Clinical foundations and information architecture for the implementation of a federated health record service

Clinical care increasingly requires healthcare professionals to access patient record information that may be distributed across multiple sites, held in a variety of paper and electronic formats, and represented as mixtures of narrative, structured, coded and multi-media entries. A longitudinal person-centred electronic health record (EHR) is a much-anticipated solution to this problem, but its realisation is proving to be a long and complex journey. This Thesis explores the history and evolution of clinical information systems, and establishes a set of clinical and ethico-legal requirements for a generic EHR server. A federation approach (FHR) to harmonising distributed heterogeneous electronic clinical databases is advocated as the basis for meeting these requirements. A set of information models and middleware services, needed to implement a Federated Health Record server, are then described, thereby supporting access by clinical applications to a distributed set of feeder systems holding patient record information. The overall information architecture thus defined provides a generic means of combining such feeder system data to create a virtual electronic health record. Active collaboration in a wide range of clinical contexts, across the whole of Europe, has been central to the evolution of the approach taken. A federated health record server based on this architecture has been implemented by the author and colleagues and deployed in a live clinical environment in the Department of Cardiovascular Medicine at the Whittington Hospital in North London. This implementation experience has fed back into the conceptual development of the approach and has provided "proof-of-concept" verification of its completeness and practical utility. This research has benefited from collaboration with a wide range of healthcare sites, informatics organisations and industry across Europe though several EU Health Telematics projects: GEHR, Synapses, EHCR-SupA, SynEx, Medicate and 6WINIT. The information models published here have been placed in the public domain and have substantially contributed to two generations of CEN health informatics standards, including CEN TC/251 ENV 13606

Studies on Inequalities in Information Society. Proceedings of the Conference, Well-Being in the Information Society

Siirretty Doriast

Semantic discovery and reuse of business process patterns

Patterns currently play an important role in modern information systems (IS) development and their use has mainly been restricted to the design and implementation phases of the development lifecycle. Given the increasing significance of business modelling in IS development, patterns have the potential of providing a viable solution for promoting reusability of recurrent generalized models in the very early stages of development. As a statement of research-in-progress this paper focuses on business process patterns and proposes an initial methodological framework for the discovery and reuse of business process patterns within the IS development lifecycle. The framework borrows ideas from the domain engineering literature and proposes the use of semantics to drive both the discovery of patterns as well as their reuse

Development of an online self-management intervention for adults with type 2 diabetes (HeLP-Diabetes)

Background: The prevalence of type 2 diabetes is increasing and estimates suggest that by 2030 nearly 1 in 10 adults worldwide will be living with this condition. 10% of the NHS budget is spent on treating diabetes and related complications like heart attacks, strokes and blindness. Improving self-management in people living with type 2 diabetes is crucial in reducing the morbidity and mortality associated with this disease. Uptake of group-based self-management training is low and there is an urgent need for evidence based and effective alternatives. Computer-based interventions have the potential to provide cost-effective self-management training and improve outcomes for people with type 2 diabetes. The eHealth Unit was awarded a 5 year NIHR Programme grant for Applied Research to develop, evaluate and implement an online self-management intervention for adults with type 2 diabetes. This thesis describes my contribution towards developing the intervention. Aims/objectives: To describe the development of an online self-management intervention for adults with type 2 diabetes. Methods: The intervention development process was modelled on the MRC guidelines for developing complex interventions. This started with a systematic review of the literature on computer-based self-management interventions for adults with type 2 diabetes. Suitable theories to underpin the intervention were identified and used to construct a logic model to describe the potential mode of action. Qualitative work with people living with type 2 diabetes and health professionals was used to explore patient and professional defined wants and needs from such interventions. This data was then synthesized to inform the development of a theory-based online intervention called HeLP-Diabetes, designed to improve self-management in people living with type 2 diabetes. Conclusions: The synthesis of previous evidence with new qualitative data from patients and health professionals has helped to create a unique online intervention that will hopefully help bridge current gaps in the delivery of self-management training and improve outcomes for people with type 2 diabetes

Medical Informatics

Information technology has been revolutionizing the everyday life of the common man, while medical science has been making rapid strides in understanding disease mechanisms, developing diagnostic techniques and effecting successful treatment regimen, even for those cases which would have been classified as a poor prognosis a decade earlier. The confluence of information technology and biomedicine has brought into its ambit additional dimensions of computerized databases for patient conditions, revolutionizing the way health care and patient information is recorded, processed, interpreted and utilized for improving the quality of life. This book consists of seven chapters dealing with the three primary issues of medical information acquisition from a patient's and health care professional's perspective, translational approaches from a researcher's point of view, and finally the application potential as required by the clinicians/physician. The book covers modern issues in Information Technology, Bioinformatics Methods and Clinical Applications. The chapters describe the basic process of acquisition of information in a health system, recent technological developments in biomedicine and the realistic evaluation of medical informatics

Designing an architecture for secure sharing of personal health records : a case of developing countries

Includes bibliographical references.While there has been an increase in the design and development of Personal Health Record (PHR) systems in the developed world, little has been done to explore the utility of these systems in the developing world. Despite the usual problems of poor infrastructure, PHR systems designed for the developing world need to conform to users with different models of security and literacy than those designed for developed world. This study investigated a PHR system distributed across mobile devices with a security model and an interface that supports the usage and concerns of low literacy users in developing countries. The main question addressed in this study is: “Can personal health records be stored securely and usefully on mobile phones?” In this study, mobile phones were integrated into the PHR architecture that we/I designed because the literature reveals that the majority of the population in developing countries possess mobile phones. Additionally, mobile phones are very flexible and cost efficient devices that offer adequate storage and computing capabilities to users for typically communication operations. However, it is also worth noting that, mobile phones generally do not provide sufficient security mechanisms to protect the user data from unauthorized access

Validation of design artefacts for blockchain-enabled precision healthcare as a service.

Healthcare systems around the globe are currently experiencing a rapid wave of digital disruption. Current research in applying emerging technologies such as Big Data (BD), Artificial Intelligence (AI), Machine Learning (ML), Deep Learning (DL), Augmented Reality (AR), Virtual Reality (VR), Digital Twin (DT), Wearable Sensor (WS), Blockchain (BC) and Smart Contracts (SC) in contact tracing, tracking, drug discovery, care support and delivery, vaccine distribution, management, and delivery. These disruptive innovations have made it feasible for the healthcare industry to provide personalised digital health solutions and services to the people and ensure sustainability in healthcare. Precision Healthcare (PHC) is a new inclusion in digital healthcare that can support personalised needs. It focuses on supporting and providing precise healthcare delivery. Despite such potential, recent studies show that PHC is ineffectual due to the lower patient adoption in the system. Anecdotal evidence shows that people are refraining from adopting PHC due to distrust. This thesis presents a BC-enabled PHC ecosystem that addresses ongoing issues and challenges regarding low opt-in. The designed ecosystem also incorporates emerging information technologies that are potential to address the need for user-centricity, data privacy and security, accountability, transparency, interoperability, and scalability for a sustainable PHC ecosystem. The research adopts Soft System Methodology (SSM) to construct and validate the design artefact and sub-artefacts of the proposed PHC ecosystem that addresses the low opt-in problem. Following a comprehensive view of the scholarly literature, which resulted in a draft set of design principles and rules, eighteen design refinement interviews were conducted to develop the artefact and sub-artefacts for design specifications. The artefact and sub-artefacts were validated through a design validation workshop, where the designed ecosystem was presented to a Delphi panel of twenty-two health industry actors. The key research finding was that there is a need for data-driven, secure, transparent, scalable, individualised healthcare services to achieve sustainability in healthcare. It includes explainable AI, data standards for biosensor devices, affordable BC solutions for storage, privacy and security policy, interoperability, and usercentricity, which prompts further research and industry application. The proposed ecosystem is potentially effective in growing trust, influencing patients in active engagement with real-world implementation, and contributing to sustainability in healthcare

Type 2 diabetes mellitus and online learning : a patient-centred approach

Type 2 diabetes mellitus is one of the most pressing global health problems. It is often considered to be a ‘lifestyle condition’ associated with distinct patterns of nutritional and physical activity. Treatment options can be biomedical or a combination of educational and biomedical approaches. Treatment strategies that focus on educational interventions in a health context tend to focus on psychological constructs (self-efficacy, for example) but are often under-theorised in terms of learning theory. Technology-based interventions are also similarly lacking in their employment of learning theory as they often tend to focus on the transactional nature of information flow between the user and adopted technology platform. This project, on the other hand, places learning theory at the core of the design of an online-based, patient-centred learning community for people with type 2 diabetes. The project adopted a design-based research approach and the objective was to provide an environment conducive to the development of a community of practice and learning for participants with type 2 diabetes and to explore if the characteristics of transformative learning could be identified. Interviews, self-efficacy surveys and focus groups were conducted during various stages of the design. The analytical approach included activity theory and the community of inquiry framework. The results demonstrate that a design-based research process can be effectively utilised for the development of an online patient-centred learning environment in the context of type 2 diabetes. It was shown that the adoption of the theory of transformative learning can help to frame the various types of learning that take place during the process associated with self-management of a chronic disease such as diabetes. Analysis of the engagement with the learning community Type 2 diabetes mellitus and online learning: a patient-centred approach indicates that the characteristics of transformative learning were partially realised although a community of practice was not established. The study illustrates the role that a theory-rich patient-centred learning environment can play in the ongoing process of patient care in the context of type 2 diabetes. Interventions in other chronic disease contexts may also benefit from the results of this study