Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives
BackgroundAlthough commercially developed automated insulin delivery (AID) systems have recently been approved and become available in a limited number of countries, they are not universally available, accessible, or affordable. Therefore, open-source AID systems, cocreated b...
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JMIR Publications
2025-01-01
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| Series: | Journal of Medical Internet Research |
| Online Access: | https://www.jmir.org/2025/1/e48406 |
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| author | Bryan Cleal Yanbing Chen Mandy Wäldchen Hanne Ballhausen Drew Cooper Shane O'Donnell Christine Knoll Niklas Krug Klemens Raile Tebbe Ubben Adrian Tappe Dana Lewis Ingrid Willaing Timothy Skinner Katarina Braune |
| author_facet | Bryan Cleal Yanbing Chen Mandy Wäldchen Hanne Ballhausen Drew Cooper Shane O'Donnell Christine Knoll Niklas Krug Klemens Raile Tebbe Ubben Adrian Tappe Dana Lewis Ingrid Willaing Timothy Skinner Katarina Braune |
| author_sort | Bryan Cleal |
| collection | DOAJ |
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BackgroundAlthough commercially developed automated insulin delivery (AID) systems have recently been approved and become available in a limited number of countries, they are not universally available, accessible, or affordable. Therefore, open-source AID systems, cocreated by an online community of people with diabetes and their families behind the hashtag #WeAreNotWaiting, have become increasingly popular.
ObjectiveThis study focused on examining the lived experiences, physical and emotional health implications of people with diabetes following the initiation of open-source AID systems, their perceived challenges, and their sources of support, which have not been explored in the existing literature.
MethodsWe collected data from 383 participants across 29 countries through 2 sets of open-ended questions in a web-based survey on their experience of building and using open-source AID systems. Narratives were thematically analyzed, and a coding framework was identified through iterative alignment.
ResultsParticipants consistently reported improvements in glycemia, physical health, sleep quality, emotional impact on everyday life, and quality of life. Knowledge of open-source AID systems was largely obtained through the #WeAreNotWaiting community, which was also the primary source of practical and emotional support. The acquisition of the components to build an open-source AID system and the technical setup were sometimes problematic.
ConclusionsThe #WeAreNotWaiting movement represents a primary example of how informed and connected patients proactively address their unmet needs, provide peer support to each other, and obtain results through impactful, user-driven solutions. Alongside providing evidence on the safety and efficacy of open-source AID systems, this qualitative analysis helps in understanding how patients’ experiences and benefits range from psychosocial improvements to a reduction in the burden of managing diabetes.
International Registered Report Identifier (IRRID)RR2-10.2196/15368 |
| format | Article |
| id | doaj-art-9e9a042318794de995f800b5549654dc |
| institution | Kabale University |
| issn | 1438-8871 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | Journal of Medical Internet Research |
| spelling | doaj-art-9e9a042318794de995f800b5549654dc2025-01-06T20:00:32ZengJMIR PublicationsJournal of Medical Internet Research1438-88712025-01-0127e4840610.2196/48406Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient NarrativesBryan Clealhttps://orcid.org/0000-0003-3065-7364Yanbing Chenhttps://orcid.org/0000-0002-3093-2904Mandy Wäldchenhttps://orcid.org/0000-0003-0404-517XHanne Ballhausenhttps://orcid.org/0000-0002-4530-7669Drew Cooperhttps://orcid.org/0000-0003-3847-8416Shane O'Donnellhttps://orcid.org/0000-0002-3778-705XChristine Knollhttps://orcid.org/0000-0001-7376-3365Niklas Krughttps://orcid.org/0000-0001-5147-8846Klemens Railehttps://orcid.org/0000-0002-0842-1737Tebbe Ubbenhttps://orcid.org/0000-0003-2573-2198Adrian Tappehttps://orcid.org/0000-0001-8501-7247Dana Lewishttps://orcid.org/0000-0001-9176-6308Ingrid Willainghttps://orcid.org/0000-0002-3082-8816Timothy Skinnerhttps://orcid.org/0000-0002-0018-6963Katarina Braunehttps://orcid.org/0000-0001-6590-245X BackgroundAlthough commercially developed automated insulin delivery (AID) systems have recently been approved and become available in a limited number of countries, they are not universally available, accessible, or affordable. Therefore, open-source AID systems, cocreated by an online community of people with diabetes and their families behind the hashtag #WeAreNotWaiting, have become increasingly popular. ObjectiveThis study focused on examining the lived experiences, physical and emotional health implications of people with diabetes following the initiation of open-source AID systems, their perceived challenges, and their sources of support, which have not been explored in the existing literature. MethodsWe collected data from 383 participants across 29 countries through 2 sets of open-ended questions in a web-based survey on their experience of building and using open-source AID systems. Narratives were thematically analyzed, and a coding framework was identified through iterative alignment. ResultsParticipants consistently reported improvements in glycemia, physical health, sleep quality, emotional impact on everyday life, and quality of life. Knowledge of open-source AID systems was largely obtained through the #WeAreNotWaiting community, which was also the primary source of practical and emotional support. The acquisition of the components to build an open-source AID system and the technical setup were sometimes problematic. ConclusionsThe #WeAreNotWaiting movement represents a primary example of how informed and connected patients proactively address their unmet needs, provide peer support to each other, and obtain results through impactful, user-driven solutions. Alongside providing evidence on the safety and efficacy of open-source AID systems, this qualitative analysis helps in understanding how patients’ experiences and benefits range from psychosocial improvements to a reduction in the burden of managing diabetes. International Registered Report Identifier (IRRID)RR2-10.2196/15368https://www.jmir.org/2025/1/e48406 |
| spellingShingle | Bryan Cleal Yanbing Chen Mandy Wäldchen Hanne Ballhausen Drew Cooper Shane O'Donnell Christine Knoll Niklas Krug Klemens Raile Tebbe Ubben Adrian Tappe Dana Lewis Ingrid Willaing Timothy Skinner Katarina Braune Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives Journal of Medical Internet Research |
| title | Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives |
| title_full | Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives |
| title_fullStr | Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives |
| title_full_unstemmed | Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives |
| title_short | Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives |
| title_sort | examining the emotional and physical health impact in users of open source automated insulin delivery and sources of support qualitative analysis of patient narratives |
| url | https://www.jmir.org/2025/1/e48406 |
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