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.