CONSENT DESIGNED FOR PATIENTS BY PATIENTS: A NEW CONSENT STANDARD FOR PATIENTS PARTICIPATING IN LIFE-SAVING RESEARCH

This webinar will feature a presentation on a new approach to informed consent that enables patients to have choice, control, and transparency over the data they contribute to clinical research studies. Richie Etwaru, Founder of Hu-manity.co, will discuss how a group of data ethicists are working with leading research and standards institutions to develop a standardized framework for Intentional Consent, a new concept that gives patients the ability to choose how their data can be used, who can use it, and what they expect in return for their participation both during a research study and after it has ended.

The discussion, will include the important role of patient engagement in this effort and how patient organizations can become engaged as leading contributors to the development of the Standardized Intentional Consent Framework for all patients.

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