Data Transparency – Project Volunteer Board
Welcome! |
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Interested in joining one of the Data Transparency Working Group Projects? The projects below below welcome new volunteers. |
Project Description: This project focuses on developing guidance for sharing medical imaging data within the context of data transparency. It begins with a literature review covering image modalities (e.g. X-ray, MRI, CT), formats (e.g. DICOM, NIfTI), anatomical regions, and associated metadata, alongside current practices for data handling, storage and transfer. Medical images present unique challenges due to their complexity and the sensitive metadata they contain, which poses significant privacy risks. At the same time, demand for access to image data is increasing alongside broader data sharing requests. The project will identify high-impact use cases aligned with clinical data requests and prioritise those based on relevance and complexity. A key focus will be metadata processing and anonymisation, where risks are highest. The outputs will summarise existing guidance, identify gaps, and provide a foundation for consistent, industry-wide approaches to image data sharing. | Regular Project Meeting Day/Time:
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Educate the General Population on Data privacy and Data Sharing | |
Project Description: This project develops engaging, accessible content on data privacy and data sharing for a general audience, regardless of background or expertise. It builds on the approach of the Data Transparency Terminology Harmonisation project, extending it beyond technical users to address commonly asked questions in a clear and practical way. With growing public interest in how data is collected, used and shared, much existing information remains too complex or technical for widespread understanding. This initiative aims to bridge that gap by creating content that is easy to understand, relevant and actionable for non-specialists. The project will deliver user-friendly educational materials that improve awareness, understanding and confidence in data privacy and sharing topics. By making accurate information more accessible, it will support more informed public engagement and promote better understanding of data use across society. | Regular Project Meeting Day/Time:
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Project Description: This project aims to generate quantitative evidence on the value of plain language summaries (PLSs) through a cross-industry, multi-stakeholder collaboration. The team will design and deploy a survey on platforms hosting PLSs to collect feedback from trial participants and the general public, followed by analysis and reporting in a white paper. While significant effort has been invested in producing PLSs to enhance transparency and engagement, there is limited measurable evidence of their impact and use. This initiative addresses that gap by capturing real-world insights into how PLSs are accessed, understood and valued by their intended audiences. The outputs will provide evidence-based recommendations to support continued investment in PLS development and dissemination. In addition, findings will help identify opportunities to improve content, usability, and overall user experience, strengthening the effectiveness of PLSs in communicating clinical trial results. | Regular Project Meeting Day/Time:
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