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Making the Most of Real-World Data: Addressing Cancer Disparities Starts with All of Us

At the DIA 2022 Global Annual Meeting in Chicago, COTA CEO Miruna Sasu gave a keynote speech to a packed audience.  We wanted to share her remarks with our colleagues across the life sciences and clinical care communities.

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Healthcare disparities aren’t just statistics. They are personal – and they’re personal to me. Let me tell you about my story and how access to clinical trials for a family that wouldn’t necessarily be prioritized for such care helped to change our lives completely.

My family and I moved to America from Romania after the fall of the Berlin Wall. We didn’t have a lot of money: we lived in a hotel that my mother cleaned at night while she was going to school. My grandparents uprooted their entire lives to come here and care for me and my brother – he truly became a father figure to me. When my grandfather was diagnosed with Stage 4 lung cancer, it was a devastating blow. We didn’t know what to do. 

Somehow, as luck would have it, he found the right doctor at the right hospital at the right time to get enrolled in an experimental clinical trial. The treatment saved his life, and he was able to spend another 30 years with him. During those years, we bought a home and integrated into our community.  I made friends, went to college, and went to grad school. None of that would have been possible if my grandfather had died from lung cancer. That’s the power of clinical trials.

There are millions of families just like mine who need that hope, that support, and those opportunities. I’m so fortunate to be fulfilling my life’s mission of opening those opportunities for others while leading COTA.

There are big problems to solve. We know that in the US, clinical trial participants are whiter, wealthier, and healthier than the patients in the real world. That matters because Black men have twice the risk of being diagnosed with advanced prostate cancer than white men. It matters because only a quarter of participants in trials about heart attacks are women, despite the fact that heart disease is the leading cause of death for women.  

When we think about cancer care disparities in the LGBTQ+ community – this one’s a doozy.  We don’t even know what the disparities really are, because we don’t have enough information to run the numbers.

It all matters because these people are not being included in research that could save their lives.

So let’s talk about solutions. There are many, many barriers to overcome, from the speed of innovation to the funding to issues of patient privacy and trial recruitment.  

But imagine if we had enough accurate, real-time, real-world data. And on top of it, we build technology to identify unwanted variations in care. And then we share those insights with providers, researchers, life science companies, and health plans so they can take action to address those disparities in their communities.

Real-world data is going to be the key to unlocking visibility into the entire ecosystem. And it will allow us to overcome many of the barriers we have been facing for so long.

For example, we’re supporting randomized clinical trials (RCTs) with real-world data through external control arms (ECAs).  This allows us to reduce the number of patients put into a control arm, which is a good thing because you can put more real, actively ill patients into the intervention arm – just like my grandfather.

Some companies are even using RWD to decentralize trials and minimize participation burdens on patients who may not have a reliable car or may not live close enough to the trial site to get to their appointments easily.  

These are extremely promising strategies, but now we need to put them into practice. And that starts with us.  It starts with you and me and all of us, no matter what role we’re in or what company we work for. We need vendors, technologists, scientists, physicians, patient representatives, and everyone else to come together to solve these problems collaboratively.

Let’s create good data. Let’s use that data responsibly to uncover disparities and remove burdens for patients.  Ultimately, we will all benefit from this, because we will all be patients someday.  

So I’m asking you, at this pivotal moment, to help us fight. Come along with us to bring the right care to every patient, regardless of their gender, race, sexual orientation, economic status, and any other category that might be linked to a disparity.

Let’s make it happen together to help families like mine, and like yours, to have the best possible chance at living longer, happier, and healthier lives.