PHUSE would like to thank all presenters that took part in the Data Transparency Summer Event 2023. If you did not get the chance to attend the event, click the titles below to view the presentations. All recordings are available on the Engagement Hub. Data Transparency Summary-Day 1of the Data Transparency Summer Eventkicked off with four engaging presentations focused on data anonymisation techniques.Nastazja Laskowski (Roche) shared with us important messages that came out of an industry survey Roche conducted. She discussed the technical challenges anonymisation of documents poses and the progress industry has made where quantitative approaches are used for risk determination. Nastazja also touched upon knowledge graphs for re-identification attacks using multiple data sources and the risk they could pose in the future. Boris Grimm (Boehringer Ingelheim) and Jeppe Manuel (Novo Nordisk) detailed the approach outlined in TransCelerate’s Privacy Methodology for Cross-industry Clinical Data Reuse white paper, which has been through a thorough public review. This new guidance touches upon seasonality and genomic data and is planned to be launched in September 2023. Luk Arbuckle (Privacy Analytics) spoke about governance and how we can standardise processes and practices around data sharing. Luk discussed the ISO/IEC 27559 risk-based framework and its foundation as well as the different anonymisation approaches and techniques to consider. And finallyFinally, Parveen Kumar (GENINVO) shared their experience of handling requests for CTIS redactions and the learnings they have made so far. Parveen emphasised the amount of manual work this requires and discussed automation where possible to ease the burden. Day 2 continued to focus on data transparency operations and regulations. |
Presentations & Recordings | ||
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The recordings from all three days are available on the Engagement Hub. | ||
Date | Presentation | Author (s) |
Day 1: 20 June | Parveen Kumar, GENINVO | |
Data Transparency and Anonymisation: An Exploration of Industry Practices | Nastazja Laskowski, Roche | |
TransCelerate’s Privacy Methodology for Cross-industry Clinical Data Reuse | Boris Grimm, Boehringer Ingelheim & Jeppe Manuel, Novo Nordisk | |
Luk Arbuckle, Privacy Analytics | ||
Day 2: 21 June | Regulation and its Effect on Patient Data and the Progress in Science – An Ethical Approach | Peter Kapitein, Inspire2Live |
Vidhi Vashisht, Krystelis | ||
Karen Quigley, EMA | ||
Ankur Patel & Sanjay Bagani, Xogene | ||
Day 3: 22 June | Niamh McGuinness, Privacy Analytics | |
Sheetal Bagul, GENINVO | ||
Sharing Data Internally – Secondary Data Use within Organisations | Lukasz Kniola, Biogen |
Sponsorship | |
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Prospectus and Application Form | |
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PHUSE offer a variety of sponsorship packages which may include visibility on the event platform, a promotional video shown live during the event, or your logo displayed throughout all event communications. If you would like to sponsor one of the Data Transparency events in 2024, please contact events@phuse.global with details of the package(s) you’re interested in taking out. Sponsorship package details will be available soon. For other information on how to get involved, email workinggroups@phuse.global. |
Past Events |
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