Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives

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

doi:10.2196/48406

Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives

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

^*Corresponding author for this work

Steno Diabetes Center Copenhagen

1 Citation (Scopus)

Abstract

BACKGROUND: Although 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.

OBJECTIVE: This 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.

METHODS: We 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.

RESULTS: Participants 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.

CONCLUSIONS: The #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.

Original language	English
Article number	e48406
Journal	Journal of Medical Internet Research
Volume	27
Pages (from-to)	e48406
ISSN	1439-4456
DOIs	https://doi.org/10.2196/48406
Publication status	Published - 6 Jan 2025

Keywords

Humans
Insulin/administration & dosage
Female
Male
Middle Aged
Adult
Emotions
Quality of Life/psychology
Insulin Infusion Systems
Narration
Qualitative Research
Diabetes Mellitus/psychology
Aged
challenges
automated insulin delivery
open source
insulin pumps
unmet needs
community support
type 1 diabetes
impact
diabetes technology
users
peer support
emotional health
mobile phone
continuous glucose monitoring
diabetes
support

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Cleal, B., Chen, Y., Wäldchen, M., Ballhausen, H., Cooper, D., O'Donnell, S., Knoll, C., Krug, N., Raile, K., Ubben, T., Tappe, A., Lewis, D., Willaing, I., Skinner, T., & Braune, K. (2025). 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, 27, e48406. Article e48406. https://doi.org/10.2196/48406

Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives. / Cleal, Bryan; Chen, Yanbing; Wäldchen, Mandy et al.
In: Journal of Medical Internet Research, Vol. 27, e48406, 06.01.2025, p. e48406.

Research output: Contribution to journal › Journal article › Research › peer-review

Cleal, B, Chen, Y, Wäldchen, M, Ballhausen, H, Cooper, D, O'Donnell, S, Knoll, C, Krug, N, Raile, K, Ubben, T, Tappe, A, Lewis, D, Willaing, I, Skinner, T & Braune, K 2025, '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, vol. 27, e48406, pp. e48406. https://doi.org/10.2196/48406

@article{44f1fb2428994a4681adde6e30883481,

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",

abstract = "BACKGROUND: Although 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.OBJECTIVE: This 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.METHODS: We 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.RESULTS: Participants 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.CONCLUSIONS: The \#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.",

keywords = "Humans, Insulin/administration \& dosage, Female, Male, Middle Aged, Adult, Emotions, Quality of Life/psychology, Insulin Infusion Systems, Narration, Qualitative Research, Diabetes Mellitus/psychology, Aged, challenges, automated insulin delivery, open source, insulin pumps, unmet needs, community support, type 1 diabetes, impact, diabetes technology, users, peer support, emotional health, mobile phone, continuous glucose monitoring, diabetes, support",

author = "Bryan Cleal and Yanbing Chen and Mandy W{\"a}ldchen and Hanne Ballhausen and Drew Cooper and Shane O'Donnell and Christine Knoll and Niklas Krug and Klemens Raile and Tebbe Ubben and Adrian Tappe and Dana Lewis and Ingrid Willaing and Timothy Skinner and Katarina Braune",

note = "{\textcopyright}Bryan Cleal, Yanbing Chen, Mandy W{\"a}ldchen, 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. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 06.01.2025.",

year = "2025",

month = jan,

day = "6",

doi = "10.2196/48406",

language = "English",

volume = "27",

pages = "e48406",

journal = "Journal of Medical Internet Research",

issn = "1439-4456",

publisher = "JMIR Publications Inc.",

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TY - JOUR

T1 - Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support

T2 - Qualitative Analysis of Patient Narratives

AU - Cleal, Bryan

AU - Chen, Yanbing

AU - Wäldchen, Mandy

AU - Ballhausen, Hanne

AU - Cooper, Drew

AU - O'Donnell, Shane

AU - Knoll, Christine

AU - Krug, Niklas

AU - Raile, Klemens

AU - Ubben, Tebbe

AU - Tappe, Adrian

AU - Lewis, Dana

AU - Willaing, Ingrid

AU - Skinner, Timothy

AU - Braune, Katarina

N1 - ©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. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 06.01.2025.

PY - 2025/1/6

Y1 - 2025/1/6

N2 - BACKGROUND: Although 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.OBJECTIVE: This 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.METHODS: We 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.RESULTS: Participants 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.CONCLUSIONS: The #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.

AB - BACKGROUND: Although 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.OBJECTIVE: This 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.METHODS: We 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.RESULTS: Participants 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.CONCLUSIONS: The #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.

KW - Humans

KW - Insulin/administration & dosage

KW - Female

KW - Male

KW - Middle Aged

KW - Adult

KW - Emotions

KW - Quality of Life/psychology

KW - Insulin Infusion Systems

KW - Narration

KW - Qualitative Research

KW - Diabetes Mellitus/psychology

KW - Aged

KW - challenges

KW - automated insulin delivery

KW - open source

KW - insulin pumps

KW - unmet needs

KW - community support

KW - type 1 diabetes

KW - impact

KW - diabetes technology

KW - users

KW - peer support

KW - emotional health

KW - mobile phone

KW - continuous glucose monitoring

KW - diabetes

KW - support

UR - https://www.scopus.com/pages/publications/85214480809

UR - https://www.jmir.org/2025/1/e72519

U2 - 10.2196/48406

DO - 10.2196/48406

M3 - Journal article

C2 - 39761553

SN - 1439-4456

VL - 27

SP - e48406

JO - Journal of Medical Internet Research

JF - Journal of Medical Internet Research

M1 - e48406

ER -

Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives

Abstract

Keywords

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