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Cross border semantic interoperability for learning health systems: The EHR4CR semantic resources and services.

Christel Daniel | David Ouagne | Eric Sadou | Nicolas Paris | Sajjad Hussain | Marie-Christine Jaulent | Dipak Kalra
Learning health systems | 2017

With the development of platforms enabling the integration and use of phenome, genome, and exposome data in the context of international research, data management challenges are increasing, and scalable solutions for cross border and cross domain semantic interoperability need to be developed. Reusing routinely collected clinical data, especially, requires computable portable phenotype algorithms running across different electronic health record (EHR) products and healthcare systems. We propose a framework for describing and comparing mediation platforms enabling cross border phenotype identification within federated EHRs. This framework was used to describe the experience gained during the EHR4CR project and the evaluation of the platform developed for accessing semantically equivalent data elements across 11 European participating EHR systems from 5 countries. Developers of semantic interoperability platforms are beginning to address a core set of requirements in order to reach the goal of developing cross border semantic integration of data.

Pubmed ID: 31245551

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This is a list of tools and resources that we have found mentioned in this publication.


PatientsLikeMe (tool)

RRID:SCR_003781

A for-profit health data-sharing platform that can transform the way patients manage their conditions, change the way industry conducts research and improve patient care. PatientsLikeMe aligns patient and industry interests through data-sharing partnerships. They work with trusted nonprofit, research and industry Partners who use this health data to improve products, services and care for patients. They take the information patients share about their experience with the disease and sell it to their partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. Except for the restricted personal information entered when registering for the site, participants should expect that every piece of information submitted (even if it is not currently displayed) may be shared with their partners and any member of PatientsLikeMe, including other patients. They do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because they believe in transparency, they tell members exactly what they do and do not do with their data. Patients have the opportunity to share both personal stories and health data about their conditions to help uncover great ideas and new knowledge. By sharing information on the site, they can put their disease experiences in context and find answers to the questions they have. Every partnership we develop must bring them closer to aligning patient and industry interests. Their end goal is improved patient care and quality of life.

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TRANSFoRm (tool)

RRID:SCR_003888

Project to develop a ''rapid learning healthcare system'' driven by advanced computational infrastructure that can improve both patient safety and the conduct and volume of clinical research in Europe. Three carefully chosen clinical ''use cases'' will drive, evaluate and validate the approach to the ICT (information and communications technology) challenges. The project will build on existing work at international level in clinical trial information models (BRIDG and PCROM), service-based approaches to semantic interoperability and data standards (ISO11179 and controlled vocabulary), data discovery, machine learning and electronic health records based on open standards (openEHR). TRANSFoRm will extend this work to interact with individual eHR systems as well as operate within the consultation itself providing both diagnostic support and support for the identification and follow up of subjects for research. The approach to system design will be modular and standards-based, providing services via a distributed architecture, and will be tightly linked with the user community. Four years of development and testing will end with a fifth year that will be dedicated to summative validation of the project deliverables in the Primary Care setting. In order to support patient safety in both clinical and research settings, significant ICT challenges need to be overcome in the areas of interoperability, common standards for data integration, data presentation, recording, scalability, and security.

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