Medical Data Models

MDM-Portal (Medical Data-Models) is a meta-data registry for creating, analysing, sharing and reusing medical forms, developed by the Institute of Medical Informatics, Heidelberg University Hospital in Germany. see also https://doi.org/10.1055/s-0044-1786839 Electronic forms for documentation of patient data are an integral part within the workflow of physicians. A huge amount of data is collected either through routine documentation forms (EHRs) for electronic health records or as case report forms (CRFs) for clinical trials. This raises major scientific challenges for health care, since different health information systems are not necessarily compatible with each other and thus information exchange of structured data is hampered. Software vendors provide a variety of individual documentation forms according to their standard contracts, which function as isolated applications. Furthermore, free availability of those forms is rarely the case. Currently less than 5 % of medical forms are freely accessible. Based on this lack of transparency harmonization of data models in health care is extremely cumbersome, thus work and know-how of completed clinical trials and routine documentation in hospitals are hard to be re-used. The MDM-Portal serves as an infrastructure for academic (non-commercial) medical research to contribute a solution to this problem. It already contains more than 25,000 system-independent forms (CDISC ODM Format, www.cdisc.org, Operational Data Model) with more than 600,000 data-elements. This enables researchers to view, discuss, download and export forms in most common technical formats such as PDF, CSV, Excel, SQL, SPSS, R, etc. A growing user community will lead to a growing database of medical forms. In this matter, we would like to encourage all medical researchers to register and add forms and discuss existing forms.

MDM-Portal（Medical Data-Models，医学数据模型）是由德国海德堡大学医院医学信息学研究所开发的元数据注册库，用于创建、分析、共享与复用医疗表单。详见：https://doi.org/10.1055/s-0044-1786839

面向患者数据文档的电子表单，已是医师工作流程中不可或缺的组成部分。海量医疗数据既可通过面向电子健康记录（Electronic Health Records, EHRs）的常规文档表单收集，也可通过临床试验的病例报告表（Case Report Forms, CRFs）采集。这给医疗健康领域带来了重大科学挑战：不同健康信息系统未必彼此兼容，致使结构化数据的信息交换受到阻碍。

软件厂商会依据各自的标准合同提供多种个性化文档表单，这些表单往往作为孤立应用运行。此外，此类表单极少实现免费公开。目前仅有不到5%的医疗表单可免费获取。

鉴于这种透明度缺失的现状，医疗健康领域的数据模型统一工作极为繁琐，因此医院中已完成的临床试验与常规文档的工作成果及专业知识难以被复用。

MDM-Portal作为面向学术（非商业）医学研究的基础设施，旨在为解决这一难题提供可行方案。

该平台目前已收录超过25000个跨系统表单，采用CDISC ODM格式（www.cdisc.org，操作数据模型(Operational Data Model)），涵盖超过60万个数据元素。这使得研究人员能够以PDF、CSV、Excel、SQL、SPSS、R等主流技术格式查看、讨论、下载并导出表单。

随着用户群体不断壮大，医疗表单数据库也将持续扩容。在此，我们呼吁所有医学研究人员注册平台、提交表单并参与现有表单的讨论。

搜集汇总

背景与挑战

背景概述

MDM-Portal（Medical Data-Models）是由德国海德堡大学医院医学信息学研究所开发的元数据注册系统，旨在通过提供超过25,000个系统无关的医疗表单（含60万数据元素），促进医疗表单的创建、分析、共享和重用，以解决医疗数据模型不兼容和透明度不足的问题，支持学术研究。