Detecting deterioration in patients with chronic disease using telemonitoring: navigating the 'trough of disillusionment'.

OBJECTIVES: To examine the evidence base for telemonitoring designed for patients who have chronic obstructive pulmonary disease and heart failure, and to assess whether telemonitoring fulfils the principles of monitoring and is ready for implementation into routine settings. DESIGN: Qualitative data collection using interviews and participation in a multi-path mapping process. PARTICIPANTS: Twenty-six purposively selected informants completed semi-structured interviews and 24 individuals with expertise in the relevant clinical and informatics domains from academia, industry, policy and provider organizations and participated in a multi-path mapping workshop. RESULTS: The evidence base for the effectiveness of telemonitoring is weak and inconsistent, with insufficient cost-effectiveness studies. When considered against an accepted definition of monitoring, telemonitoring is found wanting. Telemonitoring has not been able so far to ensure that the technologies fit into the life world of the patient and into the clinical and organizational milieu of health service delivery systems. CONCLUSIONS: To develop effective telemonitoring for patients with chronic disease, more attention needs to be given to agreeing the central aim of early detection and, to ensure potential implementation, engaging a wide range of stakeholders in the design process, especially patients and clinicians.

Bridging two translation gaps: a new informatics research agenda for telemonitoring of chronic disease.

OBJECTIVE: To propose a research agenda that addresses technological and other knowledge gaps in developing telemonitoring solutions for patients with chronic diseases, with particular focus on detecting deterioration early enough to intervene effectively. DESIGN: A mixed methods approach incorporating literature review, key informant, and focus group interviews to gain an in-depth, multidisciplinary understanding of current approaches, and a roadmapping process to synthesise a research agenda. RESULTS: Counter to intuition, the research agenda for early detection of deterioration in patients with chronic diseases is not only primarily about advances in sensor technology but also much more about the problems of clinical specification, translation, and interfacing. The ultimate aim of telemonitoring is not fully agreed between the actors (patients, clinicians, technologists, and service providers). This leads to unresolved issues such as: (1) How are sensors used by patients as part of daily routines? (2) What are the indicators of early deterioration and how might they be used to trigger alerts? (3) How should alerts lead to appropriate levels of responses across different agencies and sectors? CONCLUSION: Attempts to use telemonitoring to improve the care of patients with chronic diseases over the last two decades have so far failed to lead to systems that are embedded in routine clinical practice. Attempts at implementation have paid insufficient attention to understanding patient and clinical needs and the complex dynamics and accountabilities that arise at the level of service models. A suggested way ahead is to co-design technology and services collaboratively with all stakeholders.

Simultaneous trend analysis for evaluating outcomes in patient-centred health monitoring services.

The research aim underpinning the Healthcare@Home (HH) information system described here was to enable 'near real time' risk analysis for disease early detection and prevention. To this end, we are implementing a family of prototype web services to 'push' or 'pull' individual's health-related data via an system of clinical hubs, mobile communication devices and/or dedicated home-based network computers. We are examining more efficient methods for ethical use of such data in timeline-based (i.e. 'longitudinal') data analysis systems. A consistent data collation infrastructure is being created for use along the 'patient path'--accessible wherever patients happen to be. This 'patient-centred' infrastructure can be applied in the evaluation of disease progression risk (in the light of clinical understanding of disease processes). In this paper we describe the requirements for making multi-data trend management 'scale-up', together with some requirements of an 'end-to-end' functioning data collection system. A Service-Oriented Architecture (SOA) approach is used to maximise benefits from (1) clinical evidence and (2) computational models of disease progression that can be made available elsewhere on the SOA. We discuss the implications of this so-called 'closed loop' approach for improving healthcare intervention outcomes, patient safety, decision support, objective measurement of service quality and in providing inputs for quantitative healthcare (predictive) modelling.

Alchemist multimodal workflows for diabetic retinopathy research, disease prevention and investigational drug discovery.

In this paper we present mechanisms for imaging and spectral data discovery, as applied to the early detection of pathologic mechanisms underlying diabetic retinopathy in research and clinical trial scenarios. We discuss the Alchemist framework, built using a generic peer-to-peer architecture, supporting distributed database queries and complex search algorithms based on workflow. The Alchemist is a domain-independent search mechanism that can be applied to search and data discovery scenarios in many areas. We illustrate Alchemist's ability to perform complex searches composed as a collection of peer-to-peer overlays, Grid-based services and workflows, e.g. applied to image and spectral data discovery, as applied to the early detection and prevention of retinal disease and investigational drug discovery. The Alchemist framework is built on top of decentralised technologies and uses industry standards such as Web services and SOAP for messaging.

Multigene family isoform profiling from blood cell lineages.

BACKGROUND: Analysis of cell-selective gene expression for families of proteins of therapeutic interest is crucial when deducing the influence of genes upon complex traits and disease susceptibility. Presently, there is no convenient tool for examining isoform-selective expression for large gene families. A multigene isoform profiling strategy was developed and used to investigate the inwardly rectifying K+ (Kir) channel family in human leukocytes. Comprised of seven subfamilies, Kir channels have important roles in setting the resting membrane potential in excitable and non-excitable cells. RESULTS: Gene sequence alignment allowed determination of "islands" of amino acid homology, and sub-family "centred" priming permitted simultaneous co-amplification of each family member. Validation and cross-priming analysis was performed against a panel of cognate Kir channel clones. Radiolabelling and diagnostic restriction digestion of pooled PCR products enabled determination of distinct Kir gene expression profiles in pure populations of human neutrophils, eosinophils and lung mast cells, with conservation of Kir2.0 isoforms amongst the leukocyte subsets. We also identified a Kir2.0 channel product, which may potentially represent a novel family member. CONCLUSIONS: We have developed a novel, rapid and flexible strategy for the determination of gene family isoform composition in any cell type with the additional capacity to detect hitherto unidentified family members and verified its application in a study of Kir channel isoform expression in human leukocytes.