Strategy Four

Evaluate Policy Landscape to Identify Gaps and Opportunities Relevant for Equitable Chronic Disease Surveillance Modernization

This strategy enables STLTs to identify and address legal and policy barriers to data sharing, allowing for improved data flow and more secure and effective use of chronic disease data across systems.

Read more about policy areas to consider for chronic disease surveillance modernization and examples of policy planning, analysis, implementation, and communication.

Policy Areas For Consideration

Data Standards and Interoperability

Policies for ensuring systems can communicate with one another and exchange high-quality, consistent data, including mandating national standards for chronic disease indicators and coding, requiring interoperability with various systems, and access to cloud-based surveillance systems. To learn more about CDC’s efforts towards interoperability by using the 1CDP Platform, click here.

Data Access and Sharing

Policies for enabling timely, comprehensive, and multi-source data collection, including real-time reporting requirements, streamlined data use agreements and sharing across sectors, and expansion toward linking a range of data sources. To learn more about federal efforts for a nationwide common data agreement, click here.

Workforce and Capacity

Policies for building and sustaining a workforce capable of managing modern surveillance systems, including personnel investment and support for staff retention.

Community Engagement

Policies for ensuring chronic disease data systems advance community trust, including mandating inclusion of community-based organizations in data interpretation and dissemination and promoting culturally appropriate and accessible communication of surveillance findings.

Data Privacy and Governance

Policies that protect data while enabling effective use for public health action, including promoting linkage while protecting private information, data stewardship standards for surveillance systems, and transparent protocols for how data are collected, used, and safeguarded.

Data Sovereignty

Policies that ensure communities–especially Tribal Nations and historically marginalized groups–maintain authority and self-determination over their data, including mandates to recognize data sovereignty and capacity building and ownership agreements for data sharing and publication involving sovereign nations and underrepresented communities

Policy Analysis and Communication

CDC Policy Analysis Tools

A set of tools which can be used to identify potential policy options to address an issue in chronic disease surveillance modernization. The Key Policy Analysis Questions resource provides questions that form a framework for your policy analysis. The Policy Analysis Table resource supports policy assessments against set criteria and comparisons of policy options

Guide to Communicating Policy Briefs in Public Health

A brief that provides technical teams responsible for policy development with tools for communicating information about their ideas, findings, and recommendations. Teams can use the guide to develop strategies that transform the way policy briefs are presented, enhancing their potential impact.

Public Health Communications Collaborative

The Public Health Communications Collaborative (PHCC): Offers communication tools, messaging, and trainings to support partnership-building and communications capacity building in public health organizations. 

PHII’s Immunization Information System One-Pager

A one-pager to walk IIS managers through how to engage in data modernization. This could be adapted and used as a resource for chronic disease practitioners to get their arms around what data modernization is.

PHII’s Data Modernization Initiative Planning Toolkit

The toolkit offers guidance on making a value case for data modernization projects, including a worksheet to develop a value case for a new surveillance system, example value cases, and guidance for developing data modernization messaging.

PHIG Implementation Centers

Implementation Centers provide holistic support to STLTs across People, Process, Governance, and Technology domains, including policy and legal support.  

Support for Data Collection and Sharing

The Public Health Law Center (PHLC)

PHLC offers a collection of resources focused on executing data use agreements (DUAs), essential for legal and ethical data sharing in public health.

 

  • Chronic Disease and Data Modernization Opportunities (and Safeguards) For Enhanced Public Health Data Collection: The Network for Public Health Law’s published a brief that provides guidance on ensuring appropriate data confidentiality safeguards as STLTs expand reporting requirements on non-communicable diseases.

  • Pathways to Yes: A legal framework for achieving data sharing for health, well-being, and equity: This guide, developed by the Network for Public Health Law, is designed for entities that want to share data but don’t know how or where to begin the process; as well as those that have run into obstacles in their data-sharing planning; including the “culture of ‘no’,” a factor that inhibits or prohibits data sharing based on an incomplete understanding of when and how laws (particularly health data privacy laws) permit data sharing.

  • Checklist of Information Needed to Address Proposed Data Collection, Access and Sharing: The Network for Public Health Law developed a checklist to assist public health practitioners in providing relevant information to resolve questions about proposed data collection, access, and sharing.

The Oregon Health Authority’s accountability metrics

This tool can be used to monitor and evaluate public health performance across various programs, serving as a tool for assessing progress, identifying areas for improvement, and informing policy decisions to enhance health outcomes 

Utah's Department of Health and Human Services standardized guidelines for data collection

Provides standardized guidelines for collecting demographic and social determinants of health (SDOH) data, including race, ethnicity, housing insecurity, language, and disability status. These standards aim to enhance the quality, comparability, and utility of health data. 

The Pacific Island Countries and Territories Non-Communicable Disease Legal Framework

A regional framework for legislative reforms to strengthen local and regional laws regulating non-communicable disease (NCD) risk factors, which could be used to address chronic disease surveillance policy and legal issues.

Local health department and community partner DUA example

A template to share individually identifiable health information between local health departments and community partners to improve care coordination and program evaluation. Example data sharing details are included. 

State health department DUA example

A generic template from West Virginia’s state privacy office on data sharing between the state and other entities. 

Data Governance

Public Health Informatics Institute’s (PHII)’s Data Governance for Public Health

PHII provides a comprehensive framework for STLTs to establish robust data governance structures, emphasizing clear roles, accountability, and transparency. Their resources support agencies in developing policies that ensure data quality, security, and effective use in decision-making processes. 

MENDS Governance Principles, Policies, and Processes

In MENDS, the governance infrastructure includes a decision-making body, policies, processes, and agreements that guide the network in collection, management, use, exchange, and release of public health surveillance information. The governance document reflects the network operations, active work (e.g., implementation of the Fast Healthcare Interoperability Resources (FHIR®) pilot) and guidance from members of the MENDS project team, the Governance Committee, emerging standards and industry best practices, and the needs of MENDS partner sites and public health.

The Health Care Systems Research Network Data Use Agreement Toolkit

This toolkit provides guidance for creating HIPAA-compliant DUAs, particularly when working with limited data sets that include geographic data. 

Fostering Governance and Information Partnerships for Chronic Disease Surveillance through MENDS

This article illustrates how implementing a governance framework for MENDS has created trust across the network and streamlined policy-making processes, while protecting data privacy and fostering shared infrastructure. 

Engage with Tribal Health

The Decolonize Data Toolkit

Written by the Urban Indian Health Institute, the toolkit empowers Urban Indian communities to reclaim data sovereignty by promoting culturally rigorous data collection and analysis practices. It offers tools and guidance for Indigenous-led research, emphasizing the importance of data for Native people, by Native people, and recognizing the inherent strength of Indigenous communities.

CSTE's Tribal Epidemiology Subcommittee

This subcommittee facilitates collaboration among epidemiologists working with American Indian and Alaska Native populations across state, local, territorial, and tribal health agencies. The subcommittee promotes data sharing, partnership, and capacity-building to support public health surveillance and data sovereignty. 

Indian Health Service IT Resource Hub

The resource hub provides comprehensive information on the modernization of health information technology within the Indian Health Service. It includes resources on electronic health records, technical features, and governance, aiming to enhance the delivery of health services to American Indians and Alaska Natives. 

Partnering with Native Nations in a Good Way Guide

Are you interested in collaborating with Native nations but don’t know where to start? This guide shares best practices for partnering with Native nations in a good way. Developing meaningful partnerships shows respect for sovereignty and elected leaders, and affirms Tribal sovereignty.

Data Governance Strategies for States and Tribal Nations

This fact sheet focuses on strategies states should take to support indigenous data sovereignty. Sound and effective governance strategies for data sharing among states and Tribal nations are integral for ensuring that trust is maintained, and data privacy and security risks are appropriately managed.1 The keys to establishing and maintaining trust are respecting Tribal data sovereignty and honoring the United States’ trust responsibility to Tribal nations.

CSTE's Tribal Epidemiology Toolkit

The Toolkit is meant to be a starting point for CSTE members to learn more about Tribes and public health in Indian Country. It is recommended to read the background sections—including Tribal Background, Cultural Humility, and Sovereignty & Health Authority—first. It is not a comprehensive guide to working with Tribes, but a place for members to begin their learning about and work with Tribes and TECs. Specific questions about Tribes in your jurisdictions are best addressed to those Tribes.

Toolkit Navigation

Foundational Concepts

Understand the core principles, key terminology, and initiatives grounding CSTE’s Chronic Disease Surveillance Data Modernization Strategic Plan

Implementation Actions and Strategies

Learn about the strategies and objectives outlined in CSTE’s Chronic Disease Surveillance Data Modernization Strategic Plan and explore tools for implementation

Implementation Stories

Draw from real-world examples of chronic disease surveillance across a range of jurisdictions with varying levels of experience and resources

Community and Collaboration

Identify and cultivate partnerships with other practitioners working on chronic disease surveillance modernization