In 2019, more than 85,000 people were diagnosed with cancer, and in 2018, just under 44,000 people died from cancer.
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- There are significant data gaps in understanding South Africa's cancer burden.
- However, efforts to enable the public to assist in data collection are poised to improve the situation.
- The new patient-led cancer registry will be integrated into South Africa's existing national cancer registry.
According to Spotlight, cancer patients and other members of the public have the opportunity to contribute to improving the quality and completeness of South Africa's cancer data.
This follows the recent launch of a new patient-led cancer registry. This project is a joint initiative between the NGO Living with Cancer (LWC) and the existing National Cancer Registry (NCR) housed at the National Institute of Infectious Diseases (NICD).
Although NCR, Statistics South Africa (StatsSA) and others already provide important information about cancer in South Africa, there are significant gaps in existing data. As Spotlight reported last year, some believe cancer incidence and mortality rates are grossly underreported in this country.
According to the StatsSA report on cancer in South Africa (covering 2008-2019), more than 85,000 people were diagnosed with cancer in 2019, and 44,000 people died from cancer in 2018. It turned out that he was recorded as weak.
However, the actual number may be higher. Salome Meyer of Cancer Alliance, a civil society group of cancer support and advocacy groups, told Spotlight that cancer cases are significantly underreported, in some cases by as much as 40%. He said he has not done so.
Associate Professor Glenda Davison, an expert in hematology and immunology at the Cape Peninsula University of Technology, explains that currently the country's cancer data comes from the NCR, which is overseen by the National Health Inspectorate and run by the NICD. .
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“The data collected here comes from the laboratory including tumor and cancer pathology as well as the type of cancer recorded. This includes all histology, cytology and bone marrow results. It also includes demographic data such as 'age, gender, and population group,' she says.
“We also have childhood cancer registries because childhood cancers are often different from adults. The data includes information on pathology and all diagnostic criteria, including patient demographics. It has been criticized for lacking details about cancer types, services available to patients, and treatments.
“Also, not all details are reported and there is a lot of under-reporting. Therefore, the incidence is probably much higher than reported. Therefore, the overall picture of cancer prevalence in SA is It’s still unclear.”
There are also selected population-based cancer registries, currently based in Gauteng and KwaZulu-Natal, that provide cancer data that is representative of the South African population, said the head of the NCR department. Dr. Mazvita Muchengeti explained at a press conference. -The led cancer registry was launched at the end of January.
“Reliable cancer statistics are essential for planning cancer prevention and control interventions in the health sector.” On the launch of the population-based cancer registry in KZN, Deputy HOD of the SA National Cancer Registry Dr. Mazvita Muchengeti @MLCCProgramKZN #Sider pic.twitter.com/Jz3IbyBnnW
— NICD (@nicd_sa) February 28, 2023
He said population-based registries, considered the gold standard in cancer surveillance, have a place where all data about cancer cases within a particular population is collected. This means that the surveillance team counts not only cancers diagnosed by radiological tests, symptoms and other signs, but also cancers diagnosed by pathology reports. The Registry generates reports regarding the specific regions in which it operates. For example, the Gauteng provincial registry is located in Ekurhuleni district and collects data only on cancer cases in that district.
This differs from pathology-based registries, where cancer cases are identified only through pathology reports performed in a laboratory.
“It is not possible to do a population-based registry across the country because it is very expensive and because it is active surveillance that involves nurses going into hospitals. [and] Hospices collect cancer data and look at patient records,” Muchengeti says.
How the new patient-driven registry works
LWC's patient-led registry is the first of its kind in the country, Muchengeti and LWC founder Belinda Wagner jointly told Spotlight. Last year, a memorandum of understanding was signed between LWC and NCR, making the registry available for public use.
The Patient-Initiated Registry, accessible through the LWC website, allows individuals to register cancer patients and provide information about the patient and their diagnosis.
Muchengeti and Wagner told Spotlight that the data will be input directly into the existing NCR and will be used to validate and improve existing data, as well as catch missed cancer cases. This data can also be used to identify gaps in NCR's surveillance system. Patients from the private and public healthcare sectors can contribute data to the LWC registry.
Muchengeti revealed:
The patient-driven registry will be compared to the NCR database and used to fill gaps and identify new data sources that may be systematically missing from the registry.
“Identifiers such as names, IDs, and diagnosis locations are compared between the two registries to check for those already present in the registries, including important information (such as population groups that are often missing in private sector data). This information can be added to the NCR record if it is missing.
Speaking at a press conference where the registry was launched ahead of World Cancer Day on February 4, Mr Wagner said that while the LWC is South Africa's first patient-led registry, it will also provide participants with access to support and supportive resources. added. in their cancer journey.
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“Together we can truly understand the current state of cancer in South Africa. The truth is, not everyone will survive cancer, right? But together we can make a difference. “With the power of technology and collective action, we can ensure that no one ever faces this disease alone.” she said.
Commenting on the registry, Davison said it was “a very valuable initiative in terms of providing patient-driven information and tracking of patients' progress, which is lacking in national registries.”
patient privacy
An obvious concern some users have with such systems is data privacy and security.
“We recognize the need to protect sensitive information and ensure that we comply with South African data protection laws, in particular the POPI Act,” Muchengeti and Wagner told Spotlight .
“Our employees, volunteers, and associates comply with this policy. We are committed to ensuring privacy, security, and compliance with the POPI Act.”
Yesterday, the National Cancer Registry (NCR) within the NICD joined the Pink Drive at a World Cancer Day event in Laudium, Pretoria. The event was attended by Health Minister Dr Joe Faala and Gauteng MEC for Health. @NkomoNomantu. pic.twitter.com/9wDgEcLb5G
— NICD (@nicd_sa) February 7, 2024
They stated that the data is stored in a secure database at Afrihost (an internet service provider) and that database privileges prevent LWC officials from accessing the actual data, only allowing them to report on the data. Masu.
“Data is exported to NCR using API [Application Programming Interface], double check that all data transfers are encrypted to protect your records. Similar exports are used by pathology laboratories when reporting to the NCR,” they say.
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At the presentation, Muchengeti told Spotlight that under Article 380 of the National Health Act, NCR staff are permitted to view patients' identifiable data (both in the NCR and LWC registries). , said that data will be collected, analyzed and analyzed. I will compile it into a report. However, data that contains patient-level information that is identifiable to everyone. The only data released so far by NCR is aggregated data.
“Our data processing includes database-wide deduplication (dating back to 1986) to ensure that cancer recurrences are not counted as new cancers when a patient was first diagnosed several years ago. Therefore, duplicates have been removed and the source of the data is shown in the pathology report, which cancers are reported from the private sector and which cancers are reported from public sector laboratories (NHLS). “We know what happened,” she added.
Reasons for underreporting
Meyer told Spotlight there are several reasons for the underreporting of cancer data. These include the fact that although the NCR is a pathology-based registry, not all cancers are diagnosed by pathologists' reports and that some cancers remain undiagnosed. It is included.
Meyer also identified issues within the public sector, including lack of access to the health care system, inefficiencies in the referral process within the system, lack of patient knowledge, and the presentation of symptoms to the health care system only in the terminal stages of the disease. , cited as a contributing factor to underreporting. Of cancer.
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Meyer also said that because deaths are not reported by primary cause of death in this country, a cancer patient could die from a heart attack, and the cause of death listed would be “heart attack,” not cancer, and therefore It also emphasizes that it is not included in data on cancer. death.
Traditional leaders can also report causes of death, but they do not necessarily have the medical training to do so accurately, which also poses challenges to the accuracy of cause of death data.
Spotlight contacted the country's Ministry of Health for comment on its role in the database, but did not receive a comment by the time of publication.