User and Healthcare Professional Perspectives on Do-It-Yourself Artificial Pancreas Systems: A Need for Guidelines

Shepard, Jaclyn A.; Breton, Marc D.; Nimri, Revital; Roberts, Joseph Tarquin Foulkes; Street, Timothy O.; Klonoff, David C.; Barnard-Kelly, Katharine

doi:10.1177/1932296820957728

Cited by 11 publications

(6 citation statements)

References 13 publications

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“…Of the 96 publications included in the scoping review,11 13 publications (14%) contained no information that was relevant to the objectives of this study and were therefore excluded. Thus, our analysis included 83 publications, reporting on 21 patient-driven innovations 18–100. The publications that were excluded concerned the two innovations ( DIY-APS 101–107 and PatientsLikeMe 108–113) that accounted for most of the publications included (n=49, 59%).…”

Section: Resultsmentioning

confidence: 99%

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

et al. 2023

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ObjectivesThe aim of this study was to gain a deeper understanding of the objectives and outcomes of patient-driven innovations that have been published in the scientific literature, focusing on (A) the unmet needs that patient-driven innovations address and (B) the outcomes for patients and healthcare that have been reported.MethodsWe performed an inductive qualitative content analysis of scientific publications that were included in a scoping review of patient-driven innovations, previously published by our research group. The review was limited to English language publications in peer-reviewed journals, published in the years 2008–2020.ResultsIn total, 83 publications covering 21 patient-driven innovations were included in the analysis. Most of the innovations were developed for use on an individual or community level without healthcare involvement. We created three categories of unmet needs that were addressed by these innovations: access to self-care support tools, open sharing of information and knowledge, and patient agency in self-care and healthcare decisions. Eighteen (22%) publications reported outcomes of patient-driven innovations. We created two categories of outcomes: impact on self-care, and impact on peer interaction and healthcare collaboration.ConclusionsThe patient-driven innovations illustrated a diversity of innovative approaches to facilitate patients’ and informal caregivers’ daily lives, interactions with peers and collaborations with healthcare. As our findings indicate, patients and informal caregivers are central stakeholders in driving healthcare development and research forward to meet the needs that matter to patients and informal caregivers. However, only few studies reported on outcomes of patient-driven innovations. To support wider implementation, more evaluation studies are needed, as well as research into regulatory approval processes, dissemination and governance of patient-driven innovations.

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Section: Resultsmentioning

confidence: 99%

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

et al. 2023

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“…The 20 identified innovations addressed the unmet needs of patients and family caregivers with diabetes (7 innovations, 46 publications18–63); cancer (1 innovation, 1 publication64); rare diseases (3 innovations, 5 publications65–69); gastrointestinal diseases (2 innovations, 4 publications70–73); disabilities (2 innovations, 3 publications74–76); Parkinson’s disease (2 innovations, 3 publications77–79) and mental illness (1 innovation, 2 publications80 81). There were also innovations targeting unmet needs of multiple conditions (2 innovations, 32 publications82–113).…”

Section: Resultsmentioning

confidence: 99%

Patient-driven innovations reported in peer-reviewed journals: a scoping review

et al. 2022

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BackgroundAwareness of patients’ innovative capabilities is increasing, but there is limited knowledge regarding the extent and nature of patient-driven innovations in the peer-reviewed literature.ObjectivesThe objective of the review was to answer the question: what is the nature and extent of patient-driven innovations published in peer-reviewed scientific journals?Eligibility criteriaWe used a broad definition of innovation to allow for a comprehensive review of different types of innovations and a narrow definition of ‘patient driven’ to focus on the role of patients and/or family caregivers. The search was limited to years 2008–2020.Sources of evidenceFour electronic databases (Medline (Ovid), Web of Science Core Collection, PsycINFO (Ovid) and Cinahl (Ebsco)) were searched in December 2020 for publications describing patient-driven innovations and complemented with snowball strategies.Charting methodsData from the included articles were extracted and categorised inductively.ResultsA total of 96 articles on 20 patient-driven innovations were included. The number of publications increased over time, with 69% of the articles published between 2016 and 2020. Author affiliations were exclusively in high income countries with 56% of first authors in North America and 36% in European countries. Among the 20 innovations reported, ‘Do-It-Yourself Artificial Pancreas System‘ and the online health network ‘PatientsLikeMe’, were the subject of half of the articles.ConclusionsPeer-reviewed publications on patient-driven innovations are increasing and we see an important opportunity for researchers and clinicians to support patient innovators’ research while being mindful of taking over the work of the innovators themselves.

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“…For children and adolescents specifically, the consensus group recommended that the child's welfare should always be considered by HCPs and caregivers who are setting up open-source AID for children, with the child's assent and engagement (12). Further research should investigate the experiences and thoughts of HCPs and particularly address the challenges of procuring necessary devices (insulin pumps, CGM) via prescription (12,39,(43)(44)(45)(46)(47).…”

Section: Differences By Education Level and Household Incomementioning

confidence: 99%

Barriers to Uptake of Open-Source Automated Insulin Delivery Systems: Analysis of Socioeconomic Factors and Perceived Challenges of Caregivers of Children and Adolescents With Type 1 Diabetes From the OPEN Survey

Huhndt

Chen

O’Donnell

et al. 2022

Front. Clin. Diabetes Healthc.

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BackgroundAs a treatment option for people living with diabetes, automated insulin delivery (AID) systems are becoming increasingly popular. The #WeAreNotWaiting community plays a crucial role in the provision and distribution of open-source AID technology. However, while a large percentage of children were early adopters of open-source AID, there are regional differences in adoption, which has prompted an investigation into the barriers perceived by caregivers of children with diabetes to creating open-source systems.MethodsThis is a retrospective, cross-sectional and multinational study conducted with caregivers of children and adolescents with diabetes, distributed across the online #WeAreNotWaiting online peer-support groups. Participants—specifically caregivers of children not using AID—responded to a web-based questionnaire concerning their perceived barriers to building and maintaining an open-source AID system.Results56 caregivers of children with diabetes, who were not using open-source AID at the time of data collection responded to the questionnaire. Respondents indicated that their major perceived barriers to building an open-source AID system were their limited technical skills (50%), a lack of support by medical professionals (39%), and therefore the concern with not being able to maintain an AID system (43%). However, barriers relating to confidence in open-source technologies/unapproved products and fear of digital technology taking control of diabetes were not perceived as significant enough to prevent non-users from initiating the use of an open-source AID system.ConclusionsThe results of this study elucidate some of the perceived barriers to uptake of open-source AID experienced by caregivers of children with diabetes. Reducing these barriers may improve the uptake of open-source AID technology for children and adolescents with diabetes. With the continuous development and wider dissemination of educational resources and guidance—for both aspiring users and their healthcare professionals—the adoption of open-source AID systems could be improved.

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User and Healthcare Professional Perspectives on Do-It-Yourself Artificial Pancreas Systems: A Need for Guidelines

Cited by 11 publications

References 13 publications

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

Patient-driven innovations reported in peer-reviewed journals: a scoping review

Barriers to Uptake of Open-Source Automated Insulin Delivery Systems: Analysis of Socioeconomic Factors and Perceived Challenges of Caregivers of Children and Adolescents With Type 1 Diabetes From the OPEN Survey

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