data2health/governance-pathways

CTSA Data Sharing Governance Pathways Project

governance-pathways

CTSA Data Sharing Governance Pathways Project

Problem statement

Clear governance pathways within and between CTSAs are needed to expediently allow safe sharing of electronic health data for research. This project provides governance "Pathways" documentation to promote collaborative and flexible data sharing for CTSA hubs.

Project description

Clear governance pathways within and between CTSAs are needed to expediently allow safe sharing of electronic health data for research. Some CTSAs have multiple collaborating institutions within their institute, who own data (e.g., EHR derived health system data), but struggle to create governance agreements to share the data for research. CTSAs also take on laborious honest brokerage processes and others are struggling to tighten their governance to be in full compliance. CTSAs need clear guidelines and governance vehicles to execute safe and compliant data sharing with individual researchers and across institutions. This project aims to create a library of DUAs and best practice information, a Master Data Use agreement that can be flexibly populated as a template, and "Pathways" documentation for CTSA hubs to aid decisionmaking and authoritative data sharing. The ultimate goal is to promote collaborative and flexible data sharing across the whole of the CTSA Program.

Alignment to program objectives

TODO see here

Contact person

Point person (github handle)	Site	Program Director
Liz Zampino (ezampino	UW	Adam Wilcox

Leads

Lead(s) (github handle)	Site
Adam Wilcox (@abwilcox)	UW
Christine Suver (@cfsuver)	Sage Bionetworks

Team members

Team Members (github handle)	Site
Adam Wilcox (@abwilcox)	UW
Liz Zampino (@ezampino)	UW
Rania Mussa (@ramussa)	UW
Ann Novakowski (@ankimno)	Sage Bionetworks
Christine Suver (@cfsuver)	Sage Bionetworks

Repositories

https://github.com/EBISPOT/DUO

Deliverables

Get involved

Working documents

The project folder of Google Documents is available to all onboarded participants.

Slack channel

The project slack channel (#governance) is accessible to onboarded participants. You will not automatically be added to Slack; however, we encourage you to please join via the link you are emailed when you onboard (bit.ly/cd2h-onboarding-form).