Experiences of chronically ill patients with their engagement, regarding treatment and the role of the electronic patient portal

Abstract

Background: In the last two decades, the relationship between chronically ill patients and healthcare professionals has changed. This newly formed partnership involves the engagement of the patients. A promising tool to support patient engagement is the so-called patient portal. However, recent studies focused on use and users but little is known about the experiences of chronically ill patients regarding engagement in their current care and the role of a portal. More insight into this matter could help improve patient engagement with the help of a portal. Research questions: 1.How do chronically ill patients experience patient engagement, in their multidisciplinary care at the outpatient clinic? 2. What is the role of a portal regarding the experience of patient engagement? Methods: A generic qualitative research approach was executed, using semi- structured interviews and thematic analyses. Twelve interviews were carried out until data saturation was reached. The studied population was chronically ill, patients from the outpatient clinic department of dermatology & rheumatology UMC-Utrecht. Results In the experience of patient’s knowledge about their disease and treatment and their level of trust in their professional contributes to their feeling of engagement. The consequences of engagement are shared-decision-making, adherence and self-management. A patient portal can give information about previous consultations, long-term effects of treatment, confirm if professionals understood the patients and if professionals keep their promises. Conclusion & implications The conditions for engagement are according to patient’s knowledge and trust. The portal can increase knowledge and confirm trust; therefore, patients feel more involved and in charge of their own treatment, with the feeling of shared-decision and adherence as a result. Further research should focus on experience of professionals on the use of a portal regarding engagement.