University of Leicester Data Workshop
HDR UK work in Leicester includes activities that seek to make healthcare related data safely 'discoverable', in order to enable researchers to locate and request data of interest. A discovery service will allow researchers to ask questions of linked datasets in federated databases. For reasons of privacy protection and data ownership, the service will not return the actual data, but information on how many patients or records exist that satisfy the user's query. However, even such information can undermine privacy, e.g., by allowing individuals to be identified if their characteristics are very specific or there are only a small number of cases.
A FREE workshop on this topic will take place at the University of Leicester campus on 1st July between 11am and 4pm, aiming to:
Collect user stories / scenarios regarding how, when and why researchers might want to use a discovery service
Present and receive feedback on the current state of existing discovery tools and their user interfaces
Discuss implications of discovery for privacy and consent to uncover potential conflicts and explore the wider regulatory context
The provisional agenda is as follows:
10.30-11.00 Arrival, tea and coffee
11.00-13.00 Use cases and scenarios
13.00-14.00 Lunch and tool demos
14.00-16.00 Privacy and consent
Some participants may only be interested in certain sessions of the workshop, and so it would be quite OK to just attend the morning or the afternoon session. If you wish to attend either or both sessions, please let us know (along with dietary requirements) by emailing Marc Wadsley (mkw12@leicester.ac.uk).