User Needs in the Development of a Health App Ecosystem for Self-Management of Cystic Fibrosis: User-Centered Development Approach

Background: Digital self-management in cystic fibrosis (CF) is foreseen as a means toward better understanding of the disease and its treatment and better adherence to the treatment. Mobile apps hold the potential to provide access to information, motivate, and strengthen compliance. However, to deliver high-quality apps, the development should be based on thorough knowledge about user needs. Empirical research on the user-centered development of mobile apps for health care is, however, still limited. Objective: The aim of this research is to develop and evaluate an app ecosystem for self-management in CF. It targets not only those directly affected by CF but also parents and health care professionals involved in the treatment. This paper covers the first step of the design process that aims to analyze the context and the user requirements. The primary research question is as follows: what digital support has the potential to usefully support persons with CF and their caregivers in the CF care? To answer this question, we address two preliminary questions: what important factors in everyday life affect the care of persons with CF? and how is the CF care delivered today and what are the limitations of CF care services? Methods: The overall research adopts a user-centered design approach in which future users are involved in the development process from the very beginning to ensure that the apps developed best suit the potential users. The research presented in the paper follows an interpretative case study research strategy seeking to understand the concerns and needs of persons with CF and their caregivers. Data were collected through semistructured qualitative interviews involving 74 participants in seven European countries and from internet forums. Results: The results of the analysis phase show a strong need for individuality of the digital support, as well as for its adaptability to different contexts. The paper presents the concerns and needs of the participants in the study and extracts a set of relevant features for a self-management app ecosystem. Education, enzyme dosage calculation, nutrition management, treatment organization, health diary, treatment follow-up, practical guidelines for treatment, communication with doctors, and communication with peers are foreseen as useful features. Conclusions: The results indicate the readiness for self-management in the CF care even in countries that provide well-functioning health care services for CF care. The large diversity of user requirements identified reflects the crucial role user integration plays in developing apps for a chronic condition such as CF. The need for personalization stemming from the individuality of the patients and the need for communication with health care professionals support the idea of an app ecosystem for the self-management of CF.User Needs in the Development of a Health App Ecosystem for Self-Management of Cystic Fibrosis: User-Centered Development ApproachpublishedVersio

Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study

[EN] Background: Despite a large number of clinical trials aiming at evaluating the digital self-management of chronic diseases, there is little discussion about users¿ experiences with digital approaches. However, a good user experience is a critical factor for technology adoption. Understanding users¿ experiences can inform the design of approaches toward increased motivation for digital self-management. Objective: This study aimed to evaluate the self-management of cystic fibrosis (CF) with a focus on gastrointestinal concerns and the care of young patients. Following a user-centered design approach, we developed a self-management app for patients and parents and a web tool for health care professionals (HCPs). To evaluate the proposed solutions, a 6-month clinical trial was conducted in 6 European CF competence centers. This paper analyzes the user acceptance of the technology and the benefits and disadvantages perceived by the trial participants. Methods: A mixed methods approach was applied. Data were collected through 41 semistructured qualitative interviews of patients, parents, and HCPs involved in the clinical trial. In addition, data were collected through questionnaires embedded in the self-management app. Results: Support for enzyme dose calculation and nutrition management was found to be particularly useful. Patients and parents rapidly strengthened their knowledge about the treatment and increased their self-efficacy. Reported benefits include reduced occurrence of symptoms and enhanced quality of life. Patients and parents had different skills, requiring follow-up by HCPs in an introductory phase. HCPs valued obtaining precise information about the patients, allowing for more personalized advice. However, the tight follow-up of several patients led to an increased workload. Over time, as patient self-efficacy increased, patient motivation for using the app decreased and the quality of the reported data was reduced. Conclusions: Self-management enfolds a collaboration between patients and HCPs. To be successful, a self-management approach should be accepted by both parties. Through understanding behaviors and experiences, this study defines recommendations for a complex case¿the demanding treatment of CF. We identify target patient groups and situations for which the app is most beneficial and suggest focusing on these rather than motivating for regular app usage over a long time. We also advise the personalized supervision of patients during the introduction of the approach. Finally, we propose to develop guidance for HCPs to facilitate changes in practice. As personalization and technology literacy are factors found to influence the acceptance of digital self-management of other chronic diseases, it is relevant to consider the proposed recommendations beyond the case of CF.The authors of this paper, on behalf of the MyCyFAPP consortium, acknowledge the European Union and the Horizon 2020 Research and Innovation Framework Programme for funding the project (ref. 643806). The authors would like to thank all project partners for their collaboration during participant recruitment and project management. Without the dedication of participants in terms of time, effort, and valuable input, this publication would not have been possible. The authors would like to thank all the participants who contributed to this work.Floch, J.; Vilarinho, T.; Zettl, A.; Ibáñez Sánchez, G.; Calvo-Lerma, J.; Stav, E.; Halland Haro, P.... (2020). 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An Approach to Developing Extensible Application Composition Environments for End Users

Most software is now developed by professional programmers, and the millions of users of “shrink-wrapped” applications never meet the developers. The skills of professional programmers are obviously required in many software development projects. However, there are also reasons, ranging from practical and economical to philosophical and educational, why people without this background may want to develop their own applications or tailor applications to their own use. The general purpose programming languages and development tools used by professional programmers are not suitable for people outside this profession. Instead, people outside this profession need more high-level tools that allow them to express solutions using domain and task specific terms. Despite the accumulated experience from such environments within the end-user programming community, creating a new application development environment for a domain or task remains a large development task, and can be too time-consuming and costly to be found worthwhile. This thesis presents an approach to reducing the effort needed in developing extensible application composition environments for end users. We use the term “end user” in the same way as the end-user programming community, to denote a person who wants to develop an application or tailor an application to a specific use, without needing professional programming skills. The work in the thesis was initiated based on experience from development of proof-of-concept implementations of such environments in two European research projects. With this background, a set of user and developer roles are identified and organised into a value chain for development of such environments. Further, the approach combines the research areas of component-based software engineering and end-user programming to propose an overall architecture, component frameworks and tools suitable to support development of such environments. The validity of the results is established through partial prototyping of the frameworks and tools, combined with qualitative analyses of how these can be fully implemented and of their suitability for their intended purpose. The main contributions of this thesis are: • a value chain for development of application composition environments, with identification and description of tasks of each of the identified developer roles; • an overall architecture for developing extensible application composition environments based on component frameworks; • architecture of two component frameworks defining mechanisms and rules of behaviour for components ensuring extensibility at runtime and edit time; • definition and description of a set of UML stereotypes for modelling domain frameworks based on the component frameworks, and a mapping to Java/JavaBeans allowing a code generator tool to produce part of the implementation; • definition and description of tools which use the model of a domain framework as input and partially transform the work of creating composition environments and editors for domain objects from a programming task to a configuration task

Co-designing a mHealth Application for Self-management of Cystic Fibrosis

Self-management has the potential to improve patient care and decrease healthcare costs. It is especially beneficial for patients suffering from chronic diseases that require continuous therapy and follow-up such as cystic fibrosis (CF). Mobile phones have become pervasive and, therefore, are perfectly suited for self-management. However, due to the large amount of time CF patients spend in their treatment, usability and usefulness are critical factors for the adoption of an assistive mobile application (App). In our work, we applied co-design in the development of high fidelity mockups for a CF Self-management App. The co-design was conducted as a series of workshops involving CF patients, theirs parents, as well as health professionals, from multiple countries in Europe. The results include design concepts and User Interface elements that conciliate the different perspectives between the stakeholders. This paper describes the co-design process, the resulting design and further considerations which emerged along the process.acceptedVersio

Putting Context in Context: The Role and Design of Context Management in a Mobility and Adaptation Enabling Middleware

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SamÅpne: Prosesser for samordnet åpning av kommunale data

Rapporten beskriver prosesser for samordnet åpning av kommunale data for • Kommuner som ønsker å etablere gode prosesser for åpning av data • Nasjonale aktører (f.eks. Digitaliseringsdirektoratet og KS) som kan bidra til at kommunale, åpne data samordnes på tvers av kommuner. Prosessene er utarbeidet i samarbeid med norske kommuner og har fokus på: 1) Kommunene må ha oversikt over sine data. 2) Kommunene må samarbeide med næringslivet for å sikre at dataene fremmer digital innovasjon. 3) Åpning av data må samordnes på tvers av kommuner for å legge til rette for at innovasjoner får et større marked. Prosessene relateres til generiske roller med definerte ansvarsområder. Rapporten gir innspill til hvordan prosessene kan rulles ut i kommuneorganisasjonene. Kommuner er veldig forskjellige. Hver kommune må derfor definere hvilke aktører, stillinger eller enheter som skal fylle de generiske rollene og ta ansvar for de ulike aktivitetene. Det må også stilles krav til fagsystemer, kommuneorganisasjonene må tilpasses, og Felles datakatalog bør få funksjonalitet tilpasset kommunale data.publishedVersio

Using open data for digital innovation: Barriers for use and recommendations for publishers

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