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Data Transparency

Active since 2014, PHUSE’s Data Transparency Working Group has provided subject matter expertise for the review of draft deliverables and guidance documents from regulatory bodies (such as the EMA and Health Canada), as well as other industry organisations (such as TransCelerate) and academia. Since their inception in 2020, the free-to-attend Data Transparency Events have gone from strength to strength. These virtual events have created an unrestricted space where questions can be asked and challenges addressed. Individuals passionate about the area can come together to share vital knowledge, develop new ideas and spark innovation through presentations, panel discussions and Q&A sessions alongside experts in the data-sharing field.

The PHUSE 
Data Transparency Autumn Event 2024 – Registration now Open

The PHUSE Data Transparency Autumn Event will take took place from 17–19 September 2024. Data Transparency Events offer you the chance to gain knowledge and experience from a wide data transparency community, allowing you to come together with experts from a variety of companies and backgrounds.During this virtual event, presentations will be were delivered across the three days in bitesize chunks from 15:00-17:30 (BST). There will also be . Each day also hosted a panel discussion and Q&A session focused on the day's themes.

Visit the PHUSE archive for all previous event recordings and presentations. 

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Agenda Presentation TitleSpeaker(s)Day 1 – 17 SeptemberEvent-Based Access Control – Game Changer for Autonomous Security and Transparent Data SharingAmit Gautam, AbluvaRare Disease Data – Overcoming Barriers to Controlled Access SharingHelen Spotswood, Roche & Karolina Stepniak, AstraZenecaOptimising the Utility of Anonymised Data: A Clinical Case StudyLisa Pilgram, University of OttawaDiversity in Clinical Trial Data Transparency: A New Horizon for Data Sharing with Truthful StatisticsLuk Arbuckle, Privacy Analytics & Stephen Bamford, Johnson & JohnsonDay 2 – 18 SeptemberDisclosure Without Exposure – Upstream Strategies for Enabling AI to Effectively and Efficiently Protect Clinical DataHonz Slipka, CertaraHarnessing the Power of Artificial Intelligence (AI) in Accelerating Production of Clinical Documentation: A Case Study with Plain Language Summaries (PLS)Kathi Künnemann, StaburoDe-identification of Medical Data for AI Training, Speeding up Clinical Trials, and Enabling Healthcare Research

Patricia Thaine, Private AI

Leveraging Agentic AI Networks to Automate Transparency ActivitiesWoo Song, XogeneDay 3 – 19 SeptemberPrivacy Methodology Implementation: Sharing Experience from the FieldVéronique Poinsot, SanofiTrue Re-Identification Risk Threshold – Aggregated-Level Clinical Information Impact on Anonymisation Methods Applied to Individual Patient-Level Data (IPLD)Agnieszka Głowińska & Łukasz Szyszka, AstraZenecaWriting Better CSRs to Facilitate Anonymisation for Clinical Data PublicationCathal Gallagher & Laura Dodd, InstemA Data Transparency Odyssey - A Decade of Data SharingAlex Hughes, Roche & Brent Caldwell, Novartis

Presentations and event recordings will be available soon. 


Data Transparency Autumn Event Sponsors 

Virtual Event Sponsors


Sponsor Flyers 

                                                                  


Sponsorship 

Hosting the Data Transparency Event digitally means that no matter where you are in the world you can participate. It provides the industry with a broader opportunity to share knowledge on a global scale, connecting through the virtual event platform. The sponsor options offer a range of benefits with ample company exposure. See the prospectusfor more detail. 

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Data Transparency Working Group Leads