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Data governance policies and procedures to inform data-related activities were developed by the NACHC Clinical Affairs team in partnership with other NACHC teams and external partners. These policies and procedures can be applied to any activities where data is received, collected, or generated, referred to as 'informatics work' hereinafter.

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For some informatics projects, NACHC collects its own data, usually in the form of surveys that are completed by health centers. Do we want to say any more here?These surveys will be anonymous and do not collect patient identifiers if received or held directly by NACHC. If a health center is gathering a survey with patient identifiers, these will be removed at the health center or partner level before the data are sent to NACHC.

Data Shared with NACHC

There are two types of data that may be shared with NACHC.

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Included in data shared with NACHC are the UDS datasets that are counts at the health center level. These data are deidentified according to HIPAA but are sensitive and do identify health centers. A UDS-specific data use agreement stipulates how UDS data can be used by NACHC (where would this be found)?– Emily Kraus (Unlicensed) this document exists at an organizational level and we believe the language should come from the HRSA-NACHC agreement. 

Informatics Services

NACHC's informatics work includes the following services: subject matter expertise, technical assistance, data management, and analysis services, which are defined in the table below.  Most informatics projects involve multiple informatics services. 

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Section 3: Data Security and Privacy

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Section 4: Other Governance Topics 

Requests

NACHC receives many requests for data that has already been shared with them for an existing project or a request for data related to a new project. Additionally, NACHC receives requests for information partnership meaning a desire from one organization to partner and share data with a health center through support from NACHC.  

Requests for data or information partnerships are evaluated by the GC which meets monthly. Requests can be submitted here. Emily Kraus (Unlicensed) Efetobore Omadevuae (Deactivated) can help you with this Requests ​must be well defined meaning that they include a detailed description of what data is desired, how the data will be used, the type of use (e.g., research, surveillance, quality improvement or other) and how the request aligns with the NACHC vision and benefits health centers. Incomplete requests cannot be evaluated by the and will be returned to the requester. Requesters will be notified ​of an approval or denial within one week of the data governance council meeting. ​

For requests of data that NACHC has received for other projects, NACHC is not a data owner but a steward of data from other contributing organizations​. Thus ​a request ​approval from ​NACHC's data governance council is the first in a series of required approvals. Approved request will be shared with the originating data contributor ​and if approved by the data contributor, a data use agreement to define the parameters of the data exchange must be executed before any data can be shared. 
NACHC is facilitator of information partnerships​ rather than a broker of data​. NACHC strongly prefers building an information partnership with the goal of collaboratively developing a data sharing project that is beneficial to all parties involved.  

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