Patients’ Information Needs Related to a Monitoring Implant for Heart Failure: Co-designed Study Based on Affect Stories

Abstract

Background: RealWorld4Clinic is a European consortium that is currently developing an implantable monitoring device for acute heart failure prevention. Objective: This study aimed to identify the main issues and information needs related to this new cardiac implant from the patients’ perspective. Methods: A total of 3 patient collaborators were recruited to help us design the study. During 4 remotely held meetings (each lasting for 2 hours), we defined the main questions and hypotheses together. Next, 26 additional interviews were conducted remotely to test these hypotheses. During both phases, we used affect stories, which are life narratives focusing on affect and the relationship between patients and the care ecosystem, to highlight the main social issues that should be addressed by the research according to the patients. Results: Context of diagnosis, age, and severity of illness strongly influence patient experience. However, these variables do not seem 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, although some people may initially be concerned over 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 for quickly identifying the main social issues related to information about a new health technology.