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