The First Drop of Water in a Probable Waterfall:
Global expansion of cancer surveillance is an urgent concern that should be prominent on the global health and development agendas, and should be added to the Millennium Development Goals (MDG’s). I’m sanguine that the unprecedented momentum given to chronic diseases since the United Nations 2011 High Meeting on Prevention and Control of Non-communicable Diseases and the adoption of the groundbreaking U.N. Political Declaration on the Prevention and Control of NCD’s- can be harnessed with even greater mobilization to address the globally ubiquitous cancer epidemic. United Nations Secretary General, Ban Ki-moon, has described non-communicable diseases-cancer, cardiovascular diseases, chronic lung diseases and diabetes-as representing “a public health emergency in slow motion” and confirmed that these issues should be “high on the development agenda.” Through leveraging the attention given to NCD’s and applying it to tectonic-scaled action, the global community will celebrate the commitments made thus far to reducing premature NCD deaths by 25 percent by 2025.
The battle on cancer is certainly an enduring one. In the landscape of developing healthcare systems, the consciousness of the cancer burden has been raised (According to 2012 GLOBOCAN report from the International Agency for Research on Cancer (IARC), 77 percent of the growth in cancer deaths is anticipated to occur in developing countries), yet there is still much discovery to endeavor and ensuing action to occur.
Science and discovery are the catalysts for efficacious public health policies and nationally-scaled programs, capable of yielding healthy outcomes. Cancer data- a void in most developing economies- can provide the seed knowledge and holistic insights into the epidemic’s profile: its trends, capabilities, risk factors and hopefully, its vulnerabilities to being controlled and ceased.
An innovative, multi-sector initiative is taking the first tangible step in addressing this issue, giving cause for optimism and making further action plausible. The Union for International Cancer Control (UICC) and The International Business Machines Corporation (IBM) have partnered in taking the first step toward galvanizing policy support for global cancer care: cancer data registries in developing nations. The registries, “the world’s largest clinical dataset on cancer patients,” according to IBM, will enable UICC to fulfill their mission to “accelerate the fight against cancer.”
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The initiative will begin in two to three countries in sub-Saharan Africa (working closely with the African Cancer Registry Network) and will expand incrementally over the next several years throughout Africa before rippling out to Southeast Asia and Latin America. The partnership grew from the principle that collaboration across all sectors of society- from civil to corporate- can and must play a role in the global cancer challenge.
UICC is a cancer organization which draws its strength from a membership base of over 800 organizations from more than 155 countries with the common purpose to “unite the cancer community to reduce the global cancer burden, to promote greater equity, and to integrate cancer control into the world health and development agenda”. UICC coordinates a number of successful high impact programs, from global education & training initiatives, global access to pain and relief, cervical cancer initiatives, and childhood cancer programs. As such, UICC and its membership are the experts, familiar with the landscape and the evolving needs. “UICC identified a need to improve the volume and quality of data collected on cancer across all countries so that we have an improved understanding of the problems we have today, the likely future we face and to assess the impact specific interventions may have in controlling the anticipated growing cancer burden”, explained Cary Adams, CEO of UICC. “We reached out to IBM which we felt represented one of the very best organizations to help address the global cancer data imperative. They had the vision to see that IBM expertise could bring a new perspective and play a critical role in helping improve cancer data collection globally-not just to understand the problem we face, but also to build a new resource, which would help prevent, detect and treat cancer more equitably across all countries- a virtual global oncologist!” he said.
The donation from IBM comes in the form of Big Data and analytics, a technology backbone with a two-fold probable outcome: the technology foundation on which to build out and strengthen the cancer care continuum in developing countries, and the data-enabling advocacy for global cancer care policies. Dr. Kyu Rhee is IBM’s Chief Health Officer in IBM Healthcare and Life Sciences, a division with a strong history of partnering with hospitals, providers, and other life science companies in using data to create more connected healthcare systems. In partnering with UICC to build and implement a virtually unprecedented cancer registry system in this context, Dr. Rhee states that “Ultimately, we can increase detection of cancer and subsequently decrease the time between detection and treatment”. Furthermore, Dr. Rhee expressed the promise that this program brings for subsequent cancer care policies, resulting from the data that the IBM/UICC registries accumulate. The introduction of ground-breaking technologies, such as IBM Computer Watson, into the global cancer fight can actually make the difference in saving lives.
“IBM has always contributed its best assets and thinking to the world’s biggest challenges, and there are few more serious than cancer”, said Dan Pelino, General Manager of IBM Global Public Sector. “By helping UICC build cancer registries, we can shorten the time between discovery and treatment to saving lives.”
And it truly is that bridge — that which connects discovery to sustaining human life- that this collaboration makes possible. “With IBM’s expertise in Big Data and analytics, I can imagine a world in which the very latest scientifically proven means of detecting and treating cancer is available in all countries, benefitting patients wherever they are in the world,” says Cary Adams, CEO of UICC. “This information will provide unique and compelling insights on cancer, the likes of which we have not seen before.”
Raising The Stakes: Why Not Be Opportunistic?
Collection of national data, such as in the case of cancer data, breaks the ground and lays the seed for policy translations to a national cancer care plan. It is the interpretation and leveraging of the data to drive public health policy and set priorities in cancer control that can make a reduction in the cancer burden. Policy aspirations from this initiative include cancer planning and surveillance, early detection screenings, access to essential medicines and technologies, and palliative care policies.
“Early detection is just one tool for addressing the cancer burden. UICC recommends a comprehensive national cancer control plan, spanning health promotion and prevention through the reduction in exposure to known risk factors, but also equitable access and availability of early detection, diagnosis, treatment and palliative care services,” Mr. Adams shared.
Cancer’s inclusion into the MDG’s (along with other NCD’s), while a challenging process, appears to be another attainable objective. A stronger argument supported through the data enabled by IBM’s donation could make this objective a reality. “A long-term outcome of the IBM-UICC program is to potentially harness a data-led resource to support cancer diagnosis and treatment decisions,” said Mr. Adams.
Knowledge is Power
What is a cancer data registry and why is it so important? “Cancer registries provide governments with incidence and mortality data so that effective policies for cancer control can be developed, implemented, and evaluated”, as described by IBM Healthcare and Life Sciences. The underpinning to effective policy is accurate data.
Let’s look for a moment at the National Program of Cancer Registries in the United States and what it has enabled. Enacted by the Cancer Registries Amendment Act in 1992 and administered by the CDC, the national cancer registry system collects data about cancer in each county of each state and is collected through mandated hospital reporting. It allows cancer registrars to capture a holistic image of the cancer portfolio and the spread of the disease burden. It is essentially the cancer grid. If you were to log onto the National Registry’s website, you would find a breakdown of cancer statistics, a range of comparative data, and links to each state’s cancer surveillance system. Cancer registries are the reasons that we can bring awareness to our policy makers, educate health professionals, provide accurate information to patients and their families, understand our genetic and ethnic predispositions to certain cancers, monitor occurrence, and develop screening programs. Such portfolios have given way to protocols and initiatives like the National Breast and Cervical Cancer Early Detection Program, for example. This is true for most developed nations, where cancer registries cover the vast majority of the population. Simply put, cancer registries enable survivorship. Imagine if none of this data existed. Imagine if we were not connected to the cancer grid: Our cancer mortality rate would be significantly higher.
Bridge the Divide
This is not the case in Africa, for example, where only 1% of the population is covered under a cancer surveillance registry. Hence, the disparity comes not only in the form of incidence, but even more so in the form of preventable mortality.
According to the UICC, “Of the 57 million global deaths in 2008, 36 million, or 63% were due to Non-Communicable Diseases (including cancer), and nearly 80% of NCD deaths occurred in low-and middle-income countries”. Cancer is becoming the new HIV across emerging economies. With statistics only projected to increase, the survivorship gap (and disparity) will only widen if we do not transfer the know-how in cancer detection.
Needless to say, there are many subsequent steps critical in providing cancer care: Policies for accessible screening, psychosocial support, addressing stigmatization, addressing cost of medicine, etc. However, the first aspect is certain: cancer data is the initial enabling link in the cancer care supply chain.
“Improved cancer registry data will reveal the population based trends that are so important in shaping and adapting a cancer strategy”, Dr. Isaac Adewohl , a gynecologist in Nigeria and president of the African Organisation for the Research & Training in Cancer, told IBM. By bridging the data divide, we can expand the cancer care grid and level the fields to accessing cancer treatment.
Creating an Alternative Ending:
Mary Namata is from Buddo, a small village near Kampala Uganda. She is a mother, grandmother, successful farmer, and 4th stage breast cancer patient. Her story was recently narrated in the New York Times as part of “The Cancer Divide Series.” Ms. Namata had discovered a lump in her right breast, but had not received timely treatment. This was mostly due to the combination of misinformation and a cumbersome health system burdened a doctor-to-patient ratio that leaves providers harried, and patients untreated.
Like other cancer diagnoses in Africa, breast cancer (the second most deadly cancer worldwide according to the 2012 GLOBOCAN report) is often not detected until stage 4, at which it has already invaded the organs and/or bones and cannot be stopped.
Ms. Namata has begun treatment at Mulago Hospital in Kampala through a joint team of local oncologists and visiting doctors from Seattle’s University of Washington and the Fred Hutchinson Research Center. However, the cancer is very advanced and the treatment resources are limited, compounding for a resulting palliative approach to her care while she still hopes for surgery.
“The terrible part about breast cancer is that if we just did what we already know how to do in other places, we could make major shifts in survival,” Dr. Benjamin Anderson, head of the Breast Health Global Initiative at the Fred Hutchinson Cancer Research Institute, told the New York Times. As Cary Adams described, “A key driver for improving cancer survival is down-staging of the disease.”
It’s a Small World:
The developing world is not a world apart. Cancer, unfortunately, is insidious and wide-spread. The IARC reports that in 2012, “more than 14 million people were diagnosed with cancer worldwide”. Culminating factors- eradication of infectious diseases, a globally aging population, and increasing exposure to Western lifestyles- have created the perfect storm for the disease to metastasize. Therefore, there should be unification in understanding cancer’s manifestation on a global scale; an understanding that can only stem from reliable data. The UICC-IBM partnership coined the phrase, “You cannot solve a problem unless you understand it.” Furthermore, policy makers and global health advocates should leverage this data to ensure that nobody dies a preventable death from cancer. As World Cancer Day approaches (February 4), let us remember that all cancer patients should be entitled the chance to achieve survivorship, no matter where on the cancer grid they may reside.
