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Nov 2024 OHDSI Evidence Network Monthly Meeting

General
#1

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

#2

If you were unable to join, here is the link to the recording.

Meeting Summary

Presenter

  • Jill McDonald (PEDSNet)

Main Points Discussed:

  1. 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.
  2. Administrative Updates:
    • Clair shared essential updates on network processes and highlighted plans for scaling the network’s evidence generation capabilities.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
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