Rédaction Africa Links 24 with AHIT
Published on 2024-02-26 12:54:10
South Africa has taken a significant step in the fight against cancer by initiating the collection of data directly from patients for the first time. This move aims to inform and shape national cancer policies and resource allocation in the country.
The lack of extensive and detailed data has long been identified as a major barrier to improving cancer care, especially in the midst of a national and continent-wide crisis. According to the World Health Organization, Africa sees approximately 1.1 million new cancer cases and 700,000 cancer-related deaths each year.
Mazvita Muchengeti, the head of the National Cancer Registry (NCR) in South Africa, highlighted the importance of accurate data in effectively combating cancer. She emphasized that without correct data, resources cannot be allocated properly, policies cannot be adequately evaluated, and data-driven policies cannot be developed.
Traditionally, the NCR collected data primarily through a pathology-based system, which relied heavily on laboratory data. However, this system provided an incomplete picture of the cancer landscape in the country. To address this issue, a new collaboration was established on January 31 between the NCR and the non-governmental organization Living with Cancer South Africa. This collaboration allows patients or their loved ones to create their own cancer records online.
Patients can register on a digital platform and input details about their illness, providing evidence similar to what laboratories submit to the NCR. The hope is that this improved data collection will lead to tangible changes on the ground, informing national policies and better allocation of resources.
Despite cancer reporting being made compulsory in South Africa in 2011, the data collected through the pathology-based system still leaves gaps. Many cancers are diagnosed outside of the laboratory setting and therefore go unreported, despite the legal requirement. For example, liver cancer is often detected through radiology and clinical deduction, rather than traditional biopsies.
Population-based data collection systems, operated by surveillance officers in two sites in the country, are also used. However, these systems are costly to run. The patient-sourced data will be compared with existing registry data, allowing for the identification of missing information about previously captured patients.
The new system not only allows current cancer patients to register but also permits family members to record historic cancer cases, even in cases where the affected person has passed away. Belinda Wagner, the managing director of Living with Cancer South Africa, emphasized the importance of empowering cancer patients by allowing them to contribute their data.
Living with Cancer South Africa aims to increase registration by providing equipment to aid patients in the registration process. Zodwa Sithole, head of advocacy at the Cancer Association of South Africa, praised the direct involvement of cancer patients in the reporting process, highlighting the potential for patients to be key partners in shaping non-communicable disease policies and programs.
In conclusion, the initiative to collect data directly from cancer patients in South Africa marks a significant step forward in the battle against cancer. By empowering patients to contribute their data, the country is laying the groundwork for more effective policies, better resource allocation, and improved cancer care for all.
