A Web-Based Application for Complex Health Care Populations: User-Centered Design Approach (Preprint)

Abstract

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.