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This page houses the data governance policies and procedures 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 data sharing work' hereinafter.

What Does Data Governance Mean to NACHC? 

Data governance is central to effective data sharing work. NACHC defines data governance as a framework to guide the usability, integrity and security of data and to instill trust in the use of data and data-related sources across systems. At NACHC, the data governance infrastructure encompasses a decision-making body, rules (policies and procedures), decision rights (how we “decide how to decide”), accountabilities, and enforcement methods for people and information systems as they perform information-related processes.

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NACHC's organization-wide data management, privacy, and security practices and infrastructure is directed and managed by the information technology (IT) department. Within that context, NACHC operates a Data Governance Council ('GC') to advise on their portfolio of informatics work. Informatics work data-sharing work which may be housed within the Clinical Affairs Division (CAD) or work led by other divisions that has a data sharing component. The GC does not provide direct informatics project oversight, but does make recommendations and decisions about project participation, implementation, and the technical architecture used to carry out informatics projectsdata sharing work. A description of the NACHC data and informatics technical architecture is available here. 

The GC meets monthly and includes members who represent 1) NACHC leadership, regulatory, and analytic staff, and 2) external data partners and project partners who represent a range of perspectives and collective expertise in clinical care, informatics, data science, and population health. Details of the GC membership, scope, and operations (e.g., scope, voting) are defined in a charter. 

Roles 

NACHC conducts informatics data sharing work in partnership with data partners and project partners. 

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A project partner is an organization who participates in or supports informatics data sharing work by providing subject matter expertise, funding, vendor services, or other technical assistance. Vendor services may include analysis which can require direct access to project data.

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NACHC organizes and tracks informatics work in projects. Depending on the scope of the project, a project may have one or multiple datasets from one or more data partners that is housed by NACHC.  Most projects use Confluence to manage information and safely share data through a Confluence website which defines the project team, provides links to relevant project documentation and agreements, location of project data, and tracks project progress.  Projects have regular status meetings. Minutes and meeting materials from status meetings are made available on Confluence.  At the start of each project, a project team is identified and includes members of the data contributor and NACHC staff and documented on the project Confluence page. Additionally, members of the project team who will have access to project data are identified at the project inception. As the project team evolves through the project lifecycle, the project team is updated on Confluence and in project-related documentation, as appropriate.

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Services

NACHC's informatics data sharing 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. 

Subject matter expertiseTechnical assistance*Data managementAnalysis services*
  • Providing guidance materials and sharing knowledge with data  partners on how best to collect, store, and use their data
  • Sharing best practices from the field
  • Creating and sharing tools for a specific use case
  • Identifying translatable resources
  • Coaching and assisting data partners to improve the quality of their data collection and use 
  • Providing educational programming to cultivate knowledge and build capacity with partners
  • Coaching external and internal requestors in refining analytic requests to be more actionable and purpose driven
  • Improving the use and quality of analytic planning and documentation
  • Receiving, normalizing, and transforming data from partners into a format and structure aligned with analytic goals 
  • Mapping and normalizing disparate data structures and formats into a common data model
  • Conducting data quality activities and identifying data quality issues 
  • Performing analysis on one or multiple datasets to assess a prescribed outcome or outcomes (e.g., the percent of women who received contraception counseling)
  • Calculate a quality measure (e.g., the percent of screening-eligible patients who were screened)


*Technical Assistance and Analysis can involve the support of contractors or other project partners. AT Still University is frequently used for advanced statistical methods. 

Section 2: Data and Resulting Work Products

Data

Informatics work involves Data is either data collected by NACHC or owned by another organization and shared with NACHC, where NACHC acts as a data steward. 

Data Collected by NACHC

For some informatics projects, NACHC collects its own data, usually in the form of surveys that are completed by health centers or member information. 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 is sent to NACHC Need to expand this.

Data Shared with NACHC

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

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A limited data set (LDS) includes data that has been stripped of all 18 HIPAA identifiers, except age, full dates, and five digit zip code, as identified by HIPAA Safe Harbor guidelines.  

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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. Requests ​must 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. Incomplete requests cannot be evaluated and will be returned to the requester. Requesters will be notified ​of an approval or denial within one week of the GC 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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