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

Contributions to the mixed-alkali effect in molecular dynamics simulations of alkali silicate glasses

The mixed-alkali effect on the cation dynamics in silicate glasses is analyzed via molecular dynamics simulations. Observations suggest a description of the dynamics in terms of stable sites mostly specific to one ionic species. As main contributions to the mixed--alkali slowdown longer residence times and an increased probability of correlated backjumps are identified. The slowdown is related to the limited accessibility of foreign sites. The mismatch experienced in a foreign site is stronger and more retarding for the larger ions, the smaller ions can be temporarily accommodated. Also correlations between unlike as well as like cations are demonstrated that support cooperative behavior.Comment: 10 pages, 12 figures, 1 table, revtex4, submitted to Phys. Rev.

London SynEx Demonstrator Site: Impact Assessment Report

The key ingredients of the SynEx-UCL software components are: 1. A comprehensive and federated electronic healthcare record that can be used to reference or to store all of the necessary healthcare information acquired from a diverse range of clinical databases and patient-held devices. 2. A directory service component to provide a core persons demographic database to search for and authenticate staff users of the system and to anchor patient identification and connection to their federated healthcare record. 3. A clinical record schema management tool (Object Dictionary Client) that enables clinicians or engineers to define and export the data sets mapping to individual feeder systems. 4. An expansible set of clinical management algorithms that provide prompts to the patient or clinician to assist in the management of patient care. CHIME has built up over a decade of experience within Europe on the requirements and information models that are needed to underpin comprehensive multiprofessional electronic healthcare records. The resulting architecture models have influenced new European standards in this area, and CHIME has designed and built prototype EHCR components based on these models. The demonstrator systems described here utilise a directory service and object-oriented engineering approach, and support the secure, mobile and distributed access to federated healthcare records via web-based services. The design and implementation of these software components has been founded on a thorough analysis of the clinical, technical and ethico-legal requirements for comprehensive EHCR systems, published through previous project deliverables and in future planned papers. The clinical demonstrator site described in this report has provided the solid basis from which to establish "proof of concept" verification of the design approach, and a valuable opportunity to install, test and evaluate the results of the component engineering undertaken during the EC funded project. Inevitably, a number of practical implementation and deployment obstacles have been overcome through this journey, each of those having contributed to the time taken to deliver the components but also to the richness of the end products. UCL is fortunate that the Whittington Hospital, and the department of cardiovascular medicine in particular, is committed to a long-term vision built around this work. That vision, outlined within this report, is shared by the Camden and Islington Health Authority and by many other purchaser and provider organisations in the area, and by a number of industrial parties. They are collectively determined to support the Demonstrator Site as an ongoing project well beyond the life of the EC SynEx Project. This report, although a final report as far as the EC project is concerned, is really a description of the first phase in establishing a centre of healthcare excellence. New EC Fifth Framework project funding has already been approved to enable new and innovative technology solutions to be added to the work already established in north London

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

The CHIME graduate programme in health informatics

In 1999 University College London inaugurated a programme of graduate part-time Health Informatics courses to support the UK National Health Service?s Information for Health strategy. The programme has attracted students from across the UK and abroad, with a diverse range of backgrounds and skills and has proved a challenging and rewarding experience for students and tutors alike. The modular programme aims to provide a thorough grounding in the theory and practice of Health Informatics and addresses important application areas. The guiding principle is that Health Informatics graduates need to understand computers and programming but that, since the majority are not going to become programmers, programming methods should not dominate the curriculum.In the taught phase of the programme students attend college for 3 days a month and complete an assignment each month, based on home study. Students may graduate with a certificate or diploma, or go on to tackle a dissertation leading to an MSc. Research projects have included a patient record system based on speech input, a mathematical model for illustrating to patients the risks associated with smoking, an analysis of Trust staff's preparedness for Information for Health and a patient information leaflet giving advice about drug related information on the Web. As we move towards our fifth intake of students, we are in the process of evaluating our programme and carrying out a follow up study of our graduates? subsequent career pathways

Security and confidentiality approach for the Clinical E-Science Framework (CLEF)

Objectives: CLEF is an MRC sponsored project in the E-Science programme that aims to establish methodologies and a technical infrastructure for the next generation of integrated clinical and bioscience research. Methods: The heart of the CLEF approach to this challenge is to design and develop a pseudonymised repository of histories of cancer patients that can be accessed by researchers. Robust mechanisms and policies have been developed to ensure that patient privacy and confidentiality are preserved while delivering a repository of such medically rich information for the purposes of scientific research. Results: This paper summarises the overall approach adopted by CLEF to meet data protection requirements, including the data flows, pseudonymisation measures and additional monitoring policies that are currently being developed. Conclusion: Once evaluated, it is hoped that the CLEF approach can serve as a model for other distributed electronic health record repositories to be accessed for research