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.