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Term

Definition

Data use agreement

A Data Use Agreement (DUA) is a binding contract governing access to and treatment of nonpublic or sensitive data provided by one party (a “Provider”) to another party (a “Recipient”). DUAs are often required by external parties before they permit data to be received by NACHC and can also be necessary for NACHC data to be disclosed to another organization. DUA terms and conditions vary depending on the laws and regulations governing the specific type of data to be shared, as well as the policies and/or requirements of the Provider and Recipient. Formal agreements in these cases help to avoid misunderstandings and disputes over the use and storage of data, appropriate access and security measures, and other important matters, including publication rights and ownership of results.

NACHC has invested in building a governance infrastructure to support a growing body of data-related work occurring in the clinical affairs division. External partners are sharing data with NACHC through an array of projects. As NACHC’s clinical affairs portfolio has reached a critical mass of data sharing projects, the next step is to implement a data governance structure to build trust among data partners and ensure the highest quality work products.

NACHC convened a data governance council in the fall of 2021 to develop and implementing a governance infrastructure for informatics project work. The data governance council is convened to:

  • evaluate and approve or deny requests for data or analyses from internal or external sources;

  • develop, codify, and disseminate policies and procedures to meet emerging data governance needs and align with stakeholder policies, agreements, and processes;

  • consult on the NACHC response to privacy and security incidents related to data sharing or clinical affairs projects;

  • upon request, review data sharing project issues outside of clinical affairs and make recommendations; and

  • ensure long-term, broadly representative data governance for NACHC.

Priority Data Governance Issues

The priority issues that the Data Governance Council is currently focused on are:

  • Developing standard request and DUA processes including revision of the NACHC DUA template and creation of a repository of DUAs and data products from all active projects

  • Documenting the current and target states of data security and privacy policies and procedures for the larger NACHC team and clinical affairs data assets

  • Establishing guiding principles for data use and translating those principles into procedures and governance infrastructure.

Data Governance Council Members

The current members are:

Julia Skapik (chair) (Clinical Affairs)

Margaret Davis (Training and Technical Assistance)

Andy Gulati (Network Relations)

Amy Flowers (Policy and Research)

Meg Meador (Clinical Affairs)

Jesus de los Santos (Information Technology)

External: Greg Raglow (El Rio Health)

External: Andrew Hamilton (AllianceChicago)

Data Governance Council Charter

View file
nameNACHC GC Charter_20221206.docx