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New Working Group Lead for Data Transparency |
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The Data Transparency Working Group welcomes a new lead Abby McDonell! Abby previously co-led the PHUSE Good Transparency Practice Working Group project, where she helped define best practices for data transparency and created guidance to ensure anonymised data complies with legal requirements while preserving data utility. Abby is a Senior Program Manager for the Clinical Trial Transparency team at Privacy Analytics. Abby leads teams that leverage advanced AI-enabled technology to deliver anonymisation services for top 10 pharma customers. |
Working Groups Q2 Reports |
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The Working Groups Quarterly reports are now published! These reports provide an overview of each of our projects, highlighting key achievements and ongoing activities. You can view the reports and learn about what our Working Group projects have been up to in Q2 here. Additionally, you can find a breakdown of the events that have taken place here. |
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Data Transparency |
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The Good Transparency Practicesproject have published a new White Paper. Good Transparency Practice (GTP) is a guideline developed by the PHUSE Data Transparency Working Group to create a set of best practices to govern the anonymisation of clinical trial data, for external sharing or disclosure. Although there are transparency initiatives across the globe, with differing guidelines, the common goal is to uphold patient privacy and data utility to the highest standards. |
Data Transparency |
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The Rare Disease/Small Population Data Sharing project within the Data Transparency Working Group have published a new White Paper. The purpose of this white paper is to review potential barriers to the sharing of rare disease data such as risk of re-identification and invasion of privacy (balanced against maintaining data utility) to understand if and how these barriers apply to controlled access data sharing under specific contextual assumptions |
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Real World Evidence: Calling For Feedback |
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The RWD Guideline for Programming and Analysis Processes project within the Real World Evidence Working Group has produced a White Paper, ‘RWD Guideline for Programming and Analysis Processes’ which is calling for feedback. As per FDA1.1, Real-World Data (RWD) are data relating to patient health status and/or the delivery of health care routinely collected from a variety of sources. Examples include data derived from Electronic Health Records (EHRs), Claims and/or billing data, Product and/or disease registry data, other data sources that can inform on health status (e.g., data collected from wearables, patient generated data). Please provide your comments by emailing workinggroups@phuse.global. Closing date for comments: 5 September. |
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