Report on the EHCR (Deliverable 26.2)

This deliverable is the second for Workpackage 26. The first, submitted after Month 12, summarised the areas of research that the partners had identified as being relevant to the semantic indexing of the EHR. This second one reports progress on the key threads of work identified by the partners during the project to contribute towards semantically interoperable and processable EHRs. This report provides a set of short summaries on key topics that have emerged as important, and to which the partners are able to make strong contributions. Some of these are also being extended via two new EU Framework 6 proposals that include WP26 partners: this is also a measure of the success of this Network of Excellence

Report on the EHCR (Deliverable 26.1)

The challenge of richly interpreting electronic health information, in order to populate EHR instances with suitable terms, to provide decision support in the care of individuals, to identify suitable patients for teaching or clinical trials recruitment, and to mine populations of records for public health or to discover new medical knowledge, all require that the heterogeneous clinical entry instances within EHR repositories can be systematically analysed and interpreted. Achieving this requires the combination and co-operation of many different health informatics tools and technologies, underpinned by shared representations of clinical concepts and inferencing formalisms. Much of this work is at the level of R&D, and is well represented across the Semantic Mining consortium. The challenge of WP26 is to build up a vision of the ways in which these historically independent threads of health informatics research can collaborate, and uncover the research challenges that are needed in order to deliver good demonstrations of semantically indexed and richly analysable EHRs. The partners have begun WP26 by acquiring a better knowledge of each other’s areas of endeavour, and are beginning to steer their research interests towards future areas of collaboration

Electronic health record standards

Objectives: This paper seeks to provide an overview of the initiatives that are proceeding internationally to develop standards for the exchange of electronic health record (EHR) information between EHR systems.Methods: The paper reviews the clinical and ethico-legal requirements and research background on the representation and communication of EHR data, which primarily originates from Europe through a series of EU funded Health Telematics projects over the post thirteen years. The major concept that underpin the information models and knowledge models are summarised. These provide the requirements and the best evidential basis from which HER communications standards should be developed.Results. The main focus of EHR communications standardisation is presently occurring at a European level, through the Committee for European Normalisation (CEN). The major constructs of the CEN 13606 model ate outlined. Complementary activity is taking place in ISO and in HL7, and some of these efforts are also summarised.Conclusior: There is a strong prospect that a generic EHR interoperability standard can be agreed at a European (and hopefully international) level. Parts of the challenge of EHR i interoperability cannot yet he standardised, because good solutions to the preservation of clinical meaning across heterogeneous systems remain to be explored. Further research and empirical projects are therefore also needed

EHR requirements

Published requirements for the EHR are principally available via ISO 18308. They are statements defining the generic features necessary in any Electronic Health Record for it to be communicable and complete, retain integrity across systems, countries and time, and be a useful and effective ethico-legal record of care. Examples of requirements are provided in four themes: -EHR functional requirements; Ethical, legal, and security requirements; Clinical requirements; Technical requirements. The main logical building blocks of an EHR are described using the terminology of CEN TC251 ENV13606. Examples are given of the placement of attributes to satisfy contextual and other requirements at the level of specific building blocks. A worked example of the use of the building blocks is given for the request-report cycle for an imaging investigation

Ethical issues of electronic patient data and informatics in clinical trial settings

The field of cancer bio-informatics unites the disciplines of scientific and clinical research withclinical practice and the treatment of individual patients. There is a need to study patients andsometimes their families, over many decades, to follow disease progress and long-term outcomes.This may require research teams to access the routinely-collected health data from generalpractice and hospital health records, prior to and after the cancer diagnosis is made. This clinicalinformation will increasingly include data provided by patients or acquired from them throughwearable devices that can monitor or deliver treatment, and data acquired from genetic relativesof the patient.All of these data, whether explicitly collected for the purpose of a clinical study, or routinelycollected as part of a patient?s life-time healthcare journey, are personal health data. There areethical and legal requirements to manage these data with care. This chapter explores the ethicalrequirements for collecting, holding, analysing and sharing personal health data, and thelegislation covering such activities

Description and Experience of the Clinical Testbeds

This deliverable describes the up-to-date technical environment at three clinical testbed demonstrator sites of the 6WINIT Project, including the adapted clinical applications, project components and network transition technologies in use at these sites after 18 months of the Project. It also provides an interim description of early experiences with deployment and usage of these applications, components and technologies, and their clinical service impact

Consolidated List of Requirements

This document is a consolidated catalogue of requirements for the Electronic Health Care Record (EHCR) and Electronic Health Care Record Architecture (EHCRA), gleaned largely from work done in the EU Framework III and IV programmes and CEN, but also including input from other sources including world-wide standardisation initiatives. The document brings together the relevant work done into a classified inventory of requirements to inform the on-going standardisation process as well as act as a guide to future implementation of EHCRA-based systems. It is meant as a contribution both to understanding of the standard and to the work that is being considered to improve the standard. Major features include the classification into issues affecting the Health Care Record, the EHCR, EHCR processing, EHCR interchange and the sharing of health care information and EHCR systems. The principal information sources are described briefly. It is offered as documentation that is complementary to the four documents of the ENV 13606 Parts I-IV produced by CEN Pts 26,27,28,29. The requirements identified and classified in this deliverable are referenced in other deliverables

Information architecture for a federated health record server

This paper describes the information models that have been used to implement a federated health record server and to deploy it in a live clinical setting. The authors, working at the Centre for Health Informatics and Multiprofessional Education (University College London), have built up over a decade of experience within Europe on the requirements and information models that are needed to underpin comprehensive multi-professional electronic health records. This work has involved collaboration with a wide range of health care and informatics organisations and partners in the healthcare computing industry across Europe though the EU Health Telematics projects GEHR, Synapses, EHCR-SupA, SynEx and Medicate. The resulting architecture models have fed into recent European standardisation work in this area, such as CEN TC/251 ENV 13606. UCL has implemented a federated health record server based on these models which is now running in the Department of Cardiovascular Medicine at the Whittington Hospital in North London. The information models described in this paper reflect a refinement based on this implementation experience