Figure 1. Open-access model for patient data sharing. Two groups are hoping to make patient health and outcome data-and associated genomic and molecular information-openly available to facilitate translational research.

Sage Bionetworks launched a portal through which users can contribute their own health and genomic data, and a report from the U.S. National Academy of Sciences is calling for the creation of a national infrastructure for accessing and analyzing open-source patient data.

In these models, health and molecular data is collected from clinical trials and routine health visits [a] using a legal framework that protects privacy and ensures appropriate downstream uses [b].
The data from individuals [c] are then de-identified [d] and made available for academic and industry research, as well as ultimately to inform clinical care [e].