The field of data transparency within clinical development is fast-moving. PHUSE recognised the need to share information, advice and suggestions across all pharma companies (big and small), vendors and software companies, in a way that would not be cost-prohibitive – and so, the PHUSE Data Transparency Multi-Day Meeting was created.
Our first event was the Summer Meeting, back in June 2020. We have just held our second Meeting – the Data Transparency Winter Meeting (19th–21st January) – which strengthened PHUSE in its place as the world’s largest home for data transparency events(based on numbers from 2020 and 2021).
This event creates a space where global individuals passionate about the topic of data transparency can come together to spark innovation and explore new ideas – and our attendees did just that. Engagement was high, with participants asking questions and expressing interest in registering for the next Meeting.
The Data Transparency Winter Meeting ran for 2.5 hours each day from 15:00 to 17:30 (GMT). Each day explored a key topic: New Challenges for Data Sharing, Regulatory Submissions, and Explore Technologies. Attendees had the opportunity to listen to three/four live presentations, and then participate in a joint panel discussion/Q&A session based on the content from the day.
The event saw a variety of innovative presentations including:
- Data sharing of genetic data and rare diseases
- Experiences with regulatory submissions and insights into the MHRA Data Transparency approach
- Use of synthetic data to support under-recruiting studies
- Programming languages to implement data de-identification
- Data disclosure strategy
- Use of Plain Language Summary to support patient engagement
If you were unable to attend the event, you can catch up on demand via the PHUSE Engagement Hub.
In the PHUSE Community spirit of open knowledge sharing, this multi-day event is free to attend. We would like to give a huge thank you to our sponsors, who helped make this event possible.
PHUSE’s Data Transparency Working Group – Welcoming Sarah Balay and Shannon Lefaivre
*We are pleased to announce that Sarah Balay, Privacy Analytics (left) and Shannon Lefaivre, *Roche (right) have joined the PHUSE Data Transparency Working Group Leadership team. During the recent Data Transparency Winter Meeting, they both had a chance to introduce themselves to the PHUSE Community and hosted Day 2 and 3 of the event.
Their diverse background and strong expertise in the fields of data anonymisation, data sharing and data governance, as well as their experience as researchers, will be a great asset for the Working Group. We very much look forward to working with them. Here’s what they have to say about their new roles within the Data Transparency Working Group.
Dr Sarah Balay is a Senior Anonymization Expert and Technical Lead for the Clinical Trial Transparency (CTT) business unit at Privacy Analytics.
"Being part of the PHUSE Community is a wonderful and exciting experience. The collaboration and knowledge sharing exhibited by PHUSE, through conferences and Working Groups, plays a phenomenally important role in advancing the field of data transparency.
Being able to further contribute to this community by co-leading the Data Transparency Working Group is a fantastic opportunity that I am extremely privileged to have. I look forward to the continued collaboration across industry, academia and regulators for the advancement of knowledge and transformation in the data transparency landscape.”
Shannon Lefaivre is a Data Privacy Technical Lead at Roche.
“The PHUSE Community is an excellent forum for collaboration across stakeholders and has produced deliverables that have really impacted the data transparency field. I am ecstatic about the opportunity to join the leadership team. I look forward to getting to know all the Working Groups members, learning together and supporting projects that continue to have a positive impact on data transparency.”
