Background: Patient-driven innovation in diabetes management has resulted in a group of people with type 1 diabetes who choose to build and share knowledge around a do-it-yourself (DIY) open source artificial pancreas systems (OpenAPS). The purpose of this study was to examine Twitter data to understand how patients, caregivers, and care partners perceive OpenAPS, the personal and emotional ramifications of using OpenAPS, and the influence of OpenAPS on daily life.
Methods: Qualitative netnography was used to analyze #OpenAPS on Twitter over a two-year period.
Results: There were 328 patients, caregivers, and care partners who generated 3347 tweets. One overarching theme, OpenAPS changes lives, and five subthemes emerged from the data: (1) OpenAPS use suggests self-reported A1C and glucose variability improvement, (2) OpenAPS improves sense of diabetes burden and quality of life, (3) OpenAPS is perceived as safe, (4) patient/caregiver-provider interaction related to OpenAPS, and (5) technology adaptation for user needs.
Conclusions: As users of a patient-driven technology, OpenAPS users are self-reporting improved A1C, day-to-day glucose levels, and quality of life. Safety features important to individuals with diabetes are perceived to be embedded into OpenAPS technology. Twitter analysis provides insight on a patient population driving an innovative solution to improve their quality of diabetes care.
Keywords: OpenAPS; Twitter; artificial pancreas; diabetes; patient innovation; social media.