| Data Privacy and Data Sharing in Clinical Trials |
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There is increasing interest in data privacy and data sharing in clinical trials. Most publicly available information is targeted towards individuals with training/experience/expertise in these areas. This project focuses on creating engaging content organised into bite-sized videos, which includes an introduction and six short videos in this series covering frequently asked questions that can be understood and used by the general population (any member of the public regardless of their sector or profession). Ultimately, this understanding will enable viewers to become more informed, thus helping to have a positive impact on their families and the wider community. This Community Forum event will take place over Zoom on 21 February 2023, 15:00–16.30(GMT)/10:00–11:30(EST). |
| 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 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. |
| Resources |
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Video 0: Introduction https://youtu.be/UKZmYLygP-0 Video 1: Importance of Clinical Trials https://youtu.be/LhSF7DZmwkc |