In a country with a history of low cancer survival rates, data can be used effectively to show how prevention, early detection measures and access to treatment can save and extend lives.
Seven years on from the establishment of Kyrgyzstan’s cancer registry, we speak to its head, Dr Elena Ten, about how data can change people’s mind sets. Dr Ten has been a fervent advocate for investment in cancer data collection and analysis in her country since attending a summer school on national cancer registries organized by WHO’s International Agency for Research on Cancer (IARC).
“Through proper monitoring of cancer cases in the population using high-quality data, we can understand what the real burden of cancer is and show the effects of any policy changes,” she insists.
Strengthening national policies
Since 2015, Kyrgyzstan’s cancer registry has been providing crucial information on cancer cases in 3 of the country’s regions, including the largest, Chüy Region.
“The registry acts as a monitoring instrument and as a data hub, allowing us to collect and analyse information on all cancer cases in adults and children in one electronic database. We capture information on the disease stages, numbers and types of treatment in each case, from diagnosis to death or survival,” explains Dr Ten.
“Our role is to provide the Ministry of Health with the results of epidemiological cancer surveillance, which includes summary data on numbers of cases, cancer stage and survival rates of cancer patients as well as information on the effectiveness of cancer prevention measures across the regions.”
In this respect, a population-based cancer registry is different from a hospital-based cancer registry, which is used by clinicians for treatment, management and follow-up of individual patients and by hospital managers for planning, monitoring and evaluating the results of specific actions, such as the introduction of new technologies. Data from a population-based cancer registry can be used to inform and strengthen national policies for cancer prevention, early detection and treatment, therefore providing the backbone of any national cancer control programme.
Collaboration and change
“The goal of the registry is to deliver high quality data to inform all service planning. This is not a straightforward process and involves changing old work practices, from ensuring the proper completion of records to placing greater value on reports underpinned by good data,” continues Dr Ten.
“Each year now, we present our results to medical and scientific associations, describing what has happened at a population level and showing why it’s important to keep improving the quality of our data. Already, the registry is helping to measure cancer inequalities and inform investment decisions for greater impact. Long-term cancer trends will become increasingly apparent in the coming years,” she notes.
Kyrgyzstan’s Ministry of Health decided to create and fund the population-based cancer registry following a WHO/Europe–International Atomic Energy Agency–IARC mission in 2015. The Ministry decided to base the registry across 2 scientific institutions – the Scientific and Production Centre for Preventive Medicine and the National Centre of Oncology and Haematology. This decision represented a new and important collaboration between clinical and public health institutions. WHO follow-up missions were conducted in 2017, 2018 and 2019 to further support the development of the registry.
The new digital registry replaced an older paper-based notification system that had been in place since 1953. Under the old system, it was only oncologists who were obliged to report cancer cases. Now, information must be reported to the cancer registry from all hospitals and any place where a diagnosis of “malignant neoplasm” can be confirmed or where a cancer patient can have treatment.
Identifying gaps and inequalities
One of the key strengths of Kyrgyzstan’s cancer registry is that it collects and analyses data on childhood as well as adult cancer cases. Childhood cancer is largely not preventable and not amenable to screening. It is essential to track cases so that services for early diagnosis and treatment can be delivered where they are needed.
There is suspected under-reporting of childhood cancer mortality in Kyrgyzstan, likely due to delays in registering the death of a child by the family. This was discovered through cross-checking cancer registry data with data from the first children’s hospice established in the country. Cancer registry data also reveals that girls with cancer are underdiagnosed compared to boys. Diagnoses are shown to be much more frequent for working aged people than for children and older people, and diagnostics and treatment for cancer patients are still largely confined to big cities.
As well as providing data, cancer registry publications also serve as a tool for advocacy. In 2021, the government budget for cancer was increased as a result of strong civil society advocacy, mostly driven by cancer patient organizations. Kyrgyzstan’s cancer registry is part of a strong network of such registries in the European Region that collaborate and support each other.
Leadership and political will
In addition to collecting and analysing data, Dr Ten and the registry team are also heavily involved in the National Cancer Control Programme, developed with WHO support. “We, the registry staff, highlight priority action areas for improvements in cancer control based on the registry data,” says Dr Ten. “Since the opening of the registry, those priority action areas are evolving. We must continue to pay attention to cancer treatment, but we must also think about prevention and early detection.”
Dr Nino Berdzuli, Director of Country Health Programmes at WHO/Europe, praises Kyrgyzstan for its continued support for the cancer registry. “When there are good professionals who understand the need for cancer registries, the only other ingredient for success is political will. Kyrgyzstan has shown great leadership by facilitating this work.”
“The next major challenge for the National Cancer Control Programme will be to increase access to essential diagnostics and treatment for cancer patients, so that people can fully believe in life after cancer,” she continues.
Source: WHO