This month in the OHDSI Evidence Network Monthly Meeting we will have a presentation from Jill McDonald at PEDsNet to cover some of the ways they have handled governance challenges in their network. During our meeting at the symposium we heard that governance/IRB approvals are the rate-limiting step for many so we are looking forward to learning from Jill’s experience. We hope you can join us!
Date: November 14, 2024
Time: 10:30am EST
Meeting invite
If you were unable to join, here is the link to the recording.
Meeting Summary
Presenter
Main Points Discussed:
- Purpose of the Meeting:
- Clair welcomed attendees, mentioning they were invited due to their role as data partners in the Evidence Network or participation in recent symposium sessions.
- The aim was to provide updates on the network’s progress, administrative details, and next steps, focusing on expanding the network’s reach among data partners and researchers.
- Administrative Updates:
- Clair shared essential updates on network processes and highlighted plans for scaling the network’s evidence generation capabilities.
- Data Use Agreements (DUAs) and IRB Coordination:
- Jill McDonald discussed the protocol for chart reviews within multi-network studies, emphasizing the use of a master IRB to simplify the process.
- The DUA requirements were streamlined by a central agreement model, exemplified by a project where NYU coordinated data from multiple networks, minimizing the need for each site to sign individual DUAs.
- Decentralized Network Structure and Data Ownership:
- Jill shared insights from the Pediatric Network (PedsNet), stressing the importance of allowing sites to retain data ownership and control over data-sharing decisions.
- PedsNet’s collaborative nature was highlighted, where sites actively participate in governance and research activities, ensuring transparency and engagement in network decisions.
- Value of the Network for Site Participation:
- Jill noted that the collaborative model fosters a sense of community and offers sites the ability to propose and utilize network resources for their own research. This structure enhances the value for participating institutions.
- Closing Remarks and Next Steps:
- Clair expressed appreciation for Jill’s insights and requested sharing of relevant protocols and presentation slides.
- Future collaboration was proposed, with an invitation for Jill to return in a few months to review network progress.
- Clair concluded by confirming the next meeting in December and providing information about weekly office hours.