News – October 2016

Reagan-Udall Foundation Hosts First BD4P Training Workshop

BD4P logoOctober 24, 2016: The Reagan-Udall Foundation for the FDA (RUF) hosted the first Big Data for Patients (BD4P) Training Workshop on October 13-15 at Gallaudet University in Washington, DC. The training brought together a diverse group of patient advocates from around the country to engage in thought-provoking discussion and learn more about big data use in advocacy and healthcare.

Participants for the multi-day training included advocates with varied disease focuses and diverse levels of experience in both advocacy and big data. Subject matter expert instructors from data science, advocacy, the FDA, the NIH, and other areas led presentations and discussions around issues of importance including data-driven research, interoperability, legal and ethical concerns, and data privacy and ownership.

The purpose of the BD4P program and workshop is to give patient advocates a basic understanding of the science of big data to enable them to participate more fully and effectively in big data initiatives. The program serves to empower patients and advocates by enhancing data science literacy and critical appraisal skills. The primary goal of BD4P is to develop a community of informed and empowered patient advocates who understand what big data is, how it is being used in research and medicine, its promises and limitations, and its impact on patient advocates.

Feedback and evaluations from the first training will be used to help shape subsequent workshops and the overall program moving forward. To receive the most up-to-date information about BD4P, including upcoming events and future trainings, sign up here to receive program updates.