“You don’t all play well in the sandbox,” former vice president Joe Biden admonished the cancer care community at the Brainstorm Health conference last month. He was referring to health care providers’ widespread unwillingness, and to some degree inability, to share data.
Fortunately, that’s changing. A seismic shift is now underway as more and more health care providers are sharing de-identified data and discovering in them incredible new ways to treat cancer. Now the challenge is for more providers to rapidly embrace data sharing. Doing so will fundamentally transform cancer care.
This culture shift has coincided with another rapid transformation — how cancer medicine is practiced. Today, leading health systems across the country are embracing precision medicine, arguably the hottest topic at this year’s just-concluding American Society for Clinical Oncology meeting in Chicago. In this new approach to fighting cancer, a treatment is tailored to a patient’s — and his or her tumor’s — specific clinical and biological profiles. That requires data: a patient’s clinical, molecular, and genomic profile, and his or her treatments and outcomes.
As medical oncologists, we’ve seen immense amounts of such data gathered. We’ve also seen how ineffective we and our colleagues have been at putting them to good use. In the past few years, we’ve all entered important patient data into electronic medical records. But rather than improve clinical care, these data sit, siloed, within hospital information technology systems, inaccessible to nearly everyone.
To make the problem worse, nearly every institution stores data differently, using its own nomenclature, formats, and standards. So when the time comes to make critical medical decisions, like which treatment is right for a specific cancer patient, physicians are largely left to rely on their own clinical experience, insights from a colleague, or the latest (and perpetually out of date) clinical guidelines. Of course, we spent years training to make such tough decisions, but it galled us more and more to know that an unused treasure trove of data sits in computers across the country that could help us arrive at vastly more informed conclusions.
With larger data sets, we can improve care for our patients. This is especially true with precision medicine. Large data sets help physicians understand how targeted treatments have worked for genetically similar patients in the past, and help us uncover treatments we may not have thought of. Of course, assembling large data sets requires health systems to share information.
Technology companies are now making it possible for providers to do this. Our health systems, Providence St. Joseph Health and the University of Miami Health system, use a platform called Syapse. It enables sharing of precision oncology data on a national scale, linking us with our peers while keeping patient data secure. Several other technology companies are entering this space.
The quantity and quality of shared data are transforming the care that cancer patients receive. Imagine sitting in your doctor’s office trying to decide which treatment would be best for your stage IV colorectal cancer which has a rare DNA mutation. Instead of your doctor relying solely on her own experience with this type of cancer, she can tap into the experiences of thousands of her colleagues across the country, along with other evidence-based information. She can use the network to discover treatments and outcomes data for all patients who were treated with the same rare mutation and clinical profile.
Not only that, but she can instantly turn that information into action. Physicians are constantly overworked, but today’s technology integrates that data into the core clinical systems physicians use every day, in an easy-to-use, standardized format. This makes it easier for physicians to identify the most effective treatment, right at the point of care.
We are also encouraged by a number of health care organizations and technology innovators that are answering the call to accelerate research. The Multiple Myeloma Research Foundation is contributing data to the National Cancer Institute’s Genomic Data Commons to accelerate cancer research. Intel’s Collaborative Cancer Cloud is collecting data from the Knight Cancer Institute at Oregon Health & Science University, Dana-Farber Cancer Institute, and others to help developers and researchers discover genes that drive disease. Most significantly, the Precision Medicine Initiative, spearheaded by the Obama administration, aims to collect genomic data from 1 million patients nationwide.
The benefits of precision medicine are real, but so far we’ve experienced only a fraction of its potential. Millions of people are treated for cancer each year. The more data we can share about each one of them in a secure and standardized manner, the better, more targeted treatments we can deliver to them.
Getting there will require a commitment from all of us involved to start working together.
Thomas D. Brown, MD, is the executive director of the Swedish Cancer Institute at Providence St. Joseph Health in Seattle. Jonathan C. Trent, MD, is professor of medicine and director of sarcoma at the Sylvester Comprehensive Cancer Center at University of Miami Health System.
