When the Vice-President of the Unites States sends out a call, you can’t help but answer it. Mid-January, VP Joe Biden released the post, Inspiring a New Generation to Defy the Bounds of Innovation: A Moonshot to Cure Cancer, on Medium.com.
In his post, he re-iterates a herculean task to the scientific, technology and medical communities: a moonshot to cure cancer. Access to information is a key component for cancer research. He writes, “But the science, data, and research results are trapped in silos, preventing faster progress and greater reach to patients.” Due to the sensitivity of PHI and risks around its release, VP Biden hit a key point in the above quote – the data they need for the moonshot is locked away.
This challenge is highlighted by Paul Howard of the National Review. Data sharing needs to be embraced by researchers, organizations, and academic medical centers. “There’s…a complex web of privacy regulations at the state and federal levels that discourages data sharing, or provides a ready-made excuse for avoiding it. As a result, everyone pays data sharing lip service, but very few institutions have committed to the kind of massive, routine data sharing that we need to make rapid strides against cancer.”
Balancing the risks and data utility are possible via risk-based de-identification. De-identification is the key to unlocking this data. By incorporating a risk-based systematic method, the organizations releasing their data for research ensure they are protecting patient privacy but also releasing granular data essential to conducting cancer research.
Organizations are already taking these steps. The American Society of Clinical Oncology launched CancerLinQ over a year ago. Using responsible de-identification practices, they developed a learning health system by aggregating de-identified data for research purposes. You can read more about this project here. CancerLinQ is but one organization striving to achieve the impossible: a treatment to wipe out cancer for good.
Cancer MoonShot 2020 is now underway. VP Biden’s post has given new voice to the cause…and made the moon all that much closer.
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