Search

PurposeThe COVID-19 pandemic has demonstrated the urgency of better chronic disease management and the importance of making it an integral part of the recovery agenda in Europe. This paper aims to explore the shift towards digital and integrated care systems in Europe.Design/methodology/approachIn this viewpoint paper the Expert Group for Integrated Care and Digital Health Europe (EGIDE) group argues that an orchestrated shift towards integrated care holds the solution to the chronic disease pandemic.FindingsThe development of integrated care cannot happen without shifting towards a digitalised healthcare system via large-scale initiatives like the European Health Data Space (EHDS) and the involvement of all stakeholders.Originality/valueThe EGIDE group has identified some foundational principles, which can guide the way to realise the full potential of the EHDS for integrated care and can support the involved stakeholders’ thinking.

BACKGROUND Digital innovations in health care have traditionally followed a top-down pathway, with manufacturers leading the design and production of technology-enabled solutions and those living with chronic conditions involved only as passive recipients of the end product. However, user-driven open-source initiatives in health care are becoming increasingly popular. An example is the growing movement of people with diabetes, who create their own “Do-It-Yourself Artificial Pancreas Systems” (DIYAPS). OBJECTIVE The overall aim of this study is to establish the empirical evidence base for the clinical effectiveness and quality-of-life benefits of DIYAPS and identify the challenges and possible solutions to enable their wider diffusion. METHODS A research program comprising 5 work packages will examine the outcomes and potential for scaling up DIYAPS solutions. Quantitative and qualitative methodologies will be used to examine clinical and self-reported outcome measures of DIYAPS users. The majority of members of the research team live with type 1 diabetes and are active DIYAPS users, making Outcomes of Patients’ Evidence With Novel, Do-It-Yourself Artificial Pancreas Technology (OPEN) a unique, user-driven research project. RESULTS This project has received funding from the European Commission’s Horizon 2020 Research and Innovation Program, under the Marie Skłodowska-Curie Action Research and Innovation Staff Exchange. Researchers with both academic and nonacademic backgrounds have been recruited to formulate research questions, drive the research process, and disseminate ongoing findings back to the DIYAPS community and other stakeholders. CONCLUSIONS The OPEN project is unique in that it is a truly patient- and user-led research project, which brings together an international, interdisciplinary, and intersectoral research group, comprising health care professionals, technical developers, biomedical and social scientists, the majority of whom are also living with diabetes. Thus, it directly addresses the core research and user needs of the DIYAPS movement. As a new model of cooperation, it will highlight how researchers in academia, industry, and the patient community can create patient-centric innovation and reduce disease burden together. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/15368

Objective: Little is known about why PwD leave traditional pathways and turn to DIY technology. This study aims to examine the motivations of Do-it-Yourself Artificial Pancreas System (DIYAPS) users and caregivers to build and maintain these systems. Methods: An online survey with 34 items was distributed to DIYAPS users and caregivers of children with DIYAPS through Facebook (“Looped” and regional subgroups) and Twitter (Diabetes Online Community). Results: 1058 participants from 34 countries responded to the survey. The majority were adult users (80.2%; 43% female; median age 41 years) with T1D (98.9%) for 25.2 years ±13.3. 19.8% were caregivers of children (47.4% female; median age 10 years) with T1D (99.4%) for 5.1 years ±3.9. With 10.1m ±17.6 on DIYAPS, HbA1c improved from 7.07% ±1.07 to 6.24% ±0.68 %. Time in Range improved from 63.21% ±16.27 to 83.07% ±10.11. Additional out-of-pocket costs of 712 USD/year were spent. Motivations to build a DIYAPS are shown in Fig.1. Conclusions: Improved glycemic control, need for an ‘autopilot’ and less acute and long-term complications were key motivations in both groups; as well as better sleep for caregivers. Users were also able to access and afford the required tools. These results may provide a better understanding of unmet needs of PwD and current challenges to uptake, in order to facilitate the involvement of patient-led and open source approaches in healthcare. Disclosure K. Braune: Advisory Panel; Self; Medtronic MiniMed, Inc. Speaker’s Bureau; Self; Dexcom, Inc. S. O’Donnell: None. B. Cleal: None. D.M. Lewis: Consultant; Self; Diabeloop SA, Roche Diabetes Care. A. Tappe: Consultant; Self; IME-DC GmbH. Employee; Self; Hi.health, Gruber-Debong GmbH. Speaker’s Bureau; Self; Dexcom, Inc., Roche Diabetes Care, Ypsomed AG. Other Relationship; Self; SOOIL Developments Co., Ltd. B. Hauck: Consultant; Self; Bayer AG, Eli Lilly and Company, LifeScan, Inc., Novo Nordisk A/S, Roche Diabetes Care, Roche Pharma. I. Willaing: None. R. Scibilia: Speaker’s Bureau; Self; Roche Diabetes Care. E. Rowley: None. W. Ko: None. G. Doyle: None. T.C. Skinner: None. K. Raile: Advisory Panel; Self; Abbott, Lilly Diabetes. Funding European Union

There is currently a wave of interest in Do-it-Yourself Artificial Pancreas Systems (DIYAPS) but knowledge about how the use of these systems impacts on the lives of those that develop and use them remains limited. Until now, only a select few have been able to give voice to their experiences in a research context. In this study we present data that addresses this shortcoming, detailing the lived experiences of people using DIYAPS in an extensive and diverse way. An online survey with 34 items was distributed to DIYAPS users recruited through the Facebook groups “Looped” (and regional sub-groups) and Twitter pages of the Diabetes Online Community (DOC). Participants were posed two open-ended questions in the survey, where personal DIY APS stories were garnered; including knowledge acquisition, decision-making, support and emotional aspects in the initiation of DIY APS, perceived changes in clinical and quality of life (QoL) outcomes after initiation and difficulties encountered in the process. All answers were analysed using thematic content analysis. In total, 886 adults responded to the survey and there were a combined 656 responses to the two open-ended items. Knowledge of DIYAPS was largely obtained via exposure to the communication fora that constitute the DOC. The DOC was also a primary source of practical and emotional support. Dramatic improvements in clinical and QoL outcomes were consistently reported. The emotional impact on everyday life was overwhelmingly positive. Acquisition of the requisite devices to initiate DIYAPS was sometimes problematic. The extensive testimony from users of DIYAPS acquired in this study provides new insights regarding the contours of this evolving phenomenon, highlighting factors inspiring people to adopt such solutions and underlining the transformative impact effective closed-loop systems bring to bear on the everyday lives of people with diabetes. Disclosure B. Cleal: None. K. Braune: Advisory Panel; Self; Medtronic MiniMed, Inc. Speaker’s Bureau; Self; Dexcom, Inc. S. O’Donnell: None. B. Hauck: Consultant; Self; Bayer AG, Eli Lilly and Company, LifeScan, Inc., Novo Nordisk A/S, Roche Diabetes Care, Roche Pharma. D.M. Lewis: Consultant; Self; Diabeloop SA, Roche Diabetes Care. T.C. Skinner: None. K. Raile: Advisory Panel; Self; Abbott, Lilly Diabetes.

BACKGROUND Patient-driven initiatives have made uptake of Do-it-Yourself Artificial Pancreas Systems (DIYAPS) increasingly popular amongst people with diabetes of all ages. Observational studies show improvements in glycemic control and quality of life amongst adults. However, there remains a lack of research examining experiences of children and adolescents with DIYAPS in everyday life and their social context. OBJECTIVE This study assesses self-reported clinical outcomes of the pediatric population using DIYAPS in real-world use. METHODS An online survey was distributed to caregivers, assessing HbA1c and Time in Range (TIR) before and after, and problems during DIYAPS use. RESULTS 209 caregivers from 21 countries responded. Children were 47.4% female with a median age of 10y; a mean diabetes duration of 5.1y ±3.9 and 10.3m ±10.0 experience with DIYAPS. Clinical outcomes improved significantly, including HbA1c (from 6.91% ±0.88 to 6.27% ±0.67; P CONCLUSIONS Improved glycemic outcomes were found across all pediatric age groups including adolescents and very young children. These findings are in line with clinical trial results from commercially developed closed-loop systems. CLINICALTRIAL The study was approved by the Charité ethics committee (EA2/140/18).

Introduction Integrated Care Pathways (ICPs) are a method for the mutual decision-making and organization of care for a well-defined group of patients during a well-defined period. The aim of a care pathway is to enhance the quality of care by improving patient outcomes, promoting patient safety, increasing patient satisfaction, and optimizing the use of resources. To describe this concept, different names are used, e.g. care pathways and integrated care pathways. Modern information technologies (IT) can support ICPs by enabling patient empowerment, better management, and the monitoring of care provided by multidisciplinary teams. This study analyses ICPs across Europe, identifying commonalities and success factors to establish good practices for IT-supported ICPs in diabetes care. Methods A mixed-method approach was applied, combining desk research on 24 projects from the European Innovation Partnership on Active and Healthy Ageing (EIP on AHA) with follow-up interviews of project participants, and a non-systematic literature review. We applied a Delphi technique to select process and outcome indicators, derived from different literature sources which were compiled and applied for the identification of successful good practices. Results Desk research identified sixteen projects featuring IT-supported ICPs, mostly derived from the EIP on AHA, as good practices based on our criteria. Follow-up interviews were then conducted with representatives from 9 of the 16 projects to gather information not publicly available and understand how these projects were meeting the identified criteria. In parallel, the non-systematic literature review of 434 PubMed search results revealed a total of eight relevant projects. On the basis of the selected EIP on AHA project data and non-systematic literature review, no commonalities with regard to defined process or outcome indicators could be identified through our approach. Conversely, the research produced a heterogeneous picture in all aspects of the projects’ indicators. Data from desk research and follow-up interviews partly lacked information on outcome and performance, which limited the comparison between practices. Conclusion Applying a comprehensive set of indicators in a multi-method approach to assess the projects included in this research study did not reveal any obvious commonalities which might serve as a blueprint for future IT-supported ICP projects. Instead, an unexpected high degree of heterogeneity was observed, that may reflect diverse local implementation requirements e.g. specificities of the local healthcare system, local regulations, or preexisting structures used for the project setup. Improving the definition of and reporting on project outcomes could help advance research on and implementation of effective integrated care solutions for chronic disease management across Europe.