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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 willis 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 requestsrequest, 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 GC members are:

  • Ronald Yee

  • Julia Skapik (chair

    )Gervean Williams

    ) (Clinical Affairs)

    Margaret Davis (Training and Technical Assistance)

    Andy Gulati (Network Relations)

    Amy Flowers (Policy and Research)

    Meg Meador

    Jennie McLaurin

    (Clinical Affairs)

    Jesus de los Santos (Information Technology)

    External: Greg

    Pappas

    Raglow (

    FDA

    El Rio Health)

    External: Andrew Hamilton (AllianceChicago)

  • Kathy McNamara

  • Andy Gulati

  • Data Governance Council MaterialsCharter

    View file
    nameNACHC GC Charter_20220111.docx

    Key Data Governance Issues

    The priority issues that the Data Governance Council will address in its first year are:

  • Developing and implementing policy and procedures on data use, data sharing partnership, request processing, and IRB

  • Ensuring that NACHC adheres to laws and best practices regarding data security and privacy

  • Using a standard process for developing and executing data use agreements to clarify the expectations of NACHC, data partners, and other project partners

    20221206.docx