Abstract

The ImproveCareNow Network Participation and Data Use Agreement defines the common guidelines and principles that network members agree to when they join the ImproveCareNow collaborative. It describes the data that will be collected, how it will be shared, the purposes for which it will be used, etc. This document has been essential for defining the legal and regulatory framework under which the network operates, making centers much more comfortable about contributing their data to the ImproveCareNow registry.

Publication Date

2013

Governance Topic

Legal and regulatory concerns, Data sharing approaches and considerations, Sustainability

Type of Governance Resource

Sample Agreement/Contract

Healthcare Setting(s) in which Data were Collected

Academic medical center(s), Community health center(s), Inpatient facility(ies), Primary care or ambulatory clinic(s), Specialty clinic(s)

Data Types

Electronic Health/Medical Records (EHR or EMR), Patient-Reported Outcomes

Generalizability to Other Settings

An agreement of this type is essential for any network or registry that wishes to share data among participants for research, QI or clinical support.

Network Description

At the time of submission to the EDM Forum Governance Toolkit (August 2013), ImproveCareNow was comprised of more than 50 care centers, ranging from small private practices to large academic health centers, including many of the nation’s top children’s hospitals (https://improvecarenow.org/about/who-we-are).

Geographic scope type

Multi-State

Acknowledgement of Funders

This work was funded in part by R01HS20024 from the Agency of Healthcare Research and Quality.

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