About this Event
Description
A Symposium to think critically about the use of data, and how we balance innovation in data-intensive research with public trust, accountability, and evolving public opinion.
Lunch is provided.
Venue
In person - Leolin Price Lecture Theatre, UCL Great Ormond Street Institute of Child Health.
Target audience
- Students and researchers in data science with interest in ethics (in collaboration with the Bioethics Society)
- Users of linked administrative and health data, and methodologists working in linkage, governance and infrastructure (including members of the ITALO and SPRINT networks, and DARE UKβfunded communities)
Proposed outcome
Participants will leave with clearer language and a practical framework for talking about βwho owns dataβ, along with concrete ideas for how to embed public voices into data governance and project design, so they can better justify, adapt and communicate their data practices in ethically robust, socially responsive ways.
Organisers
Jo Lam (UCL GOS ICH), Miranda Leung (UCL Bioethics Society), Aaron Koay (The UCL Critical Global Health Network), Catherine Stewart (UCL GOS ICH).
Funding
This symposium is funded partly by Research England's Higher Education Innovation Fund (HEIF), managed by UCL Innovation & Enterprise, and partly funded by Health Data Research UK, Data and Analytics Research Environments UK, UK Research and Innovation - Digital Research Infrastructure (DRI) Fund.
Collaborators
Health Equity Special Interest Group, Improving Transparency Around Linkage Outputs (ITALO, DARE UK interest group), Single Patient Record Integrity, Transparency and Trust (SPRINT DARE UK working group), UCL Bioethics Society, The UCL Critical Global Health Day, Mind and Society Network.
If you have any questions, please contact Jo Lam - [email protected].
Agenda
π: 09:30 AM - 09:40 AM
Welcome & housekeeping
π: 09:40 AM - 10:05 AM
Who Owns Data? Contemporary Issues
Host: Jo Lam, UCL
π: 10:05 AM - 10:50 AM
Balancing Intellectual Property and Innovation
Host: Jonny Pearson, NHS England
π: 10:50 AM - 11:00 AM
Break
π: 11:00 AM - 11:50 AM
International digital data, linkage and ethics
Host: Molly Pugh-Jones, STOPAIDS
π: 11:50 AM - 12:35 PM
Public Voices in use of administrative data
Host: Farheen Yameen, Georgina Ferguson-Glover, Jan Speechley
π: 12:35 PM - 01:30 PM
Lunch
Info: Lunch is provided
π: 01:30 PM - 02:20 PM
PEDRI PPIE Good Practice Standards
Host: Shayda Kashef and Anna Woolman, PEDRI
π: 02:20 PM - 03:15 PM
Keynote
Host: TBC
π: 03:15 PM - 04:00 PM
Networking
Event Venue & Nearby Stays
UCL Great Ormond Street Institute of Child Health, 30 Guilford Street, London, United Kingdom
GBP 0.00












