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 will:
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 requests, review data sharing project issues outside of clinical affairs and make recommendations; and
ensure long-term, broadly representative data governance for NACHC.
Governance Council Members
The current GC members are:
Ronald Yee
Julia Skapik (chair)
Gervean Williams
Meg Meador
Jennie McLaurin
External: Greg Pappas (FDA)
External: Andrew Hamilton (Alliance Chicago)
Kathy McNamara
Andy Gulati
Governance Council Materials
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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