On MENDS: Governance Framework Facilitates Information Sharing for Chronic Disease Surveillance

Posted on February 12, 2024 by Emily Kraus

This entry is part 10 of 16 in the series Mar 2024

This article presents practical guidance for implementing a data-sharing governance framework of value to public health and healthcare organizations based on the experience of the Multi-State EHR-Based Network for Disease Surveillance (MENDS).

Read the article in JPHMP

Comprehensive, timely data are critical for informing policies and programs to reduce the burden of chronic disease. Although electronic health records (EHRs) can be a valuable source of surveillance data, the benefits are limited by the challenges of sharing data between public health and healthcare organizations. Data-sharing requirements and processes are complicated and demand a high level of trust between participating organizations.

In “Fostering Governance and Information Partnerships for Chronic Disease Surveillance: The Multi-State EHR-Based Network for Disease Surveillance,” we present practical guidance for implementing governance to facilitate data sharing between public health and healthcare organizations. Funded by Centers for Disease Control and Prevention (CDC), MENDS is a data modernization pilot project coordinated by National Association of Chronic Disease Directors (NACDD) to demonstrate the feasibility and value of using EHR data to estimate chronic disease risk and prevalence.

MENDS Governance Approach

In the absence of a legal reporting mandate, reporting on chronic disease is complex and limits health departments’ access to clinical data from EHR systems. The MENDS governance approach was developed by five partner sites that include data contributors and state and local health department data users in Illinois, Indiana, Louisiana, Texas, and Washington. MENDS aligns technical, statutory, and organizational requirements in a process to share EHR data with public health organizations. MENDS prioritizes security of data by using a distributed network design that allows data contributors to retain control of how their data are used and prevents the release of sensitive information. This intentional governance approach facilitates EHR data sharing through clear data-sharing processes that cultivate trust across data-sharing networks.

Composition of MENDS Governance Committee. Source: “Fostering Governance and Information Partnerships for Chronic Disease Surveillance: The Multi-State EHR-Based Network for Disease Surveillance.” JPHMP 30(2):244-254, March/April 2024

MENDS operates a multifunctional network governance committee. Each data contributor and user from every partner site has a primary voting member and an alternate voting member. Every new policy or procedure and any policy or procedural change must be discussed and approved by the governance committee. This two-member structure balances perspectives, addressing both partners’ priorities for governance. Committee members meet regularly to communicate and make timely and transparent decisions.

Key Lessons Learned and Strategies for Building Trust Among Partners

What are some lessons learned from MENDS that other healthcare and public health organizations can apply as they implement their own governance approach? What strategies help build trust within the governance framework to advance data sharing between data contributors and users for chronic disease surveillance? We have found that four strategies advance data-sharing efforts at a national network level: 1) Establish a single unified governance body 2) Ensure transparency, 3) Build flexibility into policy, and 4) Co-create governance.

Implementing an intentional governance approach, as exemplified by MENDS, can enhance partnerships while aligning organizations with a common vision for advancing population health. The co-creation of governance with partner sites—instead of unilaterally instituting policies and procedures—has nurtured relationships, cultivated knowledge, and culminated in a flexible structure that can be expanded to support surveillance on other public health topics. Read “Fostering Governance and Information Partnerships for Chronic Disease Surveillance: The Multi-State EHR-Based Network for Disease Surveillance” to learn about the MENDS pilot project, including challenges and lessons learned and the benefits of successful data sharing for improving chronic disease outcomes.

About the Author

Emily Kraus: Emily Kraus is an independent consultant with 15 years of experience working on research, quality improvement, and public health projects that leverage informatics solutions. Emily specializes in inclusive and participatory governance practices and has a PhD in Health Information Technology from the University of Colorado and a Masters in Public Health from Emory University.