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O'Donnell, Shane
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O'Donnell, Shane
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O'Donnell, Shane
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- PublicationOpen-source Web Portal for Managing Self-reported Data and Real-world Data Donation in Diabetes Research: Platform Feasibility Study(JMIR Publications, 2022-03-31)
; ; ; ; ; ; Background: People with diabetes and their support networks have developed open-source automated insulin delivery systems to help manage their diabetes therapy, as well as to improve their quality of life and glycemic outcomes. Under the hashtag #WeAreNotWaiting, a wealth of knowledge and real-world data have been generated by users of these systems but have been left largely untapped by research; opportunities for such multimodal studies remain open. Objective: We aimed to evaluate the feasibility of several aspects of open-source automated insulin delivery systems including challenges related to data management and security across multiple disparate web-based platforms and challenges related to implementing follow-up studies. Methods: We developed a mixed methods study to collect questionnaire responses and anonymized diabetes data donated by participants-which included adults and children with diabetes and their partners or caregivers recruited through multiple diabetes online communities. We managed both front-end participant interactions and back-end data management with our web portal (called the Gateway). Participant questionnaire data from electronic data capture (REDCap) and personal device data aggregation (Open Humans) platforms were pseudonymously and securely linked and stored within a custom-built database that used both open-source and commercial software. Participants were later given the option to include their health care providers in the study to validate their questionnaire responses; the database architecture was designed specifically with this kind of extensibility in mind. Results: Of 1052 visitors to the study landing page, 930 participated and completed at least one questionnaire. After the implementation of health care professional validation of self-reported clinical outcomes to the study, an additional 164 individuals visited the landing page, with 142 completing at least one questionnaire. Of the optional study elements, 7 participant-health care professional dyads participated in the survey, and 97 participants who completed the survey donated their anonymized medical device data. Conclusions: The platform was accessible to participants while maintaining compliance with data regulations. The Gateway formalized a system of automated data matching between multiple data sets, which was a major benefit to researchers. Scalability of the platform was demonstrated with the later addition of self-reported data validation. This study demonstrated the feasibility of custom software solutions in addressing complex study designs. The Gateway portal code has been made available open-source and can be leveraged by other research groups.48Scopus© Citations 2 - PublicationEstablishing consensus on key public health indicators for the monitoring and evaluating childhood obesity interventions: a Delphi panel study(Springer Nature, 2020-11-17)
; ; ; ; ; ; Background: Childhood obesity is influenced by myriad individual, societal and environmental factors that are not typically reflected in current interventions. Socio-ecological conditions evolve and require ongoing monitoring in terms of assessing their influence on child health. The aim of this study was to identify and prioritise indicators deemed relevant by public health authorities for monitoring and evaluating childhood obesity interventions. Method: A three-round Delphi Panel composed of experts from regions across Europe, with a remit in childhood obesity intervention, were asked to identify indicators that were a priority in their efforts to address childhood obesity in their respective jurisdictions. In Round 1, 16 panellists answered a series of open-ended questions to identify the most relevant indicators concerning the evaluation and subsequent monitoring of interventions addressing childhood obesity, focusing on three main domains: built environments, dietary environments, and health inequalities. In Rounds 2 and 3, panellists rated the importance of each of the identified indicators within these domains, and the responses were then analysed quantitatively. Results: Twenty-seven expert panellists were invited to participate in the study. Of these, 16/27 completed round 1 (5 9% response rate), 14/16 completed round 2 (87.5% response rate), and 8/14 completed the third and final round (57% response rate). Consensus (defined as > 70% agreement) was reached on a total of 45 of the 87 indicators (49%) across three primary domains (built and dietary environments and health inequalities), with 100% consensus reached for 5 of these indicators (6%). Conclusion: Forty-five potential indicators were identified, pertaining primarily to the dietary environment, built environment and health inequalities. These results have important implications more widely for evaluating interventions aimed at childhood obesity reduction and prevention.49Scopus© Citations 6 - PublicationBarriers 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 SurveyAs 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.Methods: This 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. Results: 56 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. Conclusions: The 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.
76Scopus© Citations 2 - PublicationCosts and underuse of insulin and diabetes supplies: Findings from the 2020 T1 International cross-sectional web-based survey(Elsevier, 2021-09)
; ; ; ; ; Aims: To investigate self-reported out-of-pocket expenses (OoPE) associated with insulin and diabetes supplies for people living with type 1 diabetes (T1D) worldwide. Methods: A web-based, cross-sectional survey was conducted from August to December 2020. The analysis included comparisons between responses from countries with no, partial, and full healthcare coverage. Results: 1,066 participants from 64 countries took part in the study. ~25% of respondents reported having underused insulin at least once within the last year due to perceived cost. A significant correlation was observed between OoPEs and reported household income for respondents with partial healthcare coverage. 63.2% of participants reported disruption of insulin supplies and 25.3% reported an increase of prices related to the COVID-19 pandemic. Conclusions: This study confirms previous reports of ~25% of people in the United States with T1D using less insulin and/or fewer supplies at least once in the last year due to cost, a trend associated with the extent of healthcare coverage. Similar trends were observed in some middle/low income countries. Moreover, patients reported an increase in insulin prices and disruption of supplies during the COVID-19 pandemic. This study highlights the importance of self-reported OoPEs and its association with underuse/rationing of insulin.135Scopus© Citations 11 - PublicationBigO: A public health decision support system for measuring obesogenic behaviors of children in relation to their local environment(2020-07-24)
; ; ; ; ; ; ; Obesity is a complex disease and its prevalence depends on multiple factors related to the local socioeconomic, cultural and urban context of individuals. Many obesity prevention strategies and policies, however, are horizontal measures that do not depend on context-specific evidence. In this paper we present an overview of BigO (http://bigoprogram.eu), a system designed to collect objective behavioral data from children and adolescent populations as well as their environment in order to support public health authorities in formulating effective, context-specific policies and interventions addressing childhood obesity. We present an overview of the data acquisition, indicator extraction, data exploration and analysis components of the BigO system, as well as an account of its preliminary pilot application in 33 schools and 2 clinics in four European countries, involving over 4,200 participants.593Scopus© Citations 9 - PublicationMobile Health Apps in Pediatric Obesity Treatment: Process Outcomes From a Feasibility Study of a Multicomponent Intervention(JMIR, 2020-07)
; ; ; ; ; ; Background: Multicomponent family interventions underline current best practice in childhood obesity treatment. Mobilehealth (mHealth) adjuncts that address eating and physical activity behaviors have shown promise in clinical studies.Objective: This study aimed to describe process methods for applying an mHealth intervention to reduce the rate of eating andmonitor physical activity among children with obesity.Methods: The study protocol was designed to incorporate 2 mHealth apps as an adjunct to usual care treatment for obesity.Children and adolescents (aged 9-16 years) with obesity (BMI ≥98th centile) were recruited in person from a weight managementservice at a tertiary health care center in the Republic of Ireland. Eligible participants and their parents received informationleaflets, and informed consent and assent were signed. Participants completed 2 weeks of baseline testing, including behavioraland quality of life questionnaires, anthropometry, rate of eating by Mandolean, and physical activity level using a smart watchand the myBigO smartphone app. Thereafter, participants were randomized to the (1) intervention (usual clinical care+Mandoleantraining to reduce the rate of eating) or (2) control (usual clinical care) groups. Gender and age group (9.0-12.9 years and 13.0-16.9years) stratifications were applied. At the end of a 4-week treatment period, participants repeated the 2-week testing period.Process evaluation measures included recruitment, study retention, fidelity parameters, acceptability, and user satisfaction.Results: A total of 20 participants were enrolled in the study. A web-based randomization system assigned 8 participants to theintervention group and 12 participants to the control group. Attrition rates were higher among the participants in the interventiongroup (5/8, 63%) than those in the control group (3/12, 25%). Intervention participants undertook a median of 1.0 training mealusing Mandolean (25th centile 0, 75th centile 9.3), which represented 19.2% of planned intervention exposure. Only 50% (9/18)of participants with smart watches logged physical activity data. Significant differences in psychosocial profile were observedat baseline between the groups. The Child Behavior Checklist (CBCL) mean total score was 71.7 (SD 3.1) in the interventiongroup vs 57.6 (SD 6.6) in the control group, t-test P<.001, and also different among those who completed the planned protocolcompared with those who withdrew early (CBCL mean total score 59.0, SD 9.3, vs 67.9, SD 5.6, respectively; t-test P=.04). Conclusions: A high early attrition rate was a key barrier to full study implementation. Perceived task burden in combination with behavioral issues may have contributed to attrition. Low exposure to the experimental intervention was explained by poor acceptability of Mandolean as a home-based tool for treatment. Self-monitoring using myBigO and the smartwatch was acceptable among this cohort. Further technical and usability studies are needed to improve adherence in our patient group in the tertiary setting.168Scopus© Citations 18 - PublicationBarriers to uptake of Open-Source automated insulin delivery Systems: Analysis of socioeconomic factors and perceived challenges of adults with type 1 diabetes from the OPEN surveyAims: Social and technical trends are empowering people with diabetes to co-create or self-develop medical devices and treatments to address their unmet healthcare needs, for example, open-source automated insulin delivery (AID) systems. This study aims to investigate the perceived barriers towards adoption and maintaining of open-source AID systems. Methods: This is a multinational study based on a cross-sectional, retrospective web-based survey of non-users of open-source AID. Participants (n = 129) with type 1 diabetes from 31 countries were recruited online to elicit their perceived barriers towards building and maintaining of an open-source AID system. Results: Sourcing the necessary components, lack of confidence in one's own technology knowledge and skills, perceived time and energy required to build a system, and fear of losing healthcare provider support appear to be major barriers towards the uptake of open-source AID. Conclusions: This study identified a range of structural and individual-level barriers to uptake of open-source AID. Some of these individual-level barriers may be overcome over time through the peer support of the DIY online community as well as greater acceptance of open-source innovation among healthcare professionals. The findings have important implications for understanding the possible wider diffusion of open-source diabetes technology solutions in the future.
51Scopus© Citations 4 - PublicationMobile health (mHealth) applications for children in treatment for obesity: A randomised feasibility study(2019-10-18)
; ; ; ; ; ; ; The W82GO Service delivers evidence-based obesity treatment to families of children and adolescents with obesity (BMI>98th percentile) and has a positive impact on obesity.564