Portal of Medical Data Models

高效的信息系统是医学研究成功的关键因素。目前，这些系统大多采用异构性和专有的数据模型，这阻碍了科学工作。对信息基础设施的需求是能够在国家和国际层面上交换和标准化医疗数据模型--考虑到患者数据的复杂性，这是一项具有挑战性的任务：需要大约100.000个概念来描述患者的临床属性。这项提议的总体目标是开发一个可持续的高质量医疗数据模型平台，作为医学研究和常规医疗保健的信息基础设施。主要目标是进一步将现有的医疗数据模型原型门户网站(www.Medical-Data-Models.org)发展成为科学界的国际医疗数据模型储存库。明斯特大学图书馆为该项目提供了技术、内容和组织方面的可持续、高质量信息基础设施方面的专业知识。目前的原型系统由12.500多个数据模型组成(据申请人所知，这是世界上最大的同类系统，DFG门户网站和MERIL数据库中没有类似的系统)。这些模型的质量应通过本项目内的专家管理来提高。内容应增加到20.000+数据模型，以涵盖欧洲医院的相关模型，并有研究重点。将利用肿瘤学领域现有的国际合作来生成高质量的内容。将开发和维护一套新的信息学工具来生成和处理医学数据模型。应开发一套输出功能，以使这些模型可供广泛的科学用户群体使用。基于国际标准的语义标注、专业精选、用户反馈、灵活的搜索功能和格式转换是该系统的重要服务。开放获取和关联的开放数据原则将应用于这一信息基础设施。通过共享最佳实践、更标准化的具有语义注释的数据模型以及信息系统之间更好的信息交换，尤其是临床研究中的电子数据捕获(EDC)系统和常规患者护理中的电子健康记录(EHR)，科学界有望获得改进和加速设计医疗数据模型。目前的原型系统已在几次国内和国际会议上成功介绍，有证据表明科学界有强烈的需求。

Efficient information systems are a key success factor for medical research. Currently, most of these systems apply heterogeneous and proprietary data models, which impede scientifc work. There is a demand for information infrastructures to enable exchange and standardization of medical data models on a national and international level - a challenging task given the complexity of patient data: approximately 100.000 concepts are required to describe the clinical properties of patients.The overall objective of this proposal is to develop a sustainable platform for high-quality medical data models as an information infrastructure for medical research and routine healthcare. The main goal is to further develop the existing prototype portal of medical data models (www.medical-data-models.org) into an international repository of medical data models for the scientific community. The University Library of Münster contributes to this project expertise for sustainable, high-quality information infrastructures regarding technical, contents and organisational aspects.The current prototype system consists of 12.500+ data models (according to the applicant’s knowledge the largest system of its kind world-wide, there is no similar system available in the DFG portal and MERIL database). Quality of those models shall be improved by expert curation within this project. Contents shall be increased to 20.000+ data models to cover relevant models from European hospitals with a research focus. Existing international collaborations in the field of oncology will be leveraged to generate high-quality contents.A set of new informatics tools will be developed and maintained to generate and process medical data models. A set of export functions shall be developed to make those models usable for a wide scientific user group. Semantic annotation based upon international standards, professional curation, user feedback, flexible search functions and format converters are important services of this system. Open access and linked open data principles will by applied for this information infrastructure.Expected benefits for the scientific community are improved and accelerated design of medical data models by sharing best practice, more standardized data models with semantic annotation and better information exchange between information systems, in particular Electronic Data Capture (EDC) systems in clinical research and Electronic Health Records (EHR) in routine patient care. The current prototype system was presented successfully in several national and international conferences and there is evidence for a strong demand by the scientific community.