Use of cancer data for cancer control in the Eastern Mediterranean Region: Results of a survey among population‐based cancer registries

Abstract

Data from population‐based cancer registries (PBCR) are critical for planning, monitoring and evaluation of cancer control programs, but are frequently underutilized by key stakeholders. As part of the ongoing partnership of the International Agency for Research on Cancer (IARC) and the WHO Eastern Mediterranean Regional Office (EMRO) in cancer surveillance, we designed a cancer registry survey to assess the level of involvement of PBCR in national cancer control planning across the region. A questionnaire on registry characteristics, their contribution to cancer control and perceived barriers, was sent to 14 countries with operational PBCR. We obtained replies from Bahrain, Egypt, Iraq, Iran, Jordan, Kuwait, Lebanon, Morocco, Oman, Qatar, Saudi Arabia, Tunisia and the United Arab Emirates. We found a high participation of PBCR in cancer control planning (all registries involved, 46% routinely) and the evaluation of screening (92% registries involved, 46% routinely), but a much lower level of participation in palliative care and rehabilitation activities. Specified barriers included poor governance, a lack of awareness by policy makers, insufficient resources and a limited availability of data electronically, including mortality data. Appropriate planning to ensure the sustainability of PBCR (including the employment of permanent staff), increasing training, building research capacity and ensuring an efficient provision of high‐quality data to policymakers, were among the proposed solutions. The results of our study reinforce the need for further tailoring of activities in support of cancer registration and enhanced networking among stakeholders, toward improving quality and use of cancer registry data for cancer control in the EMR.

Staging practices and breast cancer stage among population-based registries in the MENA region

“…This clearly hinders the potential of registries for informing and monitoring public health programmes. Scarce visibility of PBCR data and lack of communication to policy makers was already identified in a previous survey [13] . Provision of feed-back to the oncology clinical community is also key, underlining their importance as primary source of the information while simultaneously aiming to improve completeness and quality of stage information.…”

“…We also found within country variability in staging practices in Algeria, a country that has full coverage by sub-national PBCR [12] . Furthermore, some registries in MENA use multiple stage classification systems simultaneously, a practice that imposes additional workload for registry personnel, particularly in a region where staff shortages and high turnover are common [13] .…”

Epidemiology of women diagnosed with breast cancer in Jordan

“…This outlines the need for international screening programs to bridge inequity in cancer care across countries. 25 , 26 …”

Cancer Research in the Arab World

“…There is a deficiency in population-based studies that can provide incidence, prevalence, mortality, survival, and other data [13]. A recent survey by the International Agency for Research on Cancer (IARC) and the World Health Organization (WHO) Eastern Mediterranean Regional Office on PBCR in 12 Arab and one non-Arab country in the EMR showed that such data has limited availability, including mortality data [32]. During the past 10 years, most Arab countries did not utilize the PBCR to their full potential.…”