It is well understood that achieving the full potential of precision medicine for all cancer patients depends on the sharing of patients’ genomic and molecular data and clinical information. To this end, several efforts — including the Genomic Data Commons, ORIEN, and CancerLinQ — have been established to facilitate data sharing among clinicians and researchers and to create an open environment in which data sharing is more commonplace. Despite these improvements, patients’ health data is trapped in silos spread across a fragmented cancer ecosystem, which remains one of the most significant obstacles to advancing precision medicine. We believe the solution to this obstacle is to bring trusted third-party research and support organizations together in a coordinated effort to directly engage cancer patients in data sharing.
A New Approach to Safely Sharing Cancer Patients’ Data
To accelerate advances in precision medicine, it is essential to educate patients not only on the importance of their data but also how to access it and where and with whom to share it. The Kraft HBS Precision Medicine Accelerator, which the authors co-chair, set out to systematically solve this problem. Given that other data-sharing efforts have been met with varying degrees of success, they knew that a novel approach was required to truly make progress. They decided to create a direct-to-patient initiative using Collective Impact, a framework for tackling social issues first articulated in 2011 by Mark Kramer and John Kania. Collective Impact is premised on the belief that progress in tackling complex, systematic issues can only be achieved only when multiple organizations (companies, governments, NGOs, nonprofits, and so on) work toward a shared goal. Promising early results suggests that the Collective Impact framework could be used to solve other vexing problems slowing the advancement of precision medicine, including the design of clinical trials and data analytics.