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

Abstract

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.