To reduce the global cancer burden, we need to improve local research and data infrastructure
World Cancer Day 2019 serves as a brutal reminder of the outsized burden carried by low-income countries.
This week, we recognized World Cancer Day, an annual February 4th event. This event resonates with most people: Who hasn’t been affected by cancer? Who hasn't experienced the numbing effect of hearing that you, a family member, a friend, or a co-worker has cancer? In my own circle of family and friends, I have seen the effects of breast, blood, brain, colon, esophogeal, metastatic, ovarian, pancreatic, prostate, and skin cancers. Some were caught early and some far too late. Some have had speedy recoveries and others pursued NIH clinical trials. Some experienced a complete recovery; others endured long-term treatment, entered remission, or sadly, they and their families experienced the devastating effects of death. In all cases, there was a struggle to understand why, a decision to fight, and a hope for the best.
Cancer remains the second leading cause of death resulting in 9.6 million deaths globally in 2018; the most common cancers in descending order are lung, breast, colorectal, prostate, skin, and stomach. Aside from the emotional burden that cancer causes among patients, survivors, and their families, the yearly economic burden is enormous. Though nearly 1 in 6 deaths worldwide is due to cancer, more than 70 percent of deaths occur in low- and middle-income countries (LMIC). Cancer burden in LMICs is affected by infections (more than 25 percent of cancer cases are related of cancer cases are related to infections like hepatitis and human papillomavirus), and other contributing factors such as access to care and late stage presentation. And, approximately 1/3 of cancer related deaths are due to behavior and dietary intake. This includes factors such as obesity, consumption of fruits and vegetables, and tobacco use.
U.S. Cancer Research and Data Infrastructure
While cancer remains the second leading cause of death in the U.S., there has been a 21 percent decline in the age-adjusted cancer mortality rate between 1975 and 2015. During this same period, the five-year relative survival rate for new cases of cancer has improved from 49 percent to 69 percent. Underpinning these statistics and improvement is a robust research infrastructure with numerous data systems to inform our understanding of cancer.
While the U.S. research and data collection system is loosely connected, it provides data to track and measure cancer control progress. For example, the Centers for Disease Control and Prevention has primary responsibility for conducting large-scale national or state-based epidemiological studies. These landmark studies include:
- Behavioral Risk Factor Surveillance System (BRFSS)
- National Health Interview Survey & Cancer Control Supplement (NHIS and NHIS CCS)
- National Health and Nutrition Examination Survey (NHANES)
- National Program of Cancer Registries (NPCR)
- National Vital Statistics System (NVSS).
At the National Institutes of Health, research spans the discovery of cancer genetic risk factors, healthcare delivery research, implementation science, and the expanding field of survivorship, among other areas. Examples of landmark efforts include the AllofUS, Health Information National Trends Survey (HINTS); SmokeFree.gov; and the Surveillance, Epidemiology, and End Results Program (SEER).
In addition, with the proliferation of electronic health records (EHRs), claims databases, and the mechanisms for electronic health data brokering, the U.S. has the opportunity to advance progress in cancer outcomes rapidly. For other nations without these resources and systems, identifying gaps and establishing policy can be challenging.
A Different Picture in Low- and Middle-Income Countries
In general, global health research has a conundrum: about 10 percent of global health research spending is devoted to diseases or conditions that account for 90 pervent of the global disease burden. In contrast to the U.S. (and other high income coutries) cancer research and data infrastructure, the picture in LMICs is complicated. LMICs constitute 84 percent of the global population, yet many of their citizens live on less than $20 per day, have limited access to surgical facilities, incur greater out-of-pocket expenses, and face lower availability of cancer drugs. For LMICs, infectious diseases like avian influenza, HIV, malaria, and tuberculosis — rather than chronic disease and the growing incidence of cancer — remain the primary focus. Moreover, 20 percent of these countries do not have the necessary data collection infrastructure to support policy development and initiatives.
This challenge is not the result of a lack of desire or interest - the international community invests considerable money in LMICs for health research and services. Nevertheless, it has not yet resulted in a locally sustainable cancer research and data infrastructure capacity. It is clear that we need a paradigm shift – subject to diverse local populations, their needs, and their decisions. In addition, one based on new and local approaches to communication, health care delivery, health disparities, patient reported outcomes, and technology utilization. Taken together, alternative approaches to data collection, systems, and health research may form a new constellation of data to help LMICs identify gaps along the cancer control continuum and develop new policy.
So, as we mark another World Cancer Day and the progress being made, let us ensure we support and nurture investment in LMICs to accelerate a sustainable cancer research and data collection infrastructure.
Do you agree or disagree? How do you think high-income nations can do more to support LMICs and reduce the global cancer burden? Please share your thoughts and feedback with us on Facebook or Twitter.
