Working Group: Extending Control#

Chair: James Fleming (standing in for Pete Barnsley)

Prompts#

  • see Notes for Problem questions

Notes#

Problems?

  1. How to minimise time to research?

  2. How to combine datasets easily? ← Physically? Logically/virtually?

  3. Citizens agency

Typically local information governance around one dataset at a time. However, how can we bring together many datasets while maintaining some information governance boundary?

Data federation in current practice / examples

  • OMOP model for health datasets

  • Should there be a playbook to work too? OMOP is a ‘step’ in a playbook for standardising.

  • Open Safely (but limitation in data - COVID, Primary GP data)

  • UK LLC (longitudinal studies) single governance access route across data from the various longitudinal studies

  • Scottish Regional Safe Haven Network Federated Governance project

  • FEMS

  • Synthetic Data Project across Scottish Safe Havens

  • Scotland Caldicott Guardian sharing / accepting liability

What’s common and what’s distinct across the existing federated projects around governance?

What changes do we want to see? Enablers & Barriers

  • Barrier: Liability between data controllers

  • Barrier: Understanding of the data, and it’s limitations, between controllers/researchers/DPOs etc

  • Barrier: Desire to monetise vs. data quality/feasibility of projects

Addition by attendee: We need to develop systems where we have trusted research groups within institutions and that governance from one organisation can be directly correlated/equated with the governance from another e.g. a trusted researcher passport - as a governance person I am aware that we only value processes within our own institution, and that we don’t take the assurances from elsewhere with as much credibility as we sometimes could. I think that if we look to develop a trusted researcher passport which works in a cross-institutional way, then we can look to reduce the time to conducting analysis. The benefit of this would be that there would be an additional level of transparency there, where other institutions would have sight of all of the research interests of an individual/research group. It’s not 100% thought out, but represents an evolution in how federation between institutions could work.