Open-source automated insulin delivery systems and formal healthcare: A qualitative study of challenges in the interaction between service-users with type 1 diabetes and healthcare professionals

OBJECTIVES: To explore the challenges that open-source automated insulin delivery systems pose to the encounter between service-users and healthcare professionals and how these challenges might be addressed in the future.

METHODS: Five adult service-users and six healthcare professionals participated in semi-structured interviews. A six-step thematic analysis was conducted, the focus being on challenges and needs for improvement of the interactions.

RESULTS: The analysis revealed three overarching challenges and wishes: (1) Lack of exchange of experiences. Service-users are reticent about disclosing their use of the systems to healthcare professionals. (2) Unclear ethical responsibility. Service-users are aware of their responsibility and guidelines can help to alleviate healthcare professional's legal responsibility; however, ambiguities around ethical responsibility for healthcare professionals remain an impediment to meaningful clinical interactions. (3) Unresolved individual and mutual expectations. Service-users expect better access to technology and focus on psychosocial aspects. In contrast, healthcare professionals fear the burden associated with the rising technical expectations.

CONCLUSION: Transparency and openness towards open-source systems need to be part of service-user and healthcare professionals interaction. Requirements for future care include improved knowledge about the systems, an openminded approach towards user-driven initiatives among healthcare professionals, and a focus on psychosocial aspects in the interaction.