The content below was developed by the NACHC Clinical Affairs team in partnership with other NACHC teams and external partners engaged in current projects involving data.
Governance Guiding Principles
There are four domains of governance that are relevant to NACHC's work: data governance, information governance, software governance, and partnership governance. Within those domains, NACHC adheres to eight governance principles: accountability, transparency, integrity, protection, compliance, availability, retention, and disposition. Definitions of each are available on a related site. Governance topics within each domain and principle are addressed in the policies and procedures below.
Roles and Responsibilities
NACHC conducts informatics work in partnership with data partners and project partners.
A data partner is an organization providing data to NACHC and can organizations providing direct health services such as health systems or federally qualified health centers (FQHCs). A data partner can also be primary care associations (PCAs) and health center controlled networks (HCCNs) who serve in a dual role of being a data steward for clinical data at a local, state, or regional level and contribute data to NACHC on behalf of their member organizations. Federal agencies such as the Health Resources and Services Administration may also be a data contributor, providing data to NACHC on behalf of their participating FQHC sites.
NACHC's data related work may include the participation of a project partner who participates in or supports data related projects by providing subject matter expertise, funding, vendor services, or other technical assistance.
Informatics Service
NACHC's informatics team provides technical assistance and analysis services to data partners. Technical assistance includes coaching data partners to improve the quality of their data collection and use. Analysis services include 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 predefined quality measure (e.g., the percent of screening-eligible patients who were screened). When combining datasets from multiple data partners, analysis can include mapping and normalizing disparate data structures and formats into one common data model and linking patients (see Linkage section).
Identification of Data from Partners
NACHC receives only de-identified data at this time; de-identified data is determined based on the HIPAA Safe Harbor definition where all 18 individual level PII and PHI identifiers are removed. While encounter dates and five-digit ZIP codes maybe included in datasets that are shared with NACH, encounter dates are either data-shifted or partially-share and five digit ZIP codes are shared for only highly populated geographic areas. This policy may be revised in the future should an appropriate use case arise.
Project Structure
NACHC organizes and tracks data-related work in projects. A project is established for each unique dataset that is housed by NACHC. When NACHC is performing many distinct analytic services on a given dataset, multiple projects may be established. Each project has 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 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.
Contracts and Regulatory
Governance Committee
NACHC's use of data is overseen by a governance committee. These data include data received from data partners and data accessed by NACHC staff. The governance committee includes between 8 and 10 members who represent NACHC leadership, analytic staff, data partners, and project partners who represent a broad range of perspectives and collective expertise in clinical care, informatics, data science, and population health. The chairperson of the governance committee is Julia Skapic and the vice chairperson is Andrea Price? Ron Yee?
Details of the governance committee membership and operations (e.g., scope, voting) are defined in a committee charter (need to link this).