A Governance Framework to Integrate Longitudinal Clinical and Community Data in a Distributed Data Network: The Childhood Obesity Data Initiative

Abstract

Context: Integrating longitudinal data from community-based organizations (eg, physical activity programs) with electronic health record information can improve capacity for childhood obesity research. Objective: A governance framework that protects individual privacy, accommodates organizational data stewardship requirements, and complies with laws and regulations was developed and implemented to support the harmonization of data from disparate clinical and community information systems. Participants and Setting: Through the Childhood Obesity Data Initiative (CODI), 5 Colorado-based organizations collaborated to expand an existing distributed health data network (DHDN) to include community-generated data and assemble longitudinal patient records for research. Design: A governance work group expanded an existing DHDN governance infrastructure with CODI-specific data use and exchange policies and procedures that were codified in a governance plan and a delegated-authority, multiparty, reciprocal agreement. Results: A CODI governance work group met from January 2019 to March 2020 to conceive an approach, develop documentation, and coordinate activities. Governance requirements were synthesized from the CODI use case, and a customized governance approach was constructed to address governance gaps in record linkage, a procedure to request data, and

Fostering Governance and Information Partnerships for Chronic Disease Surveillance: The Multi-State EHR-Based Network for Disease Surveillance

“…In the context of sharing EHR data, governance is a set of behaviors, policies, and standards that enables participants to exchange health information in a safe, secure, trustworthy, and reliable manner. [5][6][7][8][9][10] In an information-sharing partnership between health care and DOHs, governance defines the requirements of data-contributing organizations within a framework that is responsive to the statutes that regulate data sharing and the needs of data users. In parallel, governance supports developing a community of trust.…”

“…Furthermore, because each governance implementation is unique, there is no prescribed governance approach, and published descriptions of public health governance implementation are limited. 9,15 A 2014 systematic review defined 20 technical, system, political, legal, and ethical barriers that hinder data sharing that can be resolved through governance and trust building. 16 One key recommendation stemming from the broader domain of health information exchange is the need for a governance body and layers therein to address organizational, network, and data governance issues.…”

“…Although governance for data sharing is a topic of great interest to DOHs,14 the public health governance literature is limited and focuses mostly on governance requirements. Furthermore, because each governance implementation is unique, there is no prescribed governance approach, and published descriptions of public health governance implementation are limited 9,15. A 2014 systematic review defined 20 technical, system, political, legal, and ethical barriers that hinder data sharing that can be resolved through governance and trust building 16.…”