Web 2.0 systems supporting childhood chronic disease management: a general architecture compliant with the WHA eHealth Resolution

Medicine 2.0

Introduction: At the time they reach adolescence, 10-15% of all children live with a chronic disease. The recent technical advances have provided a foundation for ubiquitous and proactive health systems that use data from multiple sources to supply individuals and communities with support to improve their state of health and avoid health risks The aim of this research was to develop a general Web 2.0 system architecture compliant with the WHA eHealth resolution for support of children with a chronic disease. Methods: Participatory action research was used to stepwise define a design specification in the form of a pattern language. Support for children diagnosed with diabetes type 1 was used as the example area. Each individual design pattern was represented graphically and textually in the form Title, Context, Problem, Solution, Examples and References. Application references were included at the lowest level in the graphical overview in the pattern language but not specified in detail in the textual descriptions. The design represented in the pattern language was progressively implemented in a Web 2.0 system during the development process. The resulting system was introduced for patients, relatives, and caregivers in 2006. Results: The resulting design patterns describe a Web 2.0 architecture supplying three main services to communities including children suffering from a chronic disease: • access to resources for development and maintenance of the specific competences needed for management of the chronic disease in the community; • endorsement of learning about the chronic disease management through online peer-to-peer communication; • systematic accreditation of learning materials and processes The design patterns constituting the architecture are divided into functional and non-functional design elements, and formulated at the levels of organizational, system, and application design. Two application-level preconditions were identified for implementation of the architecture in specific communities. First, the implementations have to be epidemiologically sensitive in order to support provision of age- and need-adjusted delivery of services on an equal basis to both resourceful and vulnerable groups of children. This means that the applications that constitute the interface between the system content and the users must be chosen to suit the information infrastructure in the community and be affordable for the broad majority of patients and their families. Second, to provide individualized support to children with a chronic disease, the system has to be accessible at all times and in all types of daily-life situations. Consequently, the applications cannot be restricted to stationary computer platforms, but also need to be available at different types of mobile devices, e.g. personal media players and cell phones. Conclusions: Even though a high level of user participation in developing and managing content is the core of the Web 2.0 concept, the WHA ehealth resolution necessitates to structure this participation and to assure the medical quality of the services that are provided. The use of design patterns allowed representing the core design elements of a Web 2.0 system architecture upon which an 'ecological' development of content respecting these constraints can be built.