Patients with heart failure as co-designers of an educational website: implications for medical education

OBJECTIVES: To identify the learning needs of patients with heart failure between outpatients follow-up visits from their perspective and to ascertain what they emphasize as being important in the design of an educational website for them. METHODS: We conducted a two-step qualitative study at Aarhus University Hospital, Denmark. Twenty patients with heart failure participated either in focus group interviews, diary writing, or video-recorded design sessions. Data on learning needs were collected in step 1 and analyses, therefore, helped develop the preliminary prototypes of a website. In step 2, patients worked on the prototypes in video-recorded design sessions, employing a think-aloud method. The interviews were transcribed and a content analysis was performed on the text and video data. RESULTS: Patients’ learning needs were multifaceted, driven by anxiety, arising from, and often influenced by, such daily situations and contexts as the medical condition, medication, challenges in daily life, and where to get support and how to manage their self-care. They emphasized different ways of adapting the design to the patient group to enable interaction with peers and professionals and specific interface issues. CONCLUSIONS: This study provided insights into the different learning needs of patients with heart failure, how managing daily situations is the starting point for these needs and how emotions play a part in patients’ learning. Moreover, it showed how patient co-designers proved to be useful for understanding how to design a website that supports patients’ learning: insights, which may become important in designing online learning tools for patients.