Development and evaluation of a digital patient-provider communication intervention to facilitate shared decision making in chronic health care settings: InvolveMe

Abstract

Living with chronic health conditions often imply symptoms that negatively affect health-related quality of life. Effective symptom management necessitates understanding and addressing patient symptoms, needs, and preferences, yet identifying these can be challenging for both patients and health care providers. Unaddressed symptoms can exacerbate condition and lead to unnecessary suffering. Despite the potential benefits, widespread adoption of digital interventions in specialist health care services remains limited. This dissertation aimed to develop and evaluate a digital patient-provider communication intervention, InvolveMe, focusing on non-functioning pituitary adenoma and renal transplant recipients. Through an exploratory research design guided by the United Kingdom's Medical Research Council framework for complex intervention, studies exploring patient and provider perspectives were conducted through interviews, focus groups, workshops, project steering group committee meetings, system log data and a feasibility pilot study. Findings revealed insights into challenges experienced by patients, which informed the development of InvolveMe's content and system; a symptom- and needs assessment and access to secure messaging. By identifying potential facilitators and barriers, the intervention was tailored to the local context and key aspects for an implementation plan were highlighted. The feasibility pilot demonstrated InvolveMe to be a user-friendly and feasible intervention, where use of symptom- and needs assessment and secure messaging worked well, thus supporting shared decision making. Overall, this dissertation contributes to understanding how tailored interventions like InvolveMe, can provide insights into patients' challenges, preferences and facilitate shared decision making, enhancing chronic care.