Empowering patients through cancer maps

Marty Tenenbaum jmt@commerce.net

Abstract

A cancer diagnosis changes life in an instant. A patient and their family must make urgent life or death decisions with no maps or reviews to guide them. The Web is full of disorganized, out of date and contradictory information. Even physicians are often faced with conflicting expert opinions and a shortage of actionable data buried within a tsunami of research.

In a perfect world there would be Big Data analytics to guide decisions. Such a resource does not exist. In an even more perfect world, there would also be a crowd-sourced database including the opinions of hundreds of doctors and the reaction to treatment of thousands of patients.  Such a database does not yet exist. In the real world, all you can do is ask an experienced physician and hope for the best.

Cancer Commons is developing a rapid learning platform called Cancer Maps to help patients explore options, ask the right questions, and make informed decisions -- collaboratively -- with their family and care team. We are combining expert curation, algorithms, and crowd-sourcing to capture and organize the world’s knowledge of cancer. Cancer Maps personalizes this knowledge for each individual, providing a roadmap to the best available treatments and institutions for their specific type of cancer, taking into account their treatment history and personal preferences. The knowledge base is updated continuously as patients and doctors record their observations and experiences, and as new treatments are developed.

Each patient’s Cancer Map begins with the relevant published treatment guidelines, and overlays actual data on what treatments similar patients have tried, and how well they worked. Patients can also drill down to see curated information about the pros and cons of alternative treatments, and read first-hand experiences with new drugs, trials, and research, contributed by the community. Patients who have exhausted the standard options can be referred to appropriate clinical trials and research institutions in the Cancer Commons Network that have demonstrated success with their specific type of cancer.  The network includes experts in precision oncology, supported by molecular tumor boards and diagnostic services, all committed to collaboration and data sharing. Patients can also crowdsource treatment ideas. Patients learn about and access these resources through Cancer Maps, then share their experiences and data, resulting in frequent map updates. This rapid feedback loop will enable promising experiences to be quickly replicated, and negative ones quickly quashed.

An ongoing challenge is getting access to patient data. Cancer professionals and institutions are reluctant to share data for manifold reasons. Only patients have the motivation and the urgency to see their data widely shared. Cancer Commons is partnering with advocacy groups to acquire data directly from patients that no one has previously aggregated: de-identified medical records that patients authorize physicians to release to us, patient self-reported data on outcomes and quality of life, and case reports from physicians and molecular tumor boards.

Cancer Maps organize and personalize this data in an intuitive way to help patients and their care givers achieve the best possible outcomes. 

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