GICR Partners Task Force for Cancer Registration in Vietnam
, by Paul Pearlman
To cancer research stakeholders it is abundantly clear that good cancer data is essential for research and policy planning purposes. To this end, NCI has dedicated substantial intellectual energy over the years to cancer registry strengthening. Likewise, cancer registration is a priority area within Vietnam’s National Cancer Control Plan.
There are 9 cancer registries in Vietnam, with varying capabilities and catchment areas. There are three registries in each region of the country (north, center, south).
Hai Phong (2001)
Thai Nguyen (2001)
Da Nang (2009)
Thanh Hoa (2009)
Ho Chi Minh (1994)
Can Tho (2001)
Kien Giang (2009)
These registries cover about 30% of Vietnam’s population of ~90 million. AT the moment, they only capture incidence data. The registries are usually located physically in hospitals, but some are at provincial departments of health. The registries vary as to whether they are population-based, hospital-based, or pilots and the Vietnamese Ministry of Health is focused on strengthening all nine of these registries rather than establishing any new ones. The strongest are the Hanoi and Ho Chi Minh (HCMC) registries, who each collect incidence data from all of the hospitals in their catchment areas (44 for Hanoi and 30 for HCMC), have dedicated personnel, perform both active and passive data collection, and provide training and mentoring to the other registries in their regions. The National Registry is housed within the Hanoi Registry at the Tran Trieu campus of the National Cancer Hospital. The National Registry conducts annual training for the staff of the other registries, centrally consolidates the data from other registries, and is planning for bi-annual publications starting in the next couple of years. For all, authority to collect data is derived from the Ministry of Health (MOH).
Effectiveness of the registries is hampered by a lack of mortality data and a lack of specificity concerning cause of death of available records, missing information in medical records that cannot be retrieved later, lack of links between departments of hospitals, and poor staff retention. Key priorities for Vietnam include addressing the above as well as generating publications from registry data and improving data quality.
To address such issues the Global Initiative for Cancer Registry Development (GICR) was created as a concerted, multi-partner action plan. Working in collaboration, the GICR enables different organizations to contribute to a set of mutually agreed goals in direct response to the needs for cancer registration in low- and middle-income countries. The overall aim of the GICR is to provide measurable improvements in the coverage, quality and national networking capacity of population-based cancer registries.
To date, independent assessments, visits to registries, and training of Vietnamese registrars have been performed by CDC/NCCDPHP/DCPC, WHO/IARC, and NIH/NCI/CGH. Additionally, Vietnam has participated in training programs at WHO/IARC and a jointly coordinated regional program coordinated by NCI and IARC. Consequently, another independent assessment is not appropriate unless there is a substantial change in granularity. To this end, in order to better understand how best international partners can best support cancer surveillance in Vietnam, NCI, UICC and IARC performed a joint site visit as GICR Partners in late 2016 whose goals were three pronged.
The task force included the following members:
- Paul Pearlman PhD, Science Policy Advisor, US National Cancer Institute, Center for Global Health
- Les Mery MSc, Global Manager, Global Initiative for Cancer Registry Development, WHO International Agency for Research on Cancer
- Julie Torode PhD, Deputy CEO, Union for International Cancer Control
Members of the task force worked directly with registry leadership and staff in the north, center, and south to learn and identify specific areas for improvement in registry operations, case finding and quality assurance procedures, data analysis results, and data interpretation. During this process, mentoring of registry leadership and staff was provided through small working groups for Task Force members to better understand the strengths and limitations of the data from each regional registry. In the following months, task force members and Vietnamese registry leadership will jointly agree on follow-up strategies and next steps to achieve registry improvement objectives over a 12-month period. This will form the basis of a draft implementation plan with evaluation indicators to be presented to the MOH for its approval, support, and implementation.
Members of the task force worked with registry and hospital leadership on improving access to pathology and other reports on cancer cases, and on gaining access to vital registration data for case finding and for case follow-up. The task force gained a good understanding of the health care delivery and information systems available in the regions and health facilities to improve on cancer diagnosis, follow-up, and treatment in Vietnam.
The task force assessed the existing regional and national networks of cancer registries, and helped to establish or strengthen such networks in order to improve the cancer surveillance system in Vietnam. Within 18 months of the registry assessment visits to each of the three regional registries, a national workshop on cancer registration will be held to engage Vietnamese leaders and members of the network.
The task force found strong support (both clinical and policy) at all levels for the role of cancer registration, good understanding of population based cancer registration as a core component of cancer control, and a robust foundation of cancer registration activity at all three sites. There was also positive integration of surveillance activities into hospital services. Challenges include issues with data quality, the lack of mortality data, and gaps in skills and capacities to take full advantage of the data they have. For future work, the task force will work with the Vietnamese Ministry of Health and its institutions to help train key individuals and develop skillsets, analyze data, publish findings and develop national data quality indicators.