Clinical Document Corpora -- Real Ones, Translated and Synthetic Substitutes, and Assorted Domain Proxies: A Survey of Diversity in Corpus Design, with Focus on German Text Data

TL;DR

This survey examines diverse corpus designs for German clinical text data, highlighting the scarcity of accessible real corpora and the use of proxies like translated or synthetic datasets, raising questions on their validity.

Contribution

It provides a comprehensive overview of existing German clinical corpora and proxies, analyzing their diversity and highlighting the challenges in data accessibility and validity.

Findings

Majority of German clinical corpora are inaccessible, with proxies used as substitutes.

Identified 92 corpus versions, including 46 real, 5 translated, and 6 synthetic corpora.

Proxies vary in closeness to real data, affecting their validity for research.

Abstract

We survey clinical document corpora, with focus on German textual data. Due to rigid data privacy legislation in Germany these resources, with only few exceptions, are stored in safe clinical data spaces and locked against clinic-external researchers. This situation stands in stark contrast with established workflows in the field of natural language processing where easy accessibility and reuse of data collections are common practice. Hence, alternative corpus designs have been examined to escape from this data poverty. Besides machine translation of English clinical datasets and the generation of synthetic corpora with fictitious clinical contents, several other types of domain proxies have come up as substitutes for clinical documents. Common instances of close proxies are medical journal publications, therapy guidelines, drug labels, etc., more distant proxies include online encyclopedic medical articles or medical contents from social media channels. After PRISM-conformant identification of 362 hits from 4 bibliographic systems, 78 relevant documents were finally selected for this review. They contained overall 92 different published versions of corpora from which 71 were truly unique in terms of their underlying document sets. Out of these, the majority were clinical corpora -- 46 real ones, 5 translated ones, and 6 synthetic ones. As to domain proxies, we identified 18 close and 17 distant ones. There is a clear divide between the large number of non-accessible authentic clinical German-language corpora and their publicly accessible substitutes: translated or synthetic, close or more distant proxies. So on first sight, the data bottleneck seems broken. Yet differences in genre-specific writing style, wording and medical domain expertise in this typological space are also obvious. This raises the question how valid alternative corpus designs really are.