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The Summer Surge of Data-Sharing Initiatives

June 15, 2016

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June has proven to be an exciting month for those invested in the mission to better share healthcare data and information. Two such federal initiatives were announced this month: Vice President Joe Biden’s $70 million cancer database, the Genomic Data Commons and FDA Chief Dr. Robert Califf’s promotion of a scientific co-working space, precisionFDA, as well as a call to recruit 100 million Americans as opposed to 1 million for the Precision Medicine Initiative (PMI).

The Genomic Data Commons is central to VP Biden’s Cancer Moonshot Initiative, and will be a shared database from large-scale oncology research programs and real-time clinical trials. According to the brain trusts behind the project, these conjoined datasets will lead to “a much deeper understanding of which therapies are most effective for individual cancer patients.”

Dr. Califf’s comments were the subject of an excellent write-up by STAT News reporter Meghana Keshavan. In essence, he wants to greatly expand the number of patients being recruited to volunteer their health and genomic information for the PMI, while also encouraging life science companies to collaborate and share the genetic data they collect and analyze on a web-based co-working platform, precisionFDA. This cloud-based portal, launched in December, offers scientists from academia, private industry, and the government a shared space for collaboration. As genomic sets are notoriously difficult to decipher, working together will be key to accelerating efforts.

Both Biden’s and Califf’s initiatives rely on the idea that amassing tremendous amounts of data, that can be easily accessed by many, is critical to testing which interventions work on an array of patient populations. When these types of initiatives are successful, we will see a new age of treating disease – one in which we not only better understand disease mechanisms, but also how we can best treat individuals according to their specific medical profiles.

At the core of both leaders’ pursuits is the need for annotated human biospecimens – the bedrock of medical research. Every day at iSpecimen, we witness the effects that specific, customized specimen collections and associated data have on medical breakthroughs.

We are hopeful that both VP Biden’s and Dr. Califf’s efforts will lead to increased information sharing, understanding, and ultimately, better outcomes for all.