Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey

Katarina Braune; Katarzyna Anna Gajewska; Axel Thieffry; Dana Michelle Lewis; Timothée Froment; Shane O'Donnell; Jane Speight; Christel Hendrieckx; Jasmine Schipp; Timothy Skinner; Henriette Langstrup; Adrian Tappe; Klemens Raile; Bryan Cleal

doi:10.2196/25409

Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey

Katarina Braune, Katarzyna Anna Gajewska, Axel Thieffry, Dana Michelle Lewis, Timothée Froment, Shane O'Donnell, Jane Speight, Christel Hendrieckx, Jasmine Schipp, Timothy Skinner, Henriette Langstrup, Adrian Tappe, Klemens Raile, Bryan Cleal

Steno Diabetes Center Copenhagen

62 Citations (Scopus)

Abstract

BACKGROUND: Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyperglycemia and hypoglycemia but are not universally available, accessible, or affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular.

OBJECTIVE: This study aims to investigate the motivations for which people with diabetes (types 1, 2, and other) or their caregivers decide to build and use a personalized open-source AID.

METHODS: A cross-sectional web-based survey was conducted to assess personal motivations and associated self-reported clinical outcomes.

RESULTS: Of 897 participants from 35 countries, 80.5% (722) were adults with diabetes and 19.5% (175) were caregivers of children with diabetes. Primary motivations to commence open-source AID included improving glycemic outcomes (476/509 adults, 93.5%, and 95/100 caregivers, 95%), reducing acute (443/508 adults, 87.2%, and 96/100 caregivers, 96%) and long-term (421/505 adults, 83.3%, and 91/100 caregivers, 91%) complication risk, interacting less frequently with diabetes technology (413/509 adults, 81.1%; 86/100 caregivers, 86%), improving their or child's sleep quality (364/508 adults, 71.6%, and 80/100 caregivers, 80%), increasing their or child's life expectancy (381/507 adults, 75.1%, and 84/100 caregivers, 84%), lack of commercially available AID systems (359/507 adults, 70.8%, and 79/99 caregivers, 80%), and unachieved therapy goals with available therapy options (348/509 adults, 68.4%, and 69/100 caregivers, 69%). Improving their own sleep quality was an almost universal motivator for caregivers (94/100, 94%). Significant improvements, independent of age and gender, were observed in self-reported glycated hemoglobin (HbA1c), 7.14% (SD 1.13%; 54.5 mmol/mol, SD 12.4) to 6.24% (SD 0.64%; 44.7 mmol/mol, SD 7.0; P<.001), and time in range (62.96%, SD 16.18%, to 80.34%, SD 9.41%; P<.001).

CONCLUSIONS: These results highlight the unmet needs of people with diabetes, provide new insights into the evolving phenomenon of open-source AID technology, and indicate improved clinical outcomes. This study may inform health care professionals and policy makers about the opportunities provided by open-source AID systems.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/15368.

Original language	English
Article number	e25409
Journal	Journal of Medical Internet Research
Volume	23
Issue number	6
Pages (from-to)	e25409
ISSN	1439-4456
DOIs	https://doi.org/10.2196/25409
Publication status	Published - 7 Jun 2021

Keywords

Artificial pancreas
Automated insulin delivery
Diabetes
Diabetes technology
Digital health
Do-it-yourself
Medical device regulation
Mobile health
Motivation
Online communities
Open-source
Patient-led
Peer support
Sleep quality
User-led

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10.2196/25409

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Braune, K., Gajewska, K. A., Thieffry, A., Lewis, D. M., Froment, T., O'Donnell, S., Speight, J., Hendrieckx, C., Schipp, J., Skinner, T., Langstrup, H., Tappe, A., Raile, K., & Cleal, B. (2021). Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey. Journal of Medical Internet Research, 23(6), e25409. Article e25409. https://doi.org/10.2196/25409

Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey. / Braune, Katarina; Gajewska, Katarzyna Anna; Thieffry, Axel et al.
In: Journal of Medical Internet Research, Vol. 23, No. 6, e25409, 07.06.2021, p. e25409.

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

Braune, K, Gajewska, KA, Thieffry, A, Lewis, DM, Froment, T, O'Donnell, S, Speight, J, Hendrieckx, C, Schipp, J, Skinner, T, Langstrup, H, Tappe, A, Raile, K & Cleal, B 2021, 'Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey', Journal of Medical Internet Research, vol. 23, no. 6, e25409, pp. e25409. https://doi.org/10.2196/25409

@article{ecfb9cfd3c76426aac5b96baa4034151,

title = "Why \#WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey",

abstract = "BACKGROUND: Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyperglycemia and hypoglycemia but are not universally available, accessible, or affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular.OBJECTIVE: This study aims to investigate the motivations for which people with diabetes (types 1, 2, and other) or their caregivers decide to build and use a personalized open-source AID.METHODS: A cross-sectional web-based survey was conducted to assess personal motivations and associated self-reported clinical outcomes.RESULTS: Of 897 participants from 35 countries, 80.5\% (722) were adults with diabetes and 19.5\% (175) were caregivers of children with diabetes. Primary motivations to commence open-source AID included improving glycemic outcomes (476/509 adults, 93.5\%, and 95/100 caregivers, 95\%), reducing acute (443/508 adults, 87.2\%, and 96/100 caregivers, 96\%) and long-term (421/505 adults, 83.3\%, and 91/100 caregivers, 91\%) complication risk, interacting less frequently with diabetes technology (413/509 adults, 81.1\%; 86/100 caregivers, 86\%), improving their or child's sleep quality (364/508 adults, 71.6\%, and 80/100 caregivers, 80\%), increasing their or child's life expectancy (381/507 adults, 75.1\%, and 84/100 caregivers, 84\%), lack of commercially available AID systems (359/507 adults, 70.8\%, and 79/99 caregivers, 80\%), and unachieved therapy goals with available therapy options (348/509 adults, 68.4\%, and 69/100 caregivers, 69\%). Improving their own sleep quality was an almost universal motivator for caregivers (94/100, 94\%). Significant improvements, independent of age and gender, were observed in self-reported glycated hemoglobin (HbA1c), 7.14\% (SD 1.13\%; 54.5 mmol/mol, SD 12.4) to 6.24\% (SD 0.64\%; 44.7 mmol/mol, SD 7.0; P<.001), and time in range (62.96\%, SD 16.18\%, to 80.34\%, SD 9.41\%; P<.001).CONCLUSIONS: These results highlight the unmet needs of people with diabetes, provide new insights into the evolving phenomenon of open-source AID technology, and indicate improved clinical outcomes. This study may inform health care professionals and policy makers about the opportunities provided by open-source AID systems.INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/15368.",

keywords = "Artificial pancreas, Automated insulin delivery, Diabetes, Diabetes technology, Digital health, Do-it-yourself, Medical device regulation, Mobile health, Motivation, Online communities, Open-source, Patient-led, Peer support, Sleep quality, User-led",

author = "Katarina Braune and Gajewska, \{Katarzyna Anna\} and Axel Thieffry and Lewis, \{Dana Michelle\} and Timoth{\'e}e Froment and Shane O'Donnell and Jane Speight and Christel Hendrieckx and Jasmine Schipp and Timothy Skinner and Henriette Langstrup and Adrian Tappe and Klemens Raile and Bryan Cleal",

note = "{\textcopyright}Katarina Braune, Katarzyna Anna Gajewska, Axel Thieffry, Dana Michelle Lewis, Timoth{\'e}e Froment, Shane O'Donnell, Jane Speight, Christel Hendrieckx, Jasmine Schipp, Timothy Skinner, Henriette Langstrup, Adrian Tappe, Klemens Raile, Bryan Cleal. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 07.06.2021.",

year = "2021",

month = jun,

day = "7",

doi = "10.2196/25409",

language = "English",

volume = "23",

pages = "e25409",

journal = "Journal of Medical Internet Research",

issn = "1439-4456",

publisher = "JMIR Publications Inc.",

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TY - JOUR

T1 - Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems

T2 - Multinational Survey

AU - Braune, Katarina

AU - Gajewska, Katarzyna Anna

AU - Thieffry, Axel

AU - Lewis, Dana Michelle

AU - Froment, Timothée

AU - O'Donnell, Shane

AU - Speight, Jane

AU - Hendrieckx, Christel

AU - Schipp, Jasmine

AU - Skinner, Timothy

AU - Langstrup, Henriette

AU - Tappe, Adrian

AU - Raile, Klemens

AU - Cleal, Bryan

N1 - ©Katarina Braune, Katarzyna Anna Gajewska, Axel Thieffry, Dana Michelle Lewis, Timothée Froment, Shane O'Donnell, Jane Speight, Christel Hendrieckx, Jasmine Schipp, Timothy Skinner, Henriette Langstrup, Adrian Tappe, Klemens Raile, Bryan Cleal. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 07.06.2021.

PY - 2021/6/7

Y1 - 2021/6/7

N2 - BACKGROUND: Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyperglycemia and hypoglycemia but are not universally available, accessible, or affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular.OBJECTIVE: This study aims to investigate the motivations for which people with diabetes (types 1, 2, and other) or their caregivers decide to build and use a personalized open-source AID.METHODS: A cross-sectional web-based survey was conducted to assess personal motivations and associated self-reported clinical outcomes.RESULTS: Of 897 participants from 35 countries, 80.5% (722) were adults with diabetes and 19.5% (175) were caregivers of children with diabetes. Primary motivations to commence open-source AID included improving glycemic outcomes (476/509 adults, 93.5%, and 95/100 caregivers, 95%), reducing acute (443/508 adults, 87.2%, and 96/100 caregivers, 96%) and long-term (421/505 adults, 83.3%, and 91/100 caregivers, 91%) complication risk, interacting less frequently with diabetes technology (413/509 adults, 81.1%; 86/100 caregivers, 86%), improving their or child's sleep quality (364/508 adults, 71.6%, and 80/100 caregivers, 80%), increasing their or child's life expectancy (381/507 adults, 75.1%, and 84/100 caregivers, 84%), lack of commercially available AID systems (359/507 adults, 70.8%, and 79/99 caregivers, 80%), and unachieved therapy goals with available therapy options (348/509 adults, 68.4%, and 69/100 caregivers, 69%). Improving their own sleep quality was an almost universal motivator for caregivers (94/100, 94%). Significant improvements, independent of age and gender, were observed in self-reported glycated hemoglobin (HbA1c), 7.14% (SD 1.13%; 54.5 mmol/mol, SD 12.4) to 6.24% (SD 0.64%; 44.7 mmol/mol, SD 7.0; P<.001), and time in range (62.96%, SD 16.18%, to 80.34%, SD 9.41%; P<.001).CONCLUSIONS: These results highlight the unmet needs of people with diabetes, provide new insights into the evolving phenomenon of open-source AID technology, and indicate improved clinical outcomes. This study may inform health care professionals and policy makers about the opportunities provided by open-source AID systems.INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/15368.

AB - BACKGROUND: Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyperglycemia and hypoglycemia but are not universally available, accessible, or affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular.OBJECTIVE: This study aims to investigate the motivations for which people with diabetes (types 1, 2, and other) or their caregivers decide to build and use a personalized open-source AID.METHODS: A cross-sectional web-based survey was conducted to assess personal motivations and associated self-reported clinical outcomes.RESULTS: Of 897 participants from 35 countries, 80.5% (722) were adults with diabetes and 19.5% (175) were caregivers of children with diabetes. Primary motivations to commence open-source AID included improving glycemic outcomes (476/509 adults, 93.5%, and 95/100 caregivers, 95%), reducing acute (443/508 adults, 87.2%, and 96/100 caregivers, 96%) and long-term (421/505 adults, 83.3%, and 91/100 caregivers, 91%) complication risk, interacting less frequently with diabetes technology (413/509 adults, 81.1%; 86/100 caregivers, 86%), improving their or child's sleep quality (364/508 adults, 71.6%, and 80/100 caregivers, 80%), increasing their or child's life expectancy (381/507 adults, 75.1%, and 84/100 caregivers, 84%), lack of commercially available AID systems (359/507 adults, 70.8%, and 79/99 caregivers, 80%), and unachieved therapy goals with available therapy options (348/509 adults, 68.4%, and 69/100 caregivers, 69%). Improving their own sleep quality was an almost universal motivator for caregivers (94/100, 94%). Significant improvements, independent of age and gender, were observed in self-reported glycated hemoglobin (HbA1c), 7.14% (SD 1.13%; 54.5 mmol/mol, SD 12.4) to 6.24% (SD 0.64%; 44.7 mmol/mol, SD 7.0; P<.001), and time in range (62.96%, SD 16.18%, to 80.34%, SD 9.41%; P<.001).CONCLUSIONS: These results highlight the unmet needs of people with diabetes, provide new insights into the evolving phenomenon of open-source AID technology, and indicate improved clinical outcomes. This study may inform health care professionals and policy makers about the opportunities provided by open-source AID systems.INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/15368.

KW - Artificial pancreas

KW - Automated insulin delivery

KW - Diabetes

KW - Diabetes technology

KW - Digital health

KW - Do-it-yourself

KW - Medical device regulation

KW - Mobile health

KW - Motivation

KW - Online communities

KW - Open-source

KW - Patient-led

KW - Peer support

KW - Sleep quality

KW - User-led

UR - https://www.scopus.com/pages/publications/85107833226

U2 - 10.2196/25409

DO - 10.2196/25409

M3 - Journal article

C2 - 34096874

SN - 1439-4456

VL - 23

SP - e25409

JO - Journal of Medical Internet Research

JF - Journal of Medical Internet Research

IS - 6

M1 - e25409

ER -

Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey

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