SA's cancer data has significant gaps. Now patients can help fix it
- There are significant gaps in the data when it comes to understanding South Africa's cancer burden.
- However, things are set to improve with an initiative that will allow members of the public to assist in data gathering.
- A new patient-led cancer registry will feed into South Africa's existing National Cancer Registry.
Cancer patients and other members of the public now have an opportunity to contribute to improving the quality and completeness of cancer data in South Africa, according to Spotlight.
This follows the recent launch of a new patient-led cancer registry. The project is a joint initiative of Living with Cancer (LWC), an NGO, and the existing National Cancer Registry (NCR) housed in the National Institute for Communicable Diseases (NICD).
While the NCR, Statistics South Africa (StatsSA), and others already provide important information about cancer in South Africa, there are substantial gaps in the existing data. As Spotlight reported last year, cancer incidence and deaths are believed by some to be grossly underreported in the country.
More than 85 000 people were diagnosed with cancer in 2019, and there were just under 44 000 registered deaths due to cancer in 2018, found a StatsSA report on cancer in South Africa (covering the period from 2008 to 2019).
However, the true numbers are likely higher. Salomé Meyer, of the Cancer Alliance, a civil society collective of cancer support organisations and advocates, tells Spotlight that cancer cases are massively underreported, in some cases roughly by 40%.
Associate
Professor Glenda Davison, an expert in Haematology and Immunology at
the Cape Peninsula University of Technology, explains that at the
moment, cancer data in the country comes from the NCR which is overseen
by the National Health Laboratory Services and run by the NICD.
The LWC patient-led registry is the first of its kind in the country, Muchengeti and Belinda Wagner, the founder of LWC, tell Spotlight in a joint response. The registry is now ready to be used by the public after a memorandum of understanding was signed last year between LWC and the NCR.
The patient-led registry, which is accessible via the LWC website, allows individuals to register cancer patients and give information about the patient and their diagnosis.
Muchengeti
and Wagner tell Spotlight that the data is then fed directly into the
existing NCR and used to validate and improve existing data as well as
capture cancer patients that have been missed. The data can also be used
to identify gaps in the NCR's surveillance system. Patients from both
the private and the public healthcare sector can supply data to the LWC
registry.
"We can work together to get a real understanding of the state of cancer in South Africa. The truth is not everyone survives cancer, right? But collectively, we can drive the change and transform the landscape of cancer care in South Africa by harnessing the power of technology and collective action, we can ensure that no one faces this disease alone anymore," she said.