Back in January of this year, a young man came into the National Brain Tumor Society offices to talk with all of our staff. He was vibrant, well-spoken and captivated our attention, discussing the critical issue of data sharing in the world of research and medicine. Besides a fading scar from brain surgery, there was nothing discernible to indicate this young man had just been diagnosed with malignant brain tumor this past summer. Well, nothing else, except the various 3-D printings of that same tumor he had brought with him.
This young man was Steven Keating, a 26-year-old doctoral student at the Massachusetts Institute of Technology’s Media Lab. Steven has an incredibly inspiring story, which was just featured in the New York Times. This article is highly suggested reading, and explores the critical issues regarding the use of data in cancer treatment; issues Steven is advocating for, as they have been of great benefit to him is his fight against an astrocytoma.
“[Steven] has pushed and prodded to get his medical information, collecting an estimated 70 gigabytes of his own patient data by now. His case points to what medical experts say could be gained if patients had full and easier access to their medical information. Better-informed patients, they say, are more likely to take better care of themselves, comply with prescription drug regimens and even detect early-warning signals of illness, as Mr. Keating did.” – New York Times, 3/31/15
The other side of so-called “Big Data” in oncology – beyond the use in patient care that the New York Times article focuses on – is its utility in cancer research.
Big Data (sometimes referred to in medical research as “bioinformatics”) is, in many ways, the foundation for “Precision Medicine” – a topic we’ve discussed before, which demands sophisticated platforms to share, capture, and mine data on tumor genomics. This is particularly true for rare diseases such as brain tumors, where pieces of important information needed to conduct research are scattered across the different research institutions around the globe.
Take this recent article from the biomedical research-focused news outlet GenomeWeb on the “Precision Medicine Initiative,” announced by President Obama in his 2015 State of the Union, which addresses how this massive undertaking will utilize patient data and open data to achieve it’s goals:
The $215 million initiative seeks to leverage genomics, informatics, and health information technology to accelerate biomedical discoveries and enable personalized medicine approaches for the diagnosis and treatment of diseases. Of the $215 million in funding that Obama seeks in his FY 2016 budget, $130 million would go toward creating a national research cohort of about 1 million people, whose biological data, as well as environmental, lifestyle, and behavioral information, will be shared with qualified researchers.
“Establishing a 1 million person cohort is an audacious endeavor,” NIH Director Francis Collins, said in a statement. “But the results from studying such a large group of Americans will build the scientific evidence necessary for moving precision medicine from concept to reality…”
National Brain Tumor Society has developed two of its own programs as prototypes for Precision Medicine: Defeat GBM Research Collaborative and Project Impact: Driving Discovery to a Cure for Pediatric Brain Tumors. Both multi-institutional programs are built to accelerate the translation of discoveries made in research laboratories into the clinic care for patients. This means matching the right drug to the right patient at the right time, and requires extensive data sharing and bioinformatic capabilities. These initiatives also led to our current drive to develop what we are calling the “CURE Platform,” a portal where researchers working on brain tumors from around the globe can share information and data to accelerate the pace of discovery and translation.
We believe that developing effective brain tumor treatments requires systems change at many levels throughout the drug development pipeline. This includes the integration of big data into clinical practice to support precision medicine. Successful adoption will require buy-in from a number of stakeholders (patients, industry, academics, clinicians) with a history of working in silos.
Mark Kaganovich, the CEO and Co-founder of SolveBio, recently shared this opinion when he told leading technology industry new site TechCrunch that genomics hold promise for understanding and treating cancer, personalized medicine, and more, but is stuck in the equivalent of the early days of the internet when AOL CDs were sent in the mail. Kaganovich expressed how more needs to be done to build the capability to broadly store and share this important data.
“Applications that facilitate the collection and dissemination of this kind of encyclopedia of genomic information that can be referenced by other applications will drive the industry to new heights” – Mark Kaganovich, CEO and Co-founder, SolveBio
Agnostic patient driven organizations, such as NBTS, and data curious patients, such as Steven, may be the only ones who can galvanize the community to drive this field forward. Indeed, we have a responsibility to our patients and community to provide leadership and take the calculated risks needed to facilitate big-steps forward in brain tumor research and treatment.