About

OCL's vision is to lower barriers to adopting standardized terminology, focusing on priority health issues in low-resource settings, to facilitate monitoring, evaluation, and performance improvement across the healthcare and public health systems. OCL will do this through a community-supported, standards-based approach.

Our idea is to create an open-source, cloud-based toolset for open and collaborative terminology, indicator, and core dataset management and development to accelerate convergence on best practices for data and data dictionary harmonization, information exchange, and reuse of analytics tools and approaches. This toolset will include (1) a web application to search, export, subscribe, and map to standardized terminology and indicators; (2) pre-populated terminology dictionaries and indicator registries, including a curated health terminology dataset from our primary academic partner and international standards such as ICD-10, SNOMED, WHO Indicator Registry, and US Meaningful Use Clinical Quality Indicators; (3) functionality to collaboratively create, export, and subscribe to subsets of terms and indicators that represent particular specialty areas (e.g. PEPFAR reporting requirements, mobile data collection form, or antenatal care core dataset); (4) design of an open API and interfaces with key community (e.g. CommCare and Magpi), facility (OpenMRS), district and national-level (DHIS2) platforms and terminology management systems (Apelon); and (5) support for communities of practice to advance terminology, indicator and tools development for specific domains, such as maternal-child health.

Standardized terminology is the fundamental enabler of interoperability- it gives meaning to data regardless of where, when, how, or by whom it was collected. Yet, barriers to leveraging standardized terminology to achieve meaningful information exchange remain prohibitively high, especially in low-resource settings where capacity is limited and vertical information siloes are common. This means that despite unprecedented amounts of data being available, we still cannot meaningfully track what services are being provided, at what level of quality, and what are the patient outcomes. The aim of this solution is to increase liquidity of data across organizational and technical boundaries by dramatically improving the usability and relevance of curated terminology resources. What is unique about our approach is:

• all tools and content (terminology, indicators, and data dictionaries) are free and open unless protected by a license by the standard developer or made private by a paid user;
• curation services provided by our academic partner ensure that new terminology is modeled consistently, mapped to reference terminologies, and non-duplicative;
• collaborative, community-supported process for creating and reviewing data dictionaries, which are collections of terms, indicators, and their relationships that represent a specific specialty area (e.g. minimum data set and reporting indicators for community antenatal screening);
• cloud-based approach eliminates the need for local installations in most use cases and reduces the complexity of adopting best practices for terminology adoption; and
• open API provides real-time electronic access to terminological resources and straightforward integration with independent software platforms.

This solution addresses the multiple levels of interconnectedness required for meaningful interoperability:

• Technical and semantic interoperability: The solution supports the capability to interoperate through access to terminology resources geared for the developing world and an open API providing access to all terminological resources;
• Process and institutional interoperability: The solution supports the actual interoperability (process) through real-time data dictionary translations and guidelines for utilization, and minimizes institutional barriers through communities of practice that foster shared learning and guide terminology development and evolution, tool reuse and deployment.

Elements of our model (online terminology search, collaborative terminology mapping, centralized curation) have been used by users in 50+ countries in the last year alone. We already have commitments from community, facility, district and national-level platform developers (e.g. CommCare, MedicMobile, OpenMRS, DHIS2), implementing organizations and governments (Government of Rwanda, Partners In Health), a global information exchange initiative (OpenHIE), mulitlaterals (WHO eHealth and Knowledge Management), and donors (USAID) to use this platform to support semantic interoperability goals.

Our plan consists of 2 phases:

1. (1) Developing the toolset and establishing a Community of Practice in one specialty area: The initial phase will last approximately 8 months and consists of infrastructure setup and software development, pre-populating key reference terminologies and indicators, API and interface design, and launching the Maternal-Child Health Community of Practice (CoP). Software will be released under an open-source license. The CoP will be launched with a workshop and a co-convening organization identified to provide ongoing leadership and guidance to the group.
2. (2) Validate the feasibility of the concept through applying the toolset to 3 partner projects: The validation phase will last 4 months and consists of working with 3 already identified partner projects using electronic data capture to provide maternal-health services in low-resource settings in India, Rwanda and Ghana. All relevant terminological resources, including data collection instruments, reports, and analytics tools, will be mapped using the proposed solution. The results will be used to facilitate information exchange between tools and across distinct levels of the health system in both individual and aggregate forms.

Success of this project means that (1) all terminological resources from relevant data collection instruments, reports, and analytics tools of the 3 project partners were represented and publicly available using the proposed solution; (2) data dictionaries were created to represent each specialty-specific information model used by the project partners; (3) the solution qualitatively improved the process of terminology mapping, proposing and reviewing new terms, and developing information models to represent specific specialty areas and is available for broader use; (4) project partners achieved specified health information exchange goals in part by leveraging the proposed solution; and (5) the Maternal-Child Health CoP is launched and a co-convener identified with a 2-year roadmap and objectives laid out.

Broader Applicability: While the proposed focus is on priority health issues in low-resource settings, the platform is applicable to standardized terminology and data harmonization efforts in all of health and development contexts globally.

Next Steps: Next steps include (1) establishing communities of practice around other key sub-specialties; (2) partnering with additional projects within the Maternal-Child Health CoP to provide a more comprehensive set of terminological resources; (3) expanding platform functionality to support advanced terminology services and a repository of paid and free analytics and reporting tools that consume data mapped to specific data dictionaries; (4) developing case studies around additional use cases of the developed solution and evaluating the comparative effectiveness of using this proposed solution to adopt standardized terminology to enable continuity of care within a particular specialty, beginning with maternal-child health.