HiGHmed – An Open Platform Approach to Enhance Care and Research across Institutional Boundaries

TLDR

The article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. HiGHmed brings together 24 partners from academia and industry to improve care provision, biomedical research, and epidemiology, and outlines the open platform approach’s principles, design goals, and the roles of standards such as IHE XDS, openEHR, SNOMED CT, and HL7 FHIR. The platform establishes a shared information governance framework, data integration centers, and a scalable open platform architecture that integrates seven medical informatics curricula, adapts governance for development and networking phases, and addresses organizational, technical, and semantic interoperability through standards like IHE XDS, openEHR, SNOMED CT, and HL7 FHIR. The shared governance framework enables semantic interoperability and supports three use cases—oncology, cardiology, and infection control—highlighting challenges in data protection, privacy, and security, while emphasizing the need for clinical leadership support, sustained organizational commitment, and ongoing attention to data quality, privacy regulations, and patient consent.

Abstract

This article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. HiGHmed brings together 24 partners from academia and industry, aiming at improvements in care provision, biomedical research and epidemiology. By establishing a shared information governance framework, data integration centers and an open platform architecture in cooperation with independent healthcare providers, the meaningful reuse of data will be facilitated. Complementary, HiGHmed integrates a total of seven Medical Informatics curricula to develop collaborative structures and processes to train medical informatics professionals, physicians and researchers in new forms of data analytics.We describe governance structures and policies that have proven effective during the conceptual phase. These were further adapted to take into account the specific needs of the development and networking phase, such as roll-out, carerelated aspects and our focus on curricula development in Medical Inform atics.To address the challenges of organizational, technical and semantic interoperability, a concept for a scalable platform architecture, the HiGHmed Platform, was developed. We outline the basic principles and design goals of the open platform approach as well as the roles of standards and specifications such as IHE XDS, openEHR, SNOMED CT and HL7 FHIR. A shared governance framework provides the semantic artifacts which are needed to establish semantic interoperability.Three use cases in the fields of oncology, cardiology and infection control will demonstrate the capabilities of the HiGHmed approach. Each of the use cases entails diverse challenges in terms of data protection, privacy and security, including clinical use of genome sequencing data (oncology), continuous longitudinal monitoring of physical activity (cardiology) and cross-site analysis of patient movement data (infection control).Besides the need for a shared governance framework and a technical infrastructure, backing from clinical leaders is a crucial factor. Moreover, firm and sustainable commitment by participating organizations to collaborate in further development of their information system architectures is needed. Other challenges including topics such as data quality, privacy regulations, and patient consent will be addressed throughout the project.