A Case Study of a New Era in Disease Classification: An Investigation of the Socio-technical Requirements for Inclusive Standardization Development .

摘要

Until recently, the development and maintenance of the standard international disease classification for diagnostic, epidemiological and health management purposes has been handled by a closed group of experts with little input from other members of the medical community, interested organizations, or patient groups. The eleventh revision of the World Health Organization's International Classification of Diseases (ICD-11) represents an attempt to involve a much broader stakeholder group in the process of redesigning a standardized classification. Our research is an exploratory case study of this revision effort. We examine the socio-technical ecosystem of the ICD-11 project and produce a set of five recommendations for developing inclusive standardization systems. These recommendations are supported by an analysis of two additional projects in the health information and informatics domain, as well as a varied collection of literature. Our first recommendation implores system designers to consider technology-readiness and collaboration-readiness. We also advocate for the support of articulation and coordination work, and address the need for a distinct purpose and clearly defined process surrounding any introduced technology. Finally, we shed light on the need for incremental openness when attempting to involve a wide audience of stakeholders in the development process.