Patient perspective: Making sense of biomarkers and the diagnostic journey

4 February 2019

Survey results released on World Cancer Day highlights need for shared language and more information of biomarkers, mutations and genetic tests. 

Today, 4 February is World Cancer Day and this day presents a significant opportunity to raise awareness and lift the public health literacy around cancer. The aim of the day is to empower this generation and the next with correct information, knowledge and education which are powerful enablers for a healthier population. 

In the weeks leading up to World Cancer Day, UICC and World Cancer Day Visionary partner, Diaceutics, a diagnostics data analytics and implementation services company, has been surveying cancer patients in an effort to raise awareness and better understand the diagnostic journey from a patient perspective.  

The research which is being shared today found that over 60% of cancer patients in the United States and the United Kingdom found the concept of biomarkers, mutations and genetic tests more difficult to understand than information about diagnosis and tests, treatments, risk factors and treatment side effects. Encouragingly, 70% of those surveyed indicated that they would like to learn more, which points to a further need for accessible, clear and simple information around biomarkers, mutations and genetic tests. 

“What’s interesting from our research is that just 48% of patients said they are familiar with the term ‘precision medicine’, despite the fact that 60% report being tested for biomarkers,” says Peter Keeling, founder and CEO of Diaceutics and the Precision Medicine Connective.

So, while patients know targeted therapies exist, they are unfamiliar with all of the terminology. In order to effectively empower patients, we need to ensure they are speaking the same language as their physicians and that is something that we will work with the whole cancer community to address. We expect our partnership with UICC can help shape the efforts to make better testing an equal partner to better treatment in the fight against cancer.

The importance of the physician-patient relationship was underscored with the finding that above all else, the most effective method of informing newly diagnosed cancer patients about the availability and importance of biomarker testing is through information provided by their healthcare professionals. The survey results also showed that of those who were tested, 89% received the test because it was requested by their physician. This also highlights a challenge for other groups, like patient advocacy organisations, to continue driving activities to empower patient voices so they can take ownership of their diagnostic and treatment journeys.  

Coupled with a lack of public awareness and understanding of the concept of biomarkers, mutations and genetic tests, are delays faced in receiving a biomarker test. Only 28% of cancer patients receive biomarker tests directly after diagnosis, with 39% of those surveyed receiving these tests ‘a few weeks’ later, and 14% of those surveyed receiving these tests months after diagnosis. This presents a concern with delays potentially affecting quality of treatment and care following diagnosis.

UICC’s World Cancer Day platform lifts public and raise awareness about not only what can be done, but in seeking the earliest possible detection of cancer, but in being informed about how best to navigate complex patient pathways in order to receive optimal care. 

UICC recognises the need for urgent action toward the earlier detection of cancer to improve, not only patient outcomes, but also quality of the cancer patient’s journey aims to support this quality of care for patients. Diaceutics and its non-profit arm, the Precision Medicine Connective, both seek to support patients in receiving the biomarker testing they need to identify more targeted, and potentially lifesaving, treatments. 

About World Cancer Day 2019

World Cancer Day takes place every year on 4 February and is the uniting global initiative under which the world comes together to raise the profile of cancer in a positive and inspiring way. Spearheaded by the Union for International Cancer Control (UICC), the day aims to save millions of preventable deaths each year by raising awareness and improving education about the disease alongside calling on governments and individuals across the world to take action. 

2019 will be the first year of the new three-year campaign, ‘I Am and I Will’. The new theme is an empowering call for personal commitment and represents the power of our actions taken now to reduce the growing impact of cancer. This year follows on follows on the back of last year’s tremendous campaign success, including nearly 1,000 activities taking place in 130 countries, over half a million tweets, and more than 50 governments participating in 2018.

#WorldCancerDay #IAmAndIWill

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Last update: 
Friday 7 June 2019