus on non-communicable chronic disease (NCD) World Health Assembly Cancer Control Deceleration (2005) United Nations NCD Summit and subsequent Global Monitoring Framework (2012) 7 Ref: GLOBOCAN 2008; IARC (2012) Let’s Figure it Out

Why do Cancer Registries Matter? Cancer registries provide the foundation for cancer control Quantifies burden using population attributes: evidence Basis for interventions and services: planning Serves in evaluation of investments: benchmark progress Extensions to analytic and clinical epidemiology: research 9 Ref: Armstrong, 1992; Parkin, 2008

Response to the Issue: Timeline of Key Events Development of a response Initiation of the GICR Regional Expansion of the GICR 2009 - 2011 2011 - 2015 2015 - 2020 10

Development of a Response: 2009 - 2011 Identification of the need for cancer registries in LMIC long recognized by many Early steps in 2009 began the formation of areas of activities: what is feasible? by whom? when? how? Input from key stakeholders on concepts to strengthen ideas and discuss roles International Agency for Research on Cancer (IARC) responsible for overall leadership and coordination of a global response working together with many partners towards large scale solution 11

The role of the International Agency for Research on Cancer (IARC) Specialized cancer agency of the WHO Objective is to promote international collaboration in cancer research so that preventive measures may be adopted and the burden of disease and associated suffering reduced Particular interest in conducting research in LMICs through partnerships and collaborations with those in these regions Strategic priority areas of the Agency are: Causes and prevention of cancer A global reference for cancer information Global cancer biobank Education and training Producing evidence-based science for global cancer control policies Ref: www.iarc.fr

Representation of IARC Surveillance activities Section of Cancer Information Global Indicators - Collection - Analysis - Dissemination Cancer Incidence in Five Continents GLOBOCAN Support Training Registry Collaboration What is global surveillance Descriptive Epidemiologic Research Routine / ad hoc publications Cutting edge

IARC Technical Publication No. 42 A joint IACR-IARC publication Developed with WHO with financial support from the GAVI Alliance Provides technical advice to planners and health specialists in LMICs wishing to plan/develop population- based cancer registries (PBCR): Role and status of PBCRs worldwide Planning and developing PBCRs Sources of information Quality control Reporting the results

Global Initiative for Cancer Registry Development (GICR) Integral part of the cooperation between WHO and IARC in response to the Global Action Plan for NCDs (2013-2020) and the Global Monitoring Framework. Governance model emphasises collective efforts of GICR Partners in achieving improved global cancer registry capacity: GICR Partners Group (strategic) Hub Executive Group (technical) Donors Group (fundraising) The agreed mode of delivery is establishment of regional centres of expertise and registry support - “IARC Regional Hubs”. Phased objectives with a target to provide measurable improvements in coverage and quality of cancer registries in over 20 LMICs by 2020 and a further 30 LMICs by 2025.

The Global Initiative for Cancer Registry Development (GICR) Develop capacity in LMICs to produce reliable, high-quality information on the burden of cancer. Global network of regional hubs to provide support and training to population-based cancer registries (PBCR) in defined regions Working in 50 countries 2014-18 IARC initiative, backed by a number of major international partners Advocacy and fundraising developed with UICC http://gicr.iarc.fr/

Initiation of the GICR: 2011 - 2015 Formal launch of the GICR Principal Investigators selected and models for four Hubs implemented Development of agreements with countries that have greatest potential for advancement GICR Governance and Objectives developed to provide clarity on delivery mechanism and benefits Establishment of coordinating and management resources at IARC to support Hub development Goal is to provide each Hub with the requisite infrastructure and capacity to support region and to generate momentum Continued development of partnerships to maximize opportunities International, regional and national stakeholders Raising awareness among various disciplines and organizing groups Ref: www.iarc.fr

Six IARC Regional Hubs for Cancer Registration in LMIC IARC Regional Hub for Cancer Registration CENTRAL & WESTERN ASIA AND NORTHERN AFRICA Izmir Cancer Registry, Izmir, Turkey IARC Regional Hub for Cancer Registration SOUTHERN, EASTERN AND SOUTH-EASTERN ASIA Tata Memorial Centre, Mumbai, India IARC Regional Hub for Cancer Registration CARIBBEAN (Planned) Note also the suggestions coming in from South Korea and Gulf States IARC Regional Hub for Cancer Registration Pacific Islands (Planned) IARC Regional Hub for Cancer Registration LATIN AMERICA Instituto Nacional del Cáncer, Buenos Aires, Argentina IARC Regional Hub for Cancer Registration SUB-SAHARAN AFRICA African Cancer Registry Network, Oxford http://gicr.iarc.fr/

The Mumbai Hub In its first operational year, the Hub has: Conducted site visits to 7 countries; Organised 3 training workshops; Trained 3 CanReg5 trainers; Initiated 3 research projects; Launched registry costing exercise; Established website, newsletter and online support mechanism. Advised on and supported capacity building programmes for Sri Lanka, Indonesia and Mongolia

Activities 2012-13 Direct Support Training Advocacy Networking CanReg5 Installation & Assistance Collaborative Agreements: Indonesia (2012) Mongolia (2012) Sri Lanka (2012) Courses: Mumbai (2012) Bangkok (Mar 2013) Jakarta (May 2013) Chennai (Sept 2013) Research Training Advocacy Networking Direct Support Data Quality / Costing: India / Thailand First Registry Reports: Indonesia Mongolia Sri Lanka Cancer in Asia 2003-7 Site visits: Nepal (2012) Bhutan (2013) Thailand (2013) Indonesia (2013) Cambodia (2013) Vietnam (2013) Bangladesh (2013)

http://tmcepi.gov

IACR Annual Meeting. Entebbe, Uganda, 2005 The primary aim of AFCRN is to provide a “Regional Hub” for countries of sub Saharan Africa, in order to: Deliver tailored training in cancer registration methods and use of data; Two 5 day Advanced training courses and two 4 week Practical training courses scheduled in 2012. Provide technical and scientific support to existing and new registries; Coordinate international research projects and to disseminate results of such activities; “Study of breast cancer size and stage in African cancer registries” - funded by ACS “Economic Assessment of the resources required to report high quality cancer registry data: A cost study of Nairobi and Eldoret cancer registries” a research collaboration between KEMRI and CDC Advocate the cause of registration and improve networking among cancer registries. IACR Annual Meeting. Entebbe, Uganda, 2005 Report on Cameroon CR visit Report on Gabon CR visit Report on Ghana CR visit EARN meeting in Arusha, Tanzania 2012 Report on …… CR visit

Regional Expansion of the GICR: 2015 - 2020 Focus on increasing knowledge of cancer registration and control activities at the country level within region Site visits to target countries Technical recommendations accompanied by agreements (one to three years) Coordinate collaborative reports and research projects across the region Transition of greater reliance on the delivery of technical training, support and advocacy by Hubs to regional countries Evaluation of Hub performance to provide learning opportunities and ensure appropriate progress Continued brokering of partnerships within and across the regions Ref: www.iarc.fr

Selected Key Deliverables (1) GICR: Selected Key Deliverables (1) Deliverable Schedule IARC Governance and Project Description Launch of six Hubs Transfer of ‘Basic Registry Training’ courses to Hubs Regional Analysis Reports Population Based Cancer Registries Technical Report Sep 2014 Dec 2014 Jul 2015 Dec 2017 Dec 2018 Regional / Hub level Website and communication products: Mumbai, Africa, Izmir and Argentina Established Infrastructure Regional Network presence linked to Hub Strategic plan for each region: priority countries, network development and training Release of a Regional scientific report Dec 2015 Jul 2016 Sep 2017 Dec 2020 … continued 25

Selected Key Deliverables (2) GICR: Selected Key Deliverables (2) Deliverable Schedule Country Level (in each Hub region) Signed agreements with two countries Site visits and recommendations for four countries Country level reporting Jun 2016 Dec 2018 Dec 2020 26

Summary Population-based cancer registries central in cancer control programmes: planning, delivery and evaluation Increasing cancer burden set against a lack of capacity in low and middle income countries The GICR seeks to create change through the development of regional reference centres (Hubs). Phased objectives with a target to provide measurable improvements in the coverage and quality of cancer registries in over 20 LMICs by 2020 and a further 30 LMICs by 2025 Contact: Les Mery Cancer Information Section, IARC E-mail: meryl@iarc.fr Website: http://www-dep.iarc.fr

Acknowledgements IARC GICR Staff, especially Drs. F Bray, D Foreman and A Znaor Hub PIs and associated staff The GICR Partners

Discussion Items: Ideas to help raise awareness among Member states? Ministries of Health, health care providers, key organizations, and general population 2. How to approach partnerships?