Q: Reflecting the current reality of a brain cancer diagnosis, how can Cancer Commons positively impact the treatment and outcome of each patient diagnosed with brain cancer?
A: Just over two and a half years ago the March 30, 2015 issue of Time magazine arrived in my mailbox. The cover story “Closing the Cancer Gap” featured two women: “Both of these women have brain tumors…One of them is beating the odds”. In essence, the article compared two women diagnosed with glioblastoma and evaluated the impact of tumor genetic testing in their treatments and outcomes. The first was treated with standard of care chemotherapy. The second received the BRAF inhibitor vemurafenib in a basket trial after genetic testing identified a rare BRAF mutation in her cancer. Treatment with vemurafenib lead to unprecedented tumor regression with few side effects allowing her to beat the odds typical of glioblastoma – the most aggressive form of brain cancer.
I was gripped by this story because as a scientist (working at the time for CollabRx on the content and curation team mining treatment rationales for individual variants) it was apparent to me that treatment selection based on identification of predictive biomarkers has the potential to make a significant difference in outcomes for patients. But I saw the other side of the argument too. Comprehensive sequencing is expensive, identification of driving alterations is rare, and most often more questions are raised than answered. In my current position, scientist and product manager at Cancer Commons (CC), I’d like to say a bit more about how a non-profit organization such as CC can move the needle in a landscape as bleak as brain cancer.
We must start collecting patient journeys before we understand how dozens of genetic abnormalities (or more, and their infinite combinations) propel growth, drive tumor evolution, and contribute to therapy response or evasion. I am reminded of the old adage: “Lessons come from the journey, not the destination.” Where one patient’s story can only exist as an anecdote, many stories can be organized into larger buckets or cohorts elevating them to a higher level of evidence. For this purpose, Cancer Commons is building an interactive Patient Registry that can accommodate both prospective and retrospective patient data. We are capturing a specific and limited set of data necessary to understand each patient’s diagnosis and treatment and match them to relevant treatment insights and clinical trials. We follow the patients over time to capture outcomes data so that we can inform future patients what worked and what didn’t.
Importantly, as a companion to the Patient Registry, we are building a case analytics exploratory tool. The case exploration tool allows us to display aggregate data in the registry in the form of graphs and statistics. We can thus visualize the distribution of treatments, the frequency of treatments given, and the outcomes associated with each. We can ask questions such as: Which treatments have been the most efficacious with the highest quality of life? Are any investigational drugs in trials performing well within a patient cohort? Do exceptional responders share any genetic features? What is the next best treatment option for this unique patient right now? All of this is being piloted in brain cancer as a proof of concept. But the approach of knowledge collection, analysis, and sharing will be extended to every cancer type.
I would like to invite YOU to get involved with the Cancer Commons – we are taking all comers. If you are an advocacy group, foundation, or health care organization, join our platform – we can white label our tools and services to support your patients. Share your de-identified data if you have it – the more data we have in our repository, the more powerful our analytics tool becomes. Physicians, key opinion leaders and researchers, contribute your treatment rationales and insights to collaborate on difficult cases, and help us understand how we can improve our data collection methods and interpret our findings. And finally, if you are the patient, all of this was built for you. No matter your cancer type or stage, or location or financial situation, our expert network can help you tap into the world’s collective cancer knowledge. There is a better way forward. Please come help us forge it.
Lisandra West’s contact info is included in the author affiliations at the top of this page.
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