Is the secret to combating a “silent killer” hiding in our health data? That’s what we have been teaming with Komodo Health to find out. 

Intrahepatic Cholangiocarcinoma, or ICCA, is the second most common primary liver cancer in the world. Because its early symptoms often go unnoticed or can be attributed to other ailments, diagnosis typically occurs at advanced stages, when treatment is only minimally effective, earning it the ominous “silent killer” moniker. The odds for any liver or biliary cancer are overwhelming, and they loom larger in the face of a more rare, less identifiable form of the disease like CCA. Each year, an estimated 8,000 people in the United States are diagnosed with CCA, with a 5-year survival rate of less than 20%. 

Complicating matters is the fact that the disease burden of CCA is not being felt evenly throughout the country and the efforts in place to address that burden are not always aligned with the areas that need it most. Every day, CCA patients face disparities in how their cancer is treated based on where they live, which specialists they visit, and what clinical trials they happen to find. This is not acceptable. 

As advocates for CCA patients, the Cholangiocarcinoma Foundation is committed to sharing information that can help patients diagnose this cancer sooner and give them a better chance at survival. In many cases, that means making sure they are seen by the right oncology specialists as quickly as possible, no matter where they live.

Our partnership with Komodo Health, which began in May of 2018, allows us to do just that. By leveraging an intelligence platform that combines de-identified data from over 500 sources capturing more than 320 million Americans, we are able to connect patients with the care they need, and also help providers keep pace with the latest standards of care. 

We use this data-driven intelligence to help patients find the specialists and care networks that have the most expertise treating CCA. That is important because CCA is complicated and treatment requires close coordination between highly specialized teams of surgeons, oncologists and radiologists. Komodo technology allows the Cholangiocarcinoma Foundation access to analyzed diagnosis codes and patterns of referrals to accurately pinpoint multidisciplinary specialists who work together to treat the greatest number of CCA cases. These provider groups can then be added to a nationwide database and specialist finder that patients can easily search to find experienced cholangiocarcinoma  providers in their areas.

We are also using this same technology to proactively spot gaps in care, where physicians aren’t meeting benchmark standards of care for biomarker testing for cholangiocarcinoma tumors. Because of the subtle way CCA presents itself, biomarker testing is vital to inform therapeutic decisions and can lead to additional treatment options such as new targeted therapies. By seeing which physicians are falling short of this standard of care, we can intervene with targeted education and awareness campaigns, while collecting biomarker data that can help identify potential treatment options that may not be immediately clear.

Our work with Komodo also helps us support the International Cholangiocarcinoma Research Network (ICRN), which consists of researchers and research groups from renowned institutions which includes a wide spectrum of disciplines, perspectives, and research methods. The ICRN brings together various stakeholders to improve knowledge about CCA etiology, prevention, early detection, treatment, and prognosis. The provider insights we’ve been able to extract from Komodo Health have played a key role in identifying likely candidates to join ICRN and expedite the research process.

An aggressive disease demands an aggressive approach. Our goal is to ensure that patients are offered the tests and specialist referrals that could make the difference between life and death. Armed with the right data and an array of partners united around our mission, the Cholangiocarcinoma Foundation is bringing much needed awareness, attention and resources to the fight to help cancer patients live longer, healthier lives. Komodo is helping improve that effort every day. We’re proud to be in the fight to link data and raise awareness that will uncover new pathways for better therapies, better treatment decisions, and improved outcomes.