What makes digital health intrusive? Qualitative findings from an international study on diabetes

Abstract Background Remote digital monitoring (RDM, i.e., using digital devices to monitor patients' health and behavior) is a novel care model that can improve health outcomes for people with chronic conditions. However, it could be intrusive to patients' lives. We sought to understand which aspects of RDM make it intrusive to patients and why. Methods We performed content analysis of qualitative data collected by using open-ended questions in an international, online survey with a convenience sample of adults with type 1 or 2 diabetes (February-July 2019). Participants were first shown scenarios describing possible RDM features (i.e. different RDM tools [for glucose or food monitoring], feedback loops [receiving feedback in consultation, or remotely by a physician, or by artificial intelligence], and data handling options [by the public or private sector]). Results We analyzed data from 709 participants from 24 countries (38% men, median age 38, 54% type 1). Participants found RDM burdensome (n = 468). Burden arose from RDM features that caused disruption in daily life (e.g., alerts), features that may invite undesirable attention in public (e.g., visible wearable sensors may invite questions about one's health), or from having to adapt one's life to fit in RDM (e.g., adapt one's mealtime routine around food monitoring). Participants wanted control, particularly over sharing food-monitoring data with health care professionals in real-time to receive feedback (n = 440). They felt RDM could expose a delicate topic to 'surveillance' by authority figures (i.e., their data may 'reveal' poor dietary habits, leading to criticism by physicians). Intrusion could take the form of RDM eroding the patient-physician relationship (n = 34), or fear of data misuse (n = 206), which was associated with private-sector financial interests. Conclusions Our findings offer directions for minimally intrusive RDM design and show that digital health may cause concerns about stigma and treatment burden. Key messages Remote digital monitoring is intrusive when it increases treatment burden and limits patients’ control over their own health. “Minimally intrusive” digital health design could increase patient acceptability and, ultimately, foster scalability.