Using cardiac implantable electronic device data to facilitate health decision making: A design study

For some individuals who live with chronic heart failure (CHF), cardiac implantable electronic devices (CIEDs) offer lifesaving therapy. Remote monitoring data from CIEDs are transmitted on a routine schedule for highly trained clinical staff to review. However, the remote monitoring data and clinical interpretations are not directly accessible to patients. Hence, people living with CIEDs are not able to reflect on their health data, let alone take any health action based on relevant data buried in their electronic health record (EHR). Prior research has shown that properly timed and tailored health data through a personal health record (PHR) can enable individual decisions about health in novel ways. However, in order to be effective, patients' needs must be well described before designing a tailored intervention. This study is an early investigation into ways in which complex CIED data can be harnessed to guide the health decisions of individuals living with CHF. To understand these information needs, we conducted four focus groups (N = 24) comprised of adults living with CHF (who were undergoing remote monitoring of their CIED data) and their informal caregivers (spouse or adult child). Focus group participants shared preferences for on-demand and personalized push message education. Through our analysis, we identified specific elements of device data and delivery design that can help promote reflection on changes in disease progression and CIED function over time. In this paper, we describe design ideas for the delivery of tailored CIED data and education that supports patient-level decision making.