How Adults with Type 1 Diabetes Are Navigating the Challenges of Open-Source Artificial Pancreas Systems: A Qualitative Study

Schipp, Jasmine; Skinner, Timothy; Holloway, Edith; Scibilia, Renza; Langstrup, Henriette; Speight, Jane; Hendrieckx, Christel

doi:10.1089/dia.2020.0652

Cited by 23 publications

(30 citation statements)

References 26 publications

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“…Again, based on clinical experience those who opt to use DIYAPS tend to be a highly motivated, technology savvy group. Users highlighted the need for technical ability and support from the wider community of users, echoing similar recently reported findings 26,27 …”

Section: Discussionsupporting

confidence: 72%

Safety and effectiveness of do‐it‐yourself artificial pancreas system compared with continuous subcutaneous insulin infusions in combination with free style libre in people with type 1 diabetes

et al. 2022

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Aims:The use of do-it-yourself artificial pancreas systems (DIYAPS) among people with type 1 diabetes is increasing. At present, it is unclear how DIYAPS compares with other technologies such as FreeStyle Libre (FSL) and continuous subcutaneous insulin infusion (CSII).The aim of this analysis is to compare safety, effectiveness and quality-of-life outcomes of DIYAPS use with the addition of FSL to CSII.Method: Data from two large UK hospitals were extracted from the Association of British Clinical Diabetologists (ABCD) DIYAPS and FSL audits. Outcomes included HbA 1c , glucose TBR (time-below-range), TIR (time-in-range), Diabetes Distress Score (DDS), and Gold hypoglycaemia score. Any adverse events were noted. Changes at follow-up were assessed using paired t-tests and ANOVA in Stata; TIR/TBR at follow-up assessed using unpaired t-tests; chi-square tests assessed the change in frequency of health utilisation (e.g. hospital admissions). Results: DIYAPS (n = 35) and FSL+CSII (n = 149) users, with median followup duration of 1.4 (IQR 0.8-2.1) and 1.3 (IQR 0.7-1.8) years, respectively, were included. HbA 1c with DIYAPS use changed by −10 mmol/mol [0.9%] (p < 0.001, 95% CI 5, 14 [0.5, 1.3%]) significantly lower (p < 0.001) than in the FSL+CSII group −3 mmol/mol [0.25%] (p < 0.001, 95% CI 1, 4 [0.1, 0.4%]). TIR was higher and TBR was lower in the DIYAPS group. Adverse events were rare in both groups and no significant differences were observed in the frequency of healthcare utilisation. Conclusion:DIYAPS use was associated with a lower HbA 1c levels, higher TIR and lower TBR compared with FSL+CSII. There was no significant increase in adverse events, although this should be interpreted cautiously given the low numbers of users. Full results from the ABCD DIYAPS audit are awaited.How to cite this article: Patel R, Crabtree TSJ, Taylor N, et al. Safety and effectiveness of do-ityourself artificial pancreas system compared with continuous subcutaneous insulin infusions in combination with free style libre in people with type 1 diabetes.

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Section: Discussionsupporting

confidence: 72%

Safety and effectiveness of do‐it‐yourself artificial pancreas system compared with continuous subcutaneous insulin infusions in combination with free style libre in people with type 1 diabetes

et al. 2022

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“…Open‐source APS are unapproved and unregulated, and consequently those who choose to build and use an open‐source APS do so at their own risk 2 . However, as we have reported previously, people using these technologies state that they use strategies to manage these risks, and report numerous benefits that outweigh the challenges and risks of using an open‐source APS 3 . The creation of open‐source APS has been described as a ‘leading example of the democratization of medicine’ and heralded as ‘the end of the paternalistic era of medicine’ 4 …”

Section: Introductionmentioning

confidence: 73%

“…Recruitment was stopped at 23 participants as it was within our target sample (20–30 participants), we had found re‐occurring themes (saturation), and recruitment had slowed. Detailed participant characteristics are reported elsewhere 3 …”

Section: Resultsmentioning

confidence: 99%

“…Detailed participant characteristics are reported elsewhere. 3 Participants anticipated that commercial HCL devices would become much more common in the future. They hoped that this would provide more choices for people with type 1 diabetes.…”

Section: Resultsmentioning

confidence: 99%

“…2 However, as we have reported previously, people using these technologies state that they use strategies to manage these risks, and report numerous benefits that outweigh the challenges and risks of using an open-source APS. 3 The creation of open-source APS has been described as a 'leading example of the democratization of medicine' and heralded as 'the end of the paternalistic era of medicine'. 4 It has been suggested that the increase of commercially available HCL may decrease the uptake of open-source APS, whereas others feel that this is not the case.…”

Section: Introductionmentioning

confidence: 99%

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‘We’re all on the same team’. Perspectives on the future of artificial pancreas systems by adults in Australia with type 1 diabetes using open‐source technologies: A qualitative study

et al. 2021

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Aims An emerging group of people with type 1 diabetes are not waiting for commercial solutions, choosing to manage their condition with open‐source artificial pancreas systems (APS). Our aim was to explore their perspectives on the future of APS. Methods Semi‐structured telephone interviews were conducted (in Australia, October 2018 to January 2019) with 23 adults with type 1 diabetes currently using open‐source APS. Interviews were recorded, transcribed and analysed thematically. Results Participants described five key features of open‐source APS they value: compatibility, user‐led design, customisability, ability to evolve faster and community‐driven. They attributed the success of the open‐source APS movement to benefits they derive from these features: choice, solutions that meet their needs, ownership, staying one step ahead and real‐time support. They expressed hope that future commercial products and healthcare would benefit from their learnings and from collaboration with the open‐source APS community. Conclusions Participants believed that there will always be a place for the open‐source community. It will continue to build on and advance commercial products, respond to user needs, offering a higher degree of control and customisation than afforded by commercial products and generating optimism for the future. Participants desired that future commercial diabetes technologies would be inspired by the open‐source community and developed collaboratively with people with diabetes.

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Looping for (Self)Care—Personal Digital Health Technology and Algorithmic Systems

Langstrup,

Jansky

2024

Reframing Algorithms

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How Adults with Type 1 Diabetes Are Navigating the Challenges of Open-Source Artificial Pancreas Systems: A Qualitative Study

Cited by 23 publications

References 26 publications

Safety and effectiveness of do‐it‐yourself artificial pancreas system compared with continuous subcutaneous insulin infusions in combination with free style libre in people with type 1 diabetes

Safety and effectiveness of do‐it‐yourself artificial pancreas system compared with continuous subcutaneous insulin infusions in combination with free style libre in people with type 1 diabetes

‘We’re all on the same team’. Perspectives on the future of artificial pancreas systems by adults in Australia with type 1 diabetes using open‐source technologies: A qualitative study

Looping for (Self)Care—Personal Digital Health Technology and Algorithmic Systems

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