Why We Need More Data Sharing in Cancer Care


By Ken Tarkoff


The Washington Post published a story this weekend that sums up why I am so excited about the future of precision medicine. The article is the story of Stefanie, a 23-year-old with colon cancer, who wasn’t responding to chemotherapy and seemingly had nowhere left to turn. Luckily, she had a sister that refused to accept that there wasn’t something better available and, on her own, she discovered a clinical trial underway at Johns Hopkins University. This story is one of millions out there that exemplifies why we need to substantially improve access to information for providers and patients dealing with cancer.

The trial Stefanie participated in was for Keytruda, an immunotherapy targeted to her genomic makeup, part of a growing class of therapies that are becoming the new mode for leading edge treatment in late-stage cancer care. The treatment worked: Stefanie is now “free from all signs of the disease.”

Last week, the industry experienced a huge milestone. Keytruda was approved by the FDA based on the tumor’s molecular profile and not its anatomic location. The move is indicative of a revolutionary shift that’s occurring in how medicine is practiced. We now live in a world where physicians have the ability to more precisely understand diseases and deliver more effective treatments that help patients live longer.

But for most patients, these treatments are still out of reach. Stefanie herself saw the problem. “Oncologists can barely keep up. My sister found a trial I was a perfect candidate for, and my doctors didn’t even know it existed,” she said in the article.

This story has been repeated a million times over in communities across the country. Except – often, the results are more tragic, because those patients never had the option for a treatment that is right for them. Their oncologists simply didn’t know the treatment existed.

We need to fix this problem. We need a world where oncologists can make treatment decisions based on the combination of molecular and clinical data, have access to local experts in a streamlined and efficient way and, most importantly, have access to real-world evidence at the point of care, informing them on what similar patients are experiencing in both treatments and outcomes.

Thankfully, the healthcare community is coming together to solve this massive problem. Along with advances in technology and medicine, we are in the midst of a rapid culture shift toward a willingness to share data. It has been spurred by former Vice President Joe Biden, who, when he first launched his Cancer Moonshot initiative, challenged the health care community to develop better ways to share data, recognizing that we can’t make major improvements if we don’t leverage the power of aggregated, real-world data.

This is the most significant opportunity to truly improve outcomes at scale–to bring the treatments that some cancer patients are benefiting from to all cancer patients.

At Syapse, we set out to make this a reality. Today, after a year of incredible progress, we are launching the Syapse Network. It’s a single national network in which our provider partners can share patients’ clinical, molecular, treatment, and outcomes data, and, in real-time, learn from this aggregated, real-world evidence generated by their peers.

Physicians can now view which treatments offer the best outcomes for clinically and molecularly similar patients at the point of care. These insights are surfaced directly within the physician’s workflow, making it easy for them to incorporate this information into their daily routine. As more physicians begin to leverage this network later this year, we will see the power of the data sharing grow exponentially, opening more opportunities to bring targeted and personalized care to more cancer patients.

Stefanie’s story shows that precision medicine works. But perhaps even more importantly, it shows how important it is to offer more access to this approach to other patients. Today, we have the technology to do it, and now it is on all of us to find a way to make this level of care a reality. I know there are obstacles and barriers, but, if we work together, we can find a way through.

Do you have a story you’d like to share of a friend or family member who faced a similar challenge? I would love to hear them in the comments.