Supporting UK-wide e-clinical trials and studies

As clinical trials and epidemiological studies become increasingly large, covering wider (national) geographical areas and involving ever broader populations, the need to provide an information management infrastructure that can support such endeavours is essential. A wealth of clinical data now exists at varying levels of care (primary care, secondary care, etc.). Simple, secure access to such data would greatly benefit the key processes involved in clinical trials and epidemiological studies: patient recruitment, data collection and study management. The Grid paradigm provides one model for seamless access to such data and support of these processes. The VOTES project (Virtual Organisations for Trials and Epidemiological Studies) is a collaboration between several UK institutions to implement a generic framework that effectively leverages the available health-care information across the UK to support more efficient gathering and processing of trial information. The structure of the information available in the health-care domain in the UK itself varies broadly in-line with the national boundaries of the constituent states (England, Scotland, Wales and Northern Ireland). Technologies must address these political boundaries and the impact these boundaries have in terms of for example, information governance, policies, and of course large-scale heterogeneous distribution of the data sets themselves. This paper outlines the methodology in implementing the framework between three specific data sources that serve as useful case studies: Scottish data from the Scottish Care Information (SCI) Store data repository, data on the General Practice Research Database (GPRD) diabetes trial at Imperial College London, and benign prostate hypoplasia (BPH) data from the University of Nottingham. The design, implementation and wider research issues are discussed along with the technological challenges encountered in the project in the application of Grid technologies

Pick-n-mix approaches to technology supply : XML as a standard “glue” linking universalised locals

We report on our experiences in a participatory design project to develop ICTs in a hospital ward working with deliberate self-harm patients. This project involves the creation and constant re-creation of sociotechnical ensembles in which XML-related technologies may come to play vital roles. The importance of these technologies arises from the aim underlying the project of creating systems that are shaped in locally meaningful ways but reach beyond their immediate context to gain wider importance. We argue that XML is well placed to play the role of "glue" that binds multiple such systems together. We analyse the implications of localised systems development for technology supply and argue that inscriptions that are evident in XML-related standards are and will be very important for the uptake of XML technologies

Design and implementation of a federated health record server

This paper describes the practical implementation of a federated health record serverbased on a generic and comprehensive public domain architecture and deployed in alive clinical setting.The authors, working at the Centre for Health Informatics and MultiprofessionalEducation (University College London), have built up over a decade of experiencewithin Europe on the requirements and information models that are needed to underpincomprehensive multi-professional electronic health records. This work has involvedcollaboration with a wide range of healthcare and informatics organisations and partnersin the healthcare computing industry across Europe though the EU Health Telematicsprojects GEHR, Synapses, EHCR-SupA, SynEx and Medicate. The resultingarchitecture models have influenced recent European standards in this area, such asCEN TC/251 ENV 13606. UCL has now designed and built a federated health recordserver based on these models which is now running in the Department ofCardiovascular Medicine at the Whittington Hospital in north London. A new EC FifthFramework project, 6WINIT, is enabling new and innovative IPv6 and wirelesstechnology solutions to be added to this work.The north London clinical demonstrator site has provided the solid basis from which toestablish "proof of concept" verification of the design approach, and a valuableopportunity to install, test and evaluate the results of the component engineeringundertaken during the EC funded projects

System hazards in managing laboratory test requests and results in primary care: medical protection database analysis and conceptual model

Objectives To analyse a medical protection organisation's database to identify hazards related to general practice systems for ordering laboratory tests, managing test results and communicating test result outcomes to patients. To integrate these data with other published evidence sources to inform design of a systems-based conceptual model of related hazards. Design A retrospective database analysis. Setting General practices in the UK and Ireland. Participants 778 UK and Ireland general practices participating in a medical protection organisation's clinical risk self-assessment (CRSA) programme from January 2008 to December 2014. Main outcome measures Proportion of practices with system risks; categorisation of identified hazards; most frequently occurring hazards; development of a conceptual model of hazards; and potential impacts on health, well-being and organisational performance. Results CRSA visits were undertaken to 778 UK and Ireland general practices of which a range of systems hazards were recorded across the laboratory test ordering and results management systems in 647 practices (83.2%). A total of 45 discrete hazard categories were identified with a mean of 3.6 per practice (SD=1.94). The most frequently occurring hazard was the inadequate process for matching test requests and results received (n=350, 54.1%). Of the 1604 instances where hazards were recorded, the most frequent was at the ‘postanalytical test stage’ (n=702, 43.8%), followed closely by ‘communication outcomes issues’ (n=628, 39.1%). Conclusions Based on arguably the largest data set currently available on the subject matter, our study findings shed new light on the scale and nature of hazards related to test results handling systems, which can inform future efforts to research and improve the design and reliability of these systems

Analyzing recommender systems for health promotion using a multidisciplinary taxonomy: A scoping review

Background: Recommender systems are information retrieval systems that provide users with relevant items (e.g., through messages). Despite their extensive use in the e-commerce and leisure domains, their application in healthcare is still in its infancy. These systems may be used to create tailored health interventions, thus reducing the cost of healthcare and fostering a healthier lifestyle in the population. Objective: This paper identifies, categorizes, and analyzes the existing knowledge in terms of the literature published over the past 10 years on the use of health recommender systems for patient interventions. The aim of this study is to understand the scientific evidence generated about health recommender systems, to identify any gaps in this field to achieve the United Nations Sustainable Development Goal 3 (SDG3) (namely, “Ensure healthy lives and promote well-being for all at all ages”), and to suggest possible reasons for these gaps as well as to propose some solutions. Methods: We conducted a scoping review, which consisted of a keyword search of the literature related to health recommender systems for patients in the following databases: ScienceDirect, PsycInfo, Association for Computing Machinery, IEEExplore, and Pubmed. Further, we limited our search to consider only English-lan-guage journal articles published in the last 10 years. The reviewing process comprised three researchers who filtered the results simultaneously. The quantitative synthesis was conducted in parallel by two researchers, who classified each paper in terms of four aspects—the domain, the methodological and procedural aspects, the health promotion theoretical factors and behavior change theories, and the technical aspects—using a new multidisciplinary taxonomy. Results: Nineteen papers met the inclusion criteria and were included in the data analysis, for which thirty-three features were assessed. The nine features associated with the health promotion theoretical factors and behavior change theories were not observed in any of the selected studies, did not use principles of tailoring, and did not assess (cost)-effectiveness. Discussion: Health recommender systems may be further improved by using relevant behavior change strategies and by implementing essential characteristics of tailored interventions. In addition, many of the features required to assess each of the domain aspects, the methodological and procedural aspects, and technical aspects were not reported in the studies. Conclusions: The studies analyzed presented few evidence in support of the positive effects of using health recommender systems in terms of cost-effectiveness and patient health outcomes. This is why future studies should ensure that all the proposed features are covered in our multidisciplinary taxonomy, including integration with electronic health records and the incorporation of health promotion theoretical factors and behavior change theories. This will render those studies more useful for policymakers since they will cover all aspects needed to determine their impact toward meeting SDG3.European Union's Horizon 2020 No 68112

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