Summary of work
HaemophiliaLIVE used a novel digital ethnography methodology to gain insights into the impact of the condition on the lives of people with haemophilia and their families. Because people with haemophilia are typically diagnosed at or before birth, families generally develop very close relationships with their team of haemophilia specialist consultants and nurses. Despite this, healthcare professionals told Novo Nordisk that they had little knowledge of the real impact of haemophilia on patients and their families in real life outside the consultation, and this limited their opportunities to fully support their patients. Novo Nordisk set out to fill this insight gap in order to develop educational materials that would support healthcare professionals and haemophilia patients. The simplicity of the HaemophiliaLIVE process from the ethnography participants’ perspective, as exemplified by unanimously positive feedback, was a direct result of thoughtful development of the comprehensive user kit by the agency and an expert steering group of specialist haemophilia nurses. This insured flawless implementation of the project and the revelation of previously unknown insights. The agency’s interpretation of these insights is already being used for the development of initiatives that will improve care for people with haemophilia across the ages and stages.
This was a creative way to carry out patient research and gain rich content for future use. A really innovative and unobtrusive way of understanding the lives of a very specific group of patients.