Program Director Magdalena Paczkowski and Deputy Director Mine Metitiri discuss the foundational role of cancer registration in addressing this public health burden
Cancer is the second leading cause of death worldwide for people aged 15 and over. To help countries better capture the burden of prevailing cancers, Vital Strategies’ Cancer Registries Program collaborates with ministries of health to establish and bolster population-based cancer registries. These registries are designed to identify all cases of cancer that occur in a defined population—data that can be used to inform public health policy.
Having a sustainable registry system is essential for data-driven planning, which includes mapping, prioritizing and budgeting for cancer control and prevention activities and developing policy. To learn more, we sat down with Cancer Registries Director Magdalena Paczkowski and Deputy Director Mine Metitiri.
What are population-based cancer registries and how can they inform government action to control various cancers?
Cancer registration is a foundation for cancer control but is chronically underdeveloped in low- and middle-income countries. Population-based cancer registries provide critical data on cancer cases and prevalence, causes of cancer, and survival rates. With this knowledge of current patterns of cancer—which also enables the projection of future trends—governments are able to make informed decisions on strategies for prevention, early detection, clinical management and palliative care for people living with illness.
Vital Strategies’ Cancer Registries Program, a component of the Bloomberg Philanthropies Data for Health Initiative, provides a route to institutional sustainability of cancer registries in our focus countries.
What does program support look like in these focus countries? Can you share some success stories?
The program is currently active in Tanzania, Myanmar, Zambia and Vietnam. Each country collaboration includes a combination of strengthening existing cancer registries, building new ones where appropriate, and technical assistance and training activities. Our team supports registry staff in data collection and analysis and in aligning their work with international best practices. We also provide mentorship to strengthen in-country expertise.
In Tanzania and Myanmar, where the program has been active for the past two years, in collaboration with our government partners we have helped country teams establish critical infrastructure for their registries, which includes creating coordination centers to facilitate more direct support between ministries of health and registries. We’ve assisted in drafting standard operating procedures to provide best practice guidance on registry methods and analysis. We have also helped the teams implement new operational plans focused on strengthening registries, sustaining advocacy efforts, and laying the groundwork for future expansion and support.
Core to our work is advancing in-country expertise on cancer registry data collection methodology and analysis. For example, in Tanzania our government partners are now more consistently using this data in annual reporting and health planning. In Myanmar, the ministry of health has linked cancer registry data to policymaking on breast cancer, focused on improvements in early detection and outcomes.
How has COVID-19 affected Cancer Registries Program work?
The pandemic has affected both health-seeking behaviors and cancer care, meaning that people may not feel safe going to clinics, whether for check-ups that might lead to cancer detection or for cancer treatment. This is undoubtedly leading to cancers going undetected, and is a common trend worldwide right now.
For cancer registry team members working in our focus countries, it’s been difficult if not impossible to collect cancer data from hospitals and health centers due to COVID-19 safety concerns. In some countries, colleagues have been mobilized as frontline responders, further shifting the focus and attention away from cancer surveillance and control.
Such challenges are not unique to our program area, and we are working with country teams to adapt. We have refocused our efforts to fill gaps in each country’s health systems and processes, to better align with the population-based cancer registries. For example, we are working to connect data on mortality to cancer registry data processes to develop a better understanding of deaths due to cancer within a specific locality or population. Teams are also working to finalize data collection and start analyses of data from thousands of cancer patients collected last year. Having complete 2019 data for all population-based cancer registries will provide continued guidance for decision-making related to cancer control.
What are some actions that governments can take now to expand the collection and use of cancer data long-term?
It is important for governments to invest in information and communications technology capacity, including robust electronic health data management systems. Having the technology to handle health records greatly improves a government’s ability to maintain routine data collection and management, and relieves data collection teams from having to make frequent visits to health clinics and hospitals. It also allows for more timely dissemination of data to inform decision-making.
Strong health information frameworks lay the foundation for thriving surveillance systems—allowing for effective data use not only for cancer control, but also for other noncommunicable diseases, communicable diseases, and vital statistics such as births and deaths. These critical inputs provide governments with the ability to allocate resources and design policies and programs that will have the most impact on people’s health.
The Data for Health Initiative is a global effort supported by Bloomberg Philanthropies and the Australian Department of Foreign Affairs and Trade. It provides technical assistance to low- and middle-income countries worldwide to improve public health data systems at the national level, including improving civil registration and vital statistics systems, maximizing the use of data to enhance public health policymaking and decision-making, establishing and strengthening national cancer registries and more. Vital Strategies serves as an implementing partner.