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NACHC has invested in building informatics a governance infrastructure and developing services to support a growing body of data-related work occurring in the clinical affairs division. External partners are sharing their clinical and administrative data with NACHC through an array of informatics projects. As NACHC’s informatics 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 as part of developing to develop and implementing a governance infrastructure for informatics project work. The data governance council willis convened to:

  • review and discuss internal and external evaluate and approve or deny requests for data or data-related project participation;

  • approve or deny data requests from external partners;

  • approve or deny requests for access to data stored within the NACHC environment;

  • make recommendations regarding data-related project participation;

  • define, discuss, approve, document and track new 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 breaches sharing or vulnerabilitiesclinical affairs projects;

  • ensure NACHC data governance policies and processes do not infringe on stakeholder policies, agreements, and processesupon 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 GC members are:

Ronald Yee

Julia Skapik (chair

)
  • Julia Skapik

  • Gervean Williams

  • Meg Meador

  • Jennie McLaurin

    ) (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

    Pappas

    Raglow (

    FDA

    El Rio Health)

    External: Andrew Hamilton (

    Alliance Chicago

    AllianceChicago)

  • Kathy McNamara

  • Vacheria Tutson

  • Data Governance Council MaterialsCharter

    View file
    nameNACHC GC Charter_20211019.docx

    Key Data Governance Issues

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

  • Developing and implementing a systematic process to respond to data requests

  • Policy and procedures around IRB

  • Security and privacy policies, procedures, and communications to staff

  • Revision of the DUA templates and expansion of agreement types to accommodate diverse projects

    20221206.docx