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，这些系统中的大多数应用异构和专有的数据模型，这阻碍了科学工作。需要信息基础设施来实现国家和国际层面的医疗数据模型的交换和标准化-鉴于患者数据的复杂性，这是一项具有挑战性的任务：大约需要100.000个概念来描述患者的临床特征。本提案的总体目标是开发一个可持续的平台，优质医疗数据模型作为医学研究和常规医疗保健的信息基础设施。主要目标是进一步发展现有的医疗数据模型原型门户网站（www.medical-data-models.org），使之成为科学界的国际医疗数据模型库。明斯特大学图书馆在技术、内容和组织方面为该项目提供了可持续的高质量信息基础设施的专业知识。目前的原型系统由12500多个数据模型组成（据申请人所知，这是世界上同类系统中最大的系统，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策展来提高。内容将增加到20.000+数据模型，以涵盖欧洲医院的相关模型，并重点研究。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。应开发一套导出功能，使这些模型可供广大科学用户群体使用。基于国际标准的语义标注、专业的管理、用户反馈、灵活的搜索功能和格式转换器是该系统的重要服务。这一信息基础设施将适用开放存取和链接开放数据原则，科学界的预期收益是通过分享最佳做法、更标准化的带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，改进和加速医疗数据模型的设计，特别是临床研究中的电子数据采集（EDC）系统和常规患者护理中的电子健康记录（EHR）。目前的原型系统已成功地在几次国家和国际会议上作了介绍，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.