Background Although eHealth technology makes it possible to improve the management of complex health care systems and follow up on chronic patients, it is not without challenges, thus requiring the development of efficient programs and graphic user interface (GUI) features. Similar information technology tools are crucial, as health care populations are going to have to endure social distancing measures in the forthcoming months and years. Objective This study aims to provide adequate and personalized support to complex health care populations by developing a specific web-based mobile app. The app is designed around the patient and adapted to specific groups, for example, people with complex or rare diseases, autism, or disabilities (especially among children) as well as Alzheimer or senile dementia. The app’s core features include the collection, labeling, analysis, and sorting of clinical data. Furthermore, it authorizes a network of people around the patient to securely access the data contained in his or her electronic health record. Methods The application was designed according to the paradigms of patient-centered care and user-centered design (UCD). It considers the patient as the main empowered and motivating factor in the management of his or her well-being. Implementation was informed through a family needs and technology perception assessment. We used 3 interdisciplinary focus groups and 2 assessment surveys to study the contexts of app use, subpopulation management, and preferred functions. Finally, we developed an observational study involving 116 enrolled patients and 253 system users, followed by 2 feedback surveys to evaluate the performance and impact of the app. Results In the validated general GUI, we developed 10 user profiles with different privacy settings. We tested 81 functions and studied a modular structure based on disease or medical area. This allowed us to identify replicable methods to be applied to module design. The observational study not only showed good family and community engagement but also revealed some limitations that need to be addressed. In total, 42 of 51 (82%) patients described themselves as satisfied or very satisfied . Health care providers reported facilitated communication with colleagues and the need to support data quality. Conclusions The experimented solution addressed some of the health system challenges mentioned by the World Health Organization: usability appears to be significantly improved when the GUI is designed according to patients’ UCD mental models and when new media and medical literacy are promoted. This makes it possible to maximize the impact of eHealth products, thereby overcoming some crucial gaps reported in the literature. Two main features seemed to have potential benefit compared with other eHealth products: the modeling, within the app, of both the formal...

BACKGROUND The ABILITA2 project developed an eHealth Application designed around the needs of complex healthcare populations and customizable for specific subpopulations such as persons with rare diseases, autism or age-related dementia. The platform allows the collection, labeling and advanced search of clinical data and socio-medical care information and the creation, by the patient concerned or a legal tutor, of a personalized network of persons who may access his/her Electronic Health Record. OBJECTIVE The platform has been designed according to the paradigms of patient-centered care and user-centered design and considers the Patient as the main empowered and motivating actor of the management of his/her wellbeing. METHODS With interdisciplinary Focus groups, sub-population management has been assessed by means of surveys, questionnaires and meetings with 5 patients’ associations. Finally, by means of an observational study and follow-up questionnaire, the performance and impact of the platform have been evaluated. RESULTS In an overall evaluation, 82.5% of responders affirmed to be “much” or “very much” satisfied, positively reporting the possibility of self-management. Replicable models of analysis and design for other subpopulations have been identified. The platform is presently one of the few eHealth solutions available in Italy that are also applicable to pediatric groups of complex chronic diseases. CONCLUSIONS The decision to center the project on patients’ needs was found to be a success factor, with evidence of greater involvement of the patient compared to professional figures; it has been balanced by functions of control to support data quality. The experimented solution allows to address some of the health system challenges mentioned by WHO: usability appears to be significantly improved when the GUI is designed according to patient’s mental models and when new media and medical literacy are promoted, overcoming crucial gaps reported in literature for maximizing the impact of eHealth products.