This proposal is being submitted on behalf of the Open Concept Lab community, a consortium of partners being represented, for this proposal,
by Apelon, Cooper/Smith , OpenMRS, and Regenstrief Institute. The Open Concept Lab (OCL) is an existing “global good” consisting of an
open-source terminology management system (distributed under MPLv2 with a healthcare disclaimer) to help collaboratively manage, publish
and use metadata in the cloud alongside the global community. Imagine GitHub for indicators, terminology, and metadata-- a one-stop shop to
access international standards, create and publish your own definitions, or browse country and global indicators with mappings to the diagnoses,
procedures, or other data definitions used to calculate them.
We propose to use this award to achieve two objectives:
Implement a sustainable governance model for the OCL software and community, establish ties to new software development
resources, and strengthen community engagement. These are important steps to prepare for significant expected growth over
the next two years to ensure mechanisms are in place to concretize community ownership, sustain development, and support
our users.
Make significant improvements to OCL’s usability and functionality specifically for governments. Governments are a key
stakeholder of OCL and these improvements will allow government administrators and partners to more easily perform
collaborative management and publication of nationally endorsed information standards, adopt standards across a wide range
of use cases and levels of expertise, harmonize data collection and reporting approaches across partners, and enable
electronic information exchange. Government use cases and requirements will be informed by the Kuunika Project in Malawi
with Cooper/Smith as a technical partner and the Ethiopia Data Use Partnership, both which are actively advancing their
terminology management strategies.
Most countries struggle with the quantity and fragmentation of data collection tools and reporting requirements within the health sector. For
example, at the facility-level in Malawi, health workers (HWs) record patient transactions and manually aggregate data into government
registers and reports, as well as those required by donors. The sheer volume of data that HWs must manage and report does not only place an
excessive burden on an already stretched workforce, but also results in poor data quality and sub-optimal reporting rates. Often, the requested
information is duplicative as the data elements are not standardized. Managers and policy makers struggle to identify the right data and
reconcile discrepancies across systems and reporting streams, leading to insufficient data use. A mapping of the data elements and indicators
used across data collection forms, registers, and reports would allow governments to harmonize definitions, reducing duplicative reporting and
enhancing data use.
By adopting sharable definitions for data and indicators, we empower stakeholders to exchange data effectively and make interoperability
possible. For data use to be institutionalized among low and middle income countries (LMICs), there are several key obstacles that must be
overcome. Among those obstacles is the limited access to already-defined indicators and terminologies, such as reference terminologies (WHO
ICD-10, LOINC, HL7) or country-defined content such as Health Management Information System (HMIS) indicators or subsets representing
domain-specific priorities. A second key obstacle is the absence of appropriate and accessible tools to support the metadata management and
publication needs of resource-constrained governments or organizations working in the development sector. While the initial use cases for OCL
were focused on health, there is every reason for other sectors to leverage the platform.
Like other global goods, OCL is both open-source software and a community. However, OCL has two other distinct elements: a hosted web
presence and content. The hosted web presence is a global instance called the OpenHIE Metadata Clearinghouse that is a central service for
organizations to publish public metadata--such as indicator definitions or clinical concepts--for their stakeholders and the international
development community. Stakeholders may still implement a local instance of OCL to supplement the hosted service. The content is a growing
set of reference vocabularies, country and donor indicators, and other definitions from donors, countries, universities, and implementers
throughout the world.