Xplore RARE-X

Reinventing the Consent Process to Make It Patient-Centric

Before patients contribute their medical information to a research study, they must work through a consent agreement. These documents can be long, difficult to understand, and overwhelming for research participants to complete. Often consent agreements are crafted to serve the legal needs of the institutions conducting the research and fail to contemplate or allow for the future use of data beyond the immediate intended use. The consumer health technology platform Ciitizen and the nonprofit rare disease data platform provider RARE-X, have each sought to reinvent the consent process to make it patient-centric. We spoke to Deven McGraw, chief regulatory officer for Ciitizen and Vanessa Vogel Farley, research & data governance lead for RARE-X, about the consent process, why it was necessary to reinvent it, and what a patient-centric consent process looks like.

Share on Facebook
Share on Twitter
Share on LinkedIn
Share via Email
Translate »