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

Towards an interoperable healthcare information infrastructure - working from the bottom up

Historically, the healthcare system has not made effective use of information technology. On the face of things, it would seem to provide a natural and richly varied domain in which to target benefit from IT solutions. But history shows that it is one of the most difficult domains in which to bring them to fruition. This paper provides an overview of the changing context and information requirements of healthcare that help to explain these characteristics.First and foremost, the disciplines and professions that healthcare encompasses have immense complexity and diversity to deal with, in structuring knowledge about what medicine and healthcare are, how they function, and what differentiates good practice and good performance. The need to maintain macro-economic stability of the health service, faced with this and many other uncertainties, means that management bottom lines predominate over choices and decisions that have to be made within everyday individual patient services. Individual practice and care, the bedrock of healthcare, is, for this and other reasons, more and more subject to professional and managerial control and regulation.One characteristic of organisations shown to be good at making effective use of IT is their capacity to devolve decisions within the organisation to where they can be best made, for the purpose of meeting their customers' needs. IT should, in this context, contribute as an enabler and not as an enforcer of good information services. The information infrastructure must work effectively, both top down and bottom up, to accommodate these countervailing pressures. This issue is explored in the context of infrastructure to support electronic health records.Because of the diverse and changing requirements of the huge healthcare sector, and the need to sustain health records over many decades, standardised systems must concentrate on doing the easier things well and as simply as possible, while accommodating immense diversity of requirements and practice. The manner in which the healthcare information infrastructure can be formulated and implemented to meet useful practical goals is explored, in the context of two case studies of research in CHIME at UCL and their user communities.Healthcare has severe problems both as a provider of information and as a purchaser of information systems. This has an impact on both its customer and its supplier relationships. Healthcare needs to become a better purchaser, more aware and realistic about what technology can and cannot do and where research is needed. Industry needs a greater awareness of the complexity of the healthcare domain, and the subtle ways in which information is part of the basic contract between healthcare professionals and patients, and the trust and understanding that must exist between them. It is an ideal domain for deeper collaboration between academic institutions and industry

Developing the first generally-available openEHR archetypes and templates for physiotherapy: an example of building clinical models and modelling capacity via student-led academic–industrial collaboration

Given the clear assertions in published literature that physiotherapy needs, and will benefit from, electronic health records, it was surprising that the international repository for clinical models for the openEHR record architecture (the Clinical Knowledge Manager or CKM at openehr.org/ckm ) made no reference to physiotherapy, and that other published modelling work had not used formalisms that provided for easy re-use. We set out to explore what would be involved in changing this

Historical overview of development in methods to estimate burden of disease due to congenital disorders

Congenital disorders (often also called birth defects) are an important cause of mortality and disability. They encompass a wide range of disorders with differing severity that can affect any aspect of structure or function. Understanding their epidemiology is important in developing appropriate services both for their prevention and treatment. The need for epidemiological data on congenital disorders has been recognised for many decades. Here, we provide a historical overview of work that has led to the development of the Modell Global Database of Congenital Disorders (MGDb)-a tool that can be used to generate evidence-based country, regional and global estimates of the birth prevalence and outcomes of congenital disorders

Estimating the birth prevalence and pregnancy outcomes of congenital malformations worldwide

Congenital anomaly registries have two main surveillance aims: firstly to define baseline epidemiology of important congenital anomalies to facilitate programme, policy and resource planning, and secondly to identify clusters of cases and any other epidemiological changes that could give early warning of environmental or infectious hazards. However, setting up a sustainable registry and surveillance system is resource-intensive requiring national infrastructure for recording all cases and diagnostic facilities to identify those malformations that that are not externally visible. Consequently, not all countries have yet established robust surveillance systems. For these countries, methods are needed to generate estimates of prevalence of these disorders which can act as a starting point for assessing disease burden and service implications. Here, we describe how registry data from high-income settings can be used for generating reference rates that can be used as provisional estimates for countries with little or no observational data on non-syndromic congenital malformations

Sickle Cell Anaemia in a Changing World

David Osrin and Edward Fottrell comment on new research by Frédéric Piel and colleagues on the growing burden of sickle cell anemia, and discuss the need for changing policy and health services in response to epidemiologic transitions in child mortality. Please see later in the article for the Editors' Summary