Nearly 4 million women worldwide are diagnosed with breast or gynecological cancers each year. Yet too many factors around these diseases are still poorly understood, including why there are so many disparities and variances in treatment and outcomes.
Clinical trials have been helpful in illuminating some of these issues. And early approaches to leveraging real-world data (RWD), such as claims and pharmacy data, have enabled researchers to start piecing together more comprehensive insights into the female cancer experience, albeit in a limited way.
That’s because these basic data sources are, at their core, transactional records of what happened – not why it happened (or didn’t happen) or how it turned out. To tell real, accurate, and comprehensive stories of cancer care, we need varied types of more detailed and more narrative information, including EHR data: the type of RWD that is being collected by oncologists during everyday practice.
At COTA, our goal is to develop a structured patient journey that follows every patient’s oncology experience from diagnosis until the conclusion of the treatment journey. This data can be used for multiple purposes, from understanding trends in disease prevalence to getting a better look at disparities in care, such as treatment delays, unwanted variation in therapy, or the influence of socioeconomic factors on outcomes.
With a more robust take on high-quality, high-value RWD, we can start to understand hidden patterns in cancers, especially around the disparities that affect groups who are typically underrepresented in formal scientific research.
For example, there are still major gaps between the numbers of male and female clinical trial participants in oncology. And even in trials focused on women’s cancers, including breast and ovarian cancer, people of color comprise less than 20% of the typical research cohort, despite Black women being among the most likely groups to be diagnosed later in their disease, experience challenges with treatment, and die from their cancer.
“Clinical trials simply do not capture the full scope and scale of what cancer looks like in real-world practice,” explained C.K. Wang, an oncologist and COTA’s Chief Medical Officer. “We know that clinical trials only enroll select groups of patients, who tend to be White and younger and healthier than the general cancer population. And we know that trials can only focus on very tightly controlled, narrowly defined clinical scenarios, by their very nature.”
“We need new strategies to integrate more substantial data from the real world to fill in the gaps that clinical trials leave behind. RWD enables us to do that, especially in critical areas of study around women’s cancers that have historically seen less attention than other conditions.”
With the story of women’s health constantly changing, it is crucial to understand how the ebb and flow of external factors can affect women’s abilities to access, afford, and advocate for their own care. We need to be able to understand and address systemic and clinical issues such as a massive gulf between the number of specialists focused on male cancers versus female cancers, the deadly latency in screenings and diagnoses for people of color, and the highly variable treatment decisions that lead to widely divergent survival rates among different groups.
To further our mission of bringing clarity to cancer, COTA is investing in expanding and enhancing our capabilities with ovarian, uterine and breast cancer datasets, which can help researchers, drug developers, policymakers, and clinicians make more informed decisions about women’s health.
This is an important moment to shine an even brighter light on women’s cancers, particularly as changing policy priorities begin to have an impact on how people navigate the healthcare system.
By furthering our investment in women’s cancer datasets, COTA is eager to collaborate with industry partners on accelerating research into these conditions with the goal of improving experiences and outcomes for the hundreds of thousands of women affected by cancer every year.
