When Chimsi*, a young girl from Tamale, Ghana, was 2 years old, her parents spotted a white glow in her right eye. That symptom was a sign of retinoblastoma, the most common eye cancer among children in Ghana. Although brought to a clinic soon after displaying symptoms, Chimsi was left untreated for months because of an initial misdiagnosis, which caused delayed medical referrals. Within 13 months, she died.  

That outcome was avoidable. In countries with population-based cancer registries, such as Gambia [PDF], a case such as Chimsi's triggers data that informs cancer awareness campaigns, strengthens medical referrals and treatment plans, and saves lives. In Ghana, scores of children with treatable cancers could be saved by a similar registry.

The true burden of childhood cancer in Ghana is unknown. For years, public health experts estimated that 1,500 children in Ghana develop cancer annually, but that number is not based on population data and could be underestimated. Yet the health-care system only counts about 500 children annually. To capture the remaining children, Ghana needs to focus on early-diagnosis campaigns that identify common cancers and when they present so that health-care professionals can treat patients in a timely manner. Ultimately, policy follows numbers, which influence access to diagnosis.

Ghana needs to move from guesswork in childhood cancer control to informed governance by creating a countrywide population-based childhood cancer registry

A population-based childhood cancer registry is a systematic and legally backed way of identifying cancer cases in a defined population regardless of where the diagnosis is made or where the patient is treated. Such a registry links data from hospitals, pharmacies, pathology laboratories, imaging centers, radiotherapy facilities, and surgical theaters.

When a registry is robust, health systems can better prepare for the cancer burden by developing treatment plans, training specialized oncology health workers, procuring anticancer medicines, and knowing where to build cancer treatment centers and radiotherapy machines.

Robust data collection also allows health practitioners to measure whether reforms are working. As a country within the World Health Organization Global Initiative for Childhood Cancer (WHO-GICC) focus, Ghana needs to move from guesswork in childhood cancer control to informed governance by creating a countrywide population-based childhood cancer registry.  

The Need for Accurate Tracking

Ghana has a population of 35 million people, and 40% are younger than 18 years. Most health care is provided by the government through the Ministry of Health and its largest agency, the Ghana Health Services. The health-care system has five levels of providers: health posts, the first level of primary care in rural areas; health centers and clinics; district hospitals; regional hospitals; and tertiary, or specialty, hospitals. The Ghana Health Service oversees those health facilities, with the exception of teaching hospitals, which are part of public universities.

Because there is no unified system that accommodates data from the entire health-care system, health-care data fragmentation persists. Although Ghana has expanded its National Health Insurance scheme to include four childhood cancers, has shortened referral pathways to enhance early diagnosis, and is working to cover an additional five childhood cancers by the Ghana Medical Trust Fund, high-quality data for childhood cancer control is deficient. Without accurate baseline data, the country cannot accurately measure impact.  

The absence of a population-based cancer registry in Ghana is a symptom of divisions in global health governance. Causes of such fragmentation include the growing number of global health programs, which run parallel to existing health systems and do not strengthen or sustain coordinated disease surveillance. Efforts to establish a cancer registry compete with a system dominated by vertical programs focused on high-profile diseases such as malaria, tuberculosis, and HIV, whereas less visible conditions, such as childhood cancer, receive fewer resources. Although those vertical programs have reduced malaria by threefold over 10 years, led to declines in HIV incidence since 1990 and tuberculosis since 2000, the story is different for childhood cancer.  

Why the System is Compromised

Earlier attempts by the International Agency for Research on Cancer to establish a cancer registry in Kumasi used a department-based registry that sought to report all cancer cases diagnosed and treated at the Komfo Anokye Teaching Hospital. That registry, however, only noted the location of the cancer in the body and not the cell type involved.

Although that type of classification system works for adult cancers, childhood cancers require a system that tracks the cell type involved. That means that when health systems use adult registration methods for childhood cancers, they can fail to specify accurately the type of cancer in a child. Consequently, the data produced cannot effectively inform national planning for cancer control for children.

As a result, many Ghanaian children with cancer, whose survival depends on timely, well-coordinated care, are not captured in national statistics.

The Way Forward

Historically, teaching hospitals—which have the infrastructure for cancer diagnosis and treatment including radiotherapy—have treated most childhood cancers, and the Ghana Health Service, through the district health information management system [PDF], manages the bulk of routine health data used for national planning. That system, used to guide policy decisions, has the capacity to accommodate a national population-based cancer registry with a separate classification and coding system for childhood cancers. Because those agencies are not integrated, many childhood cancers fall through the cracks. Ghana needs to build a registry that integrates teaching hospitals' data with national data systems to include cancer cases for both children and adults.

Imagine a patient like Chimsi, living where the health system truly counts every child with cancer. When the right number guides decisions and trained professionals are within reach, her cancer is spotted, diagnosed early, and treated without delay. She survives with her sight, her childhood, and her future intact.

When data drives care, children are saved by design and not lost to chance. Come 2030, when Ghana renders account for its efforts in the WHO-GICC effort to increase childhood cancer survival to at least 60%, the story should be accurate. Every child affected by cancer in Ghana has a name, an address, and a right to be seen by the system built to save them.

*EDITOR'S NOTE: Name changed to protect her identity.