This page houses the data governance policies and procedures developed by the NACHC data governance council. These policies and procedures can be applied to activities where data is involved but are primarily focused on data sharing that is defined as 1) NACHC receiving data from an external organization, or 2) NACHC sharing data with an external organization.
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Section 1: Governance Approach
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Amy Flowers (Unlicensed) Lets add the definitions here.
Data Governance Decision-Making
NACHC's organization-wide data management, privacy, and security practices and infrastructure is directed and managed by the information technology (IT) department.
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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 are defined in a charter.
Project Structure
NACHC engages in two primary types of projects that involve data: research and quality improvement.
Project Roles and Terminology
NACHC conducts data sharing with data partners and project partners.
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NACHC uses data either shared with NACHC by a data partner or collected by NACHC. When NACHC has received data from a data partner, NACHC acts as a data steward. Data stewardship is the collection of practices that ensure an organization’s data is accessible, usable, safe, and trusted.
Data Shared with NACHC
There are many types of data that may be shared with NACHC including UDS data, clinical data, and membership or other health center data.
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Outside of UDS, clinical data, and survey data, NACHC receives data from health center members and financial data. Over time, these other data sources will be incorporated into the broader NACHC data governance portfolio.
Requests for Data
NACHC receives requests for data that are either a part of a new or existing project. For clinical and UDS data, NACHC uses a central request process, referred to as a front door, to receive, review, and make determinations on requests from external organizations. Front Door instructions are available here. NACHC will only approve requests that benefit health centers and align with the NACHC vision.
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Data often results in work products which may include data quality results, analytic results, value sets, measure definitions, abstracts, presentations, manuscripts, and reports. Work products are owned by all members of the project team, including data partners and project partners.
Research
Amy Flowers (Unlicensed) lets work on this.
Quality Improvement
From quality improvement projects, work products are collectively owned by NACHC, the data partners who contributed data to the work product, and other project partners that supported the project. Once approved by all parties, these products may be used and disseminated widely so that many may benefit from what was learned.
Attribution
Historically, patients and health centers have not always been recognized for their contribution to work products. NACHC believes appropriate attribution of work products that recognizes health center contributions to NACHC work is essential to their mission. How and to whom work products are attributed is discussed with all project partners at the outset and as the project evolves to ensure that attribution of work projects is accurate and equitable.
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In addition to attribution, NACHC guarantees health centers the right to review work products resulting from projects that they participated on before those work products are finalized or publicly disseminated. Depending on the nature of the work product, health center review may be structure as opt-out or a required approval of work products.
Health Equity
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in Work Products
Recognizing that health equity is an organizational pillar, NACHC is committed to advancing health equity within work products. Historically, work products have excluded marginalized groups and failed to present data through a health equity lens. In NACHC work, marginalized groups refers to racial/ethnic minorities and individuals sexual orientation and gender identities. NACHC is committed to broadening inclusion of these groups in their work, adopting equitable data collection best practices, and generating work products that call attention to disparities without creating risk of reidentification. However, NACHC recognizes the tension in that the availability of data on these topics is limited and that NACHC may be limited in their ability to describe disparities by data availability.
When underlying data are biased, NACHC recognizes the risk that resulting models or analytic results may also be biased. NACHC prioritizes using datasets that have a representative amount of data from each group and annotating products accordingly to call attention to this important issue.
Identification of Health Centers in Work Products
In general, NACHC does not identify health centers in work products. There are some projects where identification of health centers is appropriate. When health centers need to be identified, NACHC solicits written approval to do so and engages health centers in a thorough review process.
For some work products that present health center level findings, there could be a risk to health centers to be re-identified by other means, especially with maps or health centers that see special populations. NACHC mitigates this concern with intentional and thorough review as well as small cell suppression.
Section 5: Data Security and Privacy
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Federal regulations require that research projects involving human subjects be reviewed by an Institutional Review Board (IRB). According to the FDA, an IRB is an appropriately constituted group that has been formally designated to review and monitor biomedical research involving human subjects. The IRB must approve or determine the project to be exempt or approved prior to the start of any research activities. The IRB cannot provide approval or determinations for research that has already been concluded.
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The federal regulations define both "research" and "human subject." Research is defined as a systematic investigation, including research development, testing, and evaluation, designed to develop or contribute to generalizable knowledge.Studies must be reviewed by an Institutional Review Board (IRB) only if both definitions apply. A project may involve data from human subjects, but not meet the definition of research and would, therefore, not require an IRB review. Research is defined by federal regulations at 45 CFR 46.102 (Protection of Human Subjects 2009), as "a systematic investigation including research development, testing, and evaluation, designed to develop or contribute to generalizable knowledge."
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