Patient-Driven Diabetes Technologies: Sentiment and Personas of the #WeAreNotWaiting and #OpenAPS Movements.
Biomarkers
/ blood
Blood Glucose
/ drug effects
Blood Glucose Self-Monitoring
/ instrumentation
Cooperative Behavior
Diabetes Mellitus, Type 1
/ blood
Diffusion of Innovation
Equipment Design
Health Personnel
Humans
Insulin Infusion Systems
Interdisciplinary Communication
Leadership
Monitoring, Ambulatory
/ instrumentation
Pancreas, Artificial
Parents
Patient Advocacy
Patient Participation
Qualitative Research
Quality of Life
Social Media
Stakeholder Participation
Transducers
artificial pancreas system
continuous glucose monitor
diabetes
diabetes technology
insulin pump
Journal
Journal of diabetes science and technology
ISSN: 1932-2968
Titre abrégé: J Diabetes Sci Technol
Pays: United States
ID NLM: 101306166
Informations de publication
Date de publication:
11 2020
11 2020
Historique:
pubmed:
7
7
2020
medline:
12
10
2021
entrez:
7
7
2020
Statut:
ppublish
Résumé
Patients with diabetes have developed innovative do-it-yourself (DIY) methods for adapting existing medical devices to better fit individual needs. 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. 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. #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.
Sections du résumé
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.
Identifiants
pubmed: 32627587
doi: 10.1177/1932296820932928
pmc: PMC7645133
doi:
Substances chimiques
Biomarkers
0
Blood Glucose
0
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
990-999Références
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