Background: Patients with diabetes have developed innovative do-it-yourself (DIY) methods for adapting existing medical devices to better fit individual needs.
Method: A multiple method study used Symplur Analytics to analyze aggregated Twitter data of #WeAreNotWaiting and #OpenAPS tweets between 2014 and 2017 to examine DIY patient-led innovation. Conversation sentiment was examined between diabetes stakeholders to determine changes over time. Two hundred of the most shared photos were analyzed to understand visual representations of DIY patient-led innovations. Finally, discourse analysis was used to identify the personas who engage in DIY patient-led diabetes technologies activities and conversations on Twitter.
Results: A total of 7886 participants who generated 46 578 tweets were included. Sentiment analysis showed that 82%-85% of interactions around DIY patient-led innovation was positive among patient/caregiver and physician groups. Through photo analysis, five content themes emerged: (1) disseminating media and conference coverage, (2) showcasing devices, (3) celebrating connections, (4) providing instructions, and (5) celebrating accomplishments. Six personas emerged across the overlapping userbase: (1) fearless leaders, (2) loopers living it up, (3) parents on a mission, (4) the tech titans, (5) movement supporters, and (6) healthcare provider advocates. Personas had varying goals and behaviors within the community.
Conclusions: #WeAreNotWaiting and #OpenAPS on Twitter reveal a fast-moving patient-led movement focused on DIY patient innovation that is further mobilized by an expanding and diverse userbase. Further research is indicated to bring technology savvy persons with diabetes into conversation with healthcare providers and researchers alike.
Keywords: artificial pancreas system; continuous glucose monitor; diabetes; diabetes technology; insulin pump.