Johannesburg — South Africa has begun collecting data on cancer directly from patients for the first time, to help shape national cancer policies and resourcing.
A lack of extensive and detailed data has long been recognised as a barrier to improved cancer care, amid a national and Africa-wide crisis.
According to the World Health Organization, there are around 1.1 million new cancer cases and 700, 000 deaths from cancer in Africa each year.
"With every registration, it takes us one step closer towards the future where cancer is no longer a death sentence, but a chapter in a story of resilience and triumph."Belinda Wagner, managing director, Living with Cancer South Africa
Mazvita Muchengeti, head of department of South Africa's National Cancer Registry (NCR), told SciDev.Net: "The problem is that we are underestimating cancer and without correct data, we are not able to allocate resources properly, measure if our policies are working properly, and have data-driven policies."
For decades, the NCR has collected data using primarily a pathology-based system, which relies heavily on laboratory data and gives and incomplete picture, according to Muchengeti.
Now a new collaboration launched on 31 January between the NCR and the non-governmental organisation Living with Cancer South Africa allows patients or their loved ones to create their own cancer records online.
Those affected can register on a digital platform and log the details of their illness, including evidence, in the same way that the NCR requires from laboratories.
It is hoped that improved registered statistics will result in practical changes on the ground, informing national policies and resource allocation.
Data gaps
Cancer reporting was made compulsory in the country in 2011.
However, Muchengeti explains that the pathology-based system leaves data gaps because cancers might be diagnosed outside of the laboratory systems, and therefore go unreported, despite the legal requirement.
For example, she says liver cancer is most often found through radiology, tumour markers, and clinical deduction, not biopsies sent to laboratories.
"So, we might report far fewer liver cancers than the reality, but if we have this information, where a liver cancer patient has uploaded this, we will then know how much we are missing, and this will help us as we inform the department to make its plans."
Population-based data collection systems, using surveillance officers, are also used but operate from only two sites in the country and are expensive to run.
The surveillance officers get details on cancer cases from healthcare facilities, hospices, and death records and report it.
Muchengeti explains that the patient-sourced data will be added to, and compared with, the existing registry. The existing registry will then be updated to include missing information about already captured patients.
If a patient in the Living with Cancer database is not on the National Council Registry, the team will contact the healthcare facility that confirmed the diagnosis. They will then be instructed to provide not only the patient's details, but also all cases identified since 2011.
Historic cases
As well as allowing current cancer patients to register, the new system allows family members to record historic cancer cases, including if the affected person has died.
Belinda Wagner, managing director of Living with Cancer South Africa, set up the charity in 2017 after being diagnosed herself with a rare cancer. She tells SciDev.Net: "I think what's important here is that it also empowers us as patients who have gone through a cancer journey.
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"We feel that in some small way, we can give back because by giving your data, you are supporting the cancer crisis."
Living with Cancer South Africa intends to boost registration by providing NCR surveillance teams with equipment that help patients register, says Wagner.
"With every registration, it takes us one step closer towards the future where cancer is no longer a death sentence, but a chapter in a story of resilience and triumph," Wagner adds.
Zodwa Sithole, head of advocacy at the Cancer Association of South Africa, welcomed the direct involvement of people living with cancer in the reporting process.
"If meaningfully engaged [they] can be key partners and drivers in the co-creation, implementation and evaluation of non-communicable disease policies, programmes, and services," she said.
This piece was produced by SciDev.Net's Sub-Saharan Africa English desk.
