JMIR Publications

ABSTRACT

Background:

RealWorld4Clinic is a European consortium which is currently developing an implantable monitoring device for acute heart failure prevention.

Objective:

This study is part of a research aiming at co-designing with patients information and education materials on this implant. Before doing so, we need to understand patients’ perspectives on heart failure, implants, and remote monitoring.

Methods:

First, four patient collaborators were recruited to help us to design the study. During monthly meetings held remotely, we defined the main questions and hypotheses together. Secondly, 26 additional interviews were conducted remotely in order to test these hypotheses. During both phases, we used affect stories, which are life narratives focusing on affects and relationships, in order to highlight the main social issues which should be addressed by the research according to the patients.

Results:

Contextual factors of diagnosis, age, and severity of illness strongly influence patient experience. However, these variables do not appear to influence the choice regarding being implanted, which relies mostly on the individual patient’s trust in their physicians. It seems that the major cause of anxiety for the patient is not the implant but the disease itself, even if some people may initially be concerned by the idea of “becoming a cyborg”. Remote monitoring of cardiac implants should draw on existing remote disease management programs focusing on a long-term relationship between the patient and their medical team.

Conclusions:

Co-design with affect stories is a useful method in quickly identifying the main social issues related to a new health technology.