Governance Lab Ideas Lunch: Open Design Patterns For Informed Consent
Open Design Patterns For Informed Consent
Persistent issues with data exchange and the confusion around portability of patient records are barriers to understanding the population’s health and health outcomes. While a comprehensive policy solution to portability of patient information and preferences about the use of their data is not likely in the near term, there are innovative non-policy strategies to address the problem that seek to put the patient at the center of the solution. At Sage Bionetworks, we have created an open source toolkit for creating “user interfaces” to informed consent documents for clinical studies, assisting in comprehension of the underlying legal text and allowing the creation of consent processes that work well with mobile devices and thew web. This talk will lay out the rationale for the toolkit, demonstrate its key components, and address emerging implementations for informed consent in different contexts.
John Wilbanks is the Chief Commons Officer at Sage Bionetworks and a Senior Fellow at Faster Cures. He has worked at Harvard’s Berkman Center for Internet & Society, the World Wide Web Consortium, the US House of Representatives, and Creative Commons. John is a past affiliate of MIT’s Project on Mathematics and Computation and also started a bioinformatics company called Incellico, which is now part of Selventa. He advises the National Coordination Office’s NITRD program, sits on the Board of Directors for Impact Story and the TransMART Foundation, and sits on advisory boards for Boundless Learning, Curious, GenoSpace, and Patients Like Me. John holds a degree in Philosophy from Tulane and studied modern letters at the Sorbonne.