Data Privacy and Data Sharing in Clinical Trials |
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The PHUSE Educate the General Population on Data Privacy and Data Sharing in Clinical Trials project, part of the Data Transparency Working Group, is producing short videos to enable the general public to better understand clinical studies, with a focus on data privacy and data sharing when participating in a clinical trial. Following the Community Forum, post meeting discussions will take place on Disqus. This is a great opportunity to discuss your ideas further and provide feedback on the videos. This Community Forum event will take place over Zoom on 21 February 2023, 15:00–16.30(GMT)/10:00–11:30(EST). Register here! |
Presenter | Bio |
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Devaki Thavarajah, Instem Devaki partners with pharmaceutical clients, members of the research and healthcare community globally to help meet their clinical trial transparency and disclosure requirements. | |
Deborah Collyar, Founder and President, Patient Advocates in Research (PAIR) Deborah Collyar has been a leader in patient engagement and advocacy since her first cancer diagnosis. Her business leadership, IT, and communication skills bridge gaps between scientists, medical providers, and patients. Deborah founded the Patient Advocates in Research (PAIR) international communication network in 1996, "where research meets reality," and consults with health and medical research communities. Deborah infuses patient representatives into projects and gathers relevant input from patients. Her work encompasses many diseases, programs and policies at grassroots, national and international levels with companies, academia, and governments. Key insights are delivered throughout development, clinical trials, results reporting, data-sharing, standards, transparency, and into practice. |