NACHC is committed to a trusting, transparent, and mutually beneficial relationship with organizations from whom data are received (‘Data Partners’) and other stakeholders. Data governance refers to the policies and procedures that clearly define roles and responsibilities and instills between Data Partners and NACHCs collaborators. The purpose of this page is to describe NACHC's perspective on data governance and provide documentation that supports NACHC partners.
NACHC has defined a data governance approach that is customized for each project and Data Partner’s needs. Regardless of the project, NACHC commits to the following:
- NACHC only receives data through HIPAA-compliant secure tools and offers those to Data Partners as part of project participation
- NACHC stores data securely with Amazon Web Services
- NACHC adheres to data management standards and best practices
- NACHC does not attempt to re-identify patients
- NACHC collaborates with Data Partners and project partners to clean, transform, and validate data to ensure accurate interpretation
- NACHC only uses data for approved uses, as defined in the project contract and DUA
- NACHC does not perform analysis beyond the project scope without approval from Data Partners, but when additional opportunities arise, NACHC will bring those opportunities to Data Partners for review
- NACHC presents project data in aggregate form unless Data Partners have agreed to display data at the health center level
- NACHC does not sell data
- NACHC will offer Data Partners the opportunity to review any new work products where their data was used
- NACHC responds to project-related analytic or informational requests from Data Partners
- NACHC will destroy data upon the request of Data Partners who are free to terminate data sharing at any time
Governance Decision-Making
In 2021, NACHC convened a data governance council to establish and operate a data governance infrastructure. The council meets monthly and includes NACHC and external representatives. Information about the data governance council is avialable herebetween parties when data sharing is involved. A suite of Confluence pages have been developed to describe the NACHC data governance infrastructure including:
- Clinical Affairs Division Data and Informatics Architecture - A description of the Clinical Affairs data infrastructure that holds clinical and UDS data.
- Guiding Principles and Governance for Data Use - A high level description of what data governance means and the principles that NACHC abides by to ensure that data is used appropriately
- NACHC Data Governance Policies and Procedures - NACHC's primary governance document that holds all data governance related policies.
- Data Governance Council - A description of NACHC's data governance council, the primary advisory and decision-making boy and links to governance council meeting materials.
- Data Governance Materials - A repository of data governance materials for use by NACHC staff with internal and external audiences.
- Summary of Data Security and Privacy Practices - A description of NACHC data security and privacy policies.
Questions?
If you have additional questions about NACHC data governance contact XXXXXXXXXthe chair of the data governance council.