User-centered design of a web-based self-management site for individuals with type 2 diabetes - providing a sense of control and community

Background: To design and test a web-based self-management tool for patients with type 2 diabetes for its usability and feasibility. Methods: An evidence-based, theory-driven website was created for patients with type 2 diabetes. Twenty-three patients with type 2 diabetes aged >= 25 years were recruited from 2 diabetes care centers in Toronto, Canada. We employed focus group methodology to assess acceptability, sustainability, strengths and weaknesses of the self-management website. Based on these results, revisions were made to the website. Three cycles of individual usability testing sessions using cognitive task analysis were conducted with patients with type 2 diabetes. Revisions to the website were made based on results from this testing. Results: We identified five themes concerning participants' experiences of health care and related unmet needs: 1) Desire for information and for greater access to timely and personalized care to gain a sense of control of their disease; 2) Desire for community (sharing experiences with others) to fulfill practical and emotional needs; 3) Potential roles of an online self-management website in self-empowerment, behavior change, self-management and health care delivery; 4) Importance of a patient-centered perspective in presenting content (e.g. common assumptions, medical nomenclature, language, messaging, sociocultural context); 5) Barriers and facilitators to use of a self-management website (including perceived relevance of content, incorporation into usual routine, availability for goal-directed use, usability issues). Conclusions: Participants outlined a series of unmet health care needs, and stated that they wanted timely access to tailored knowledge about their condition, mechanisms to control and track their disease, and opportunities to share experiences with other patients. These findings have implications for patients with type 2 diabetes of diverse ages, socioeconomic backgrounds, and disease severity, as well as to the design of other computer-based resources for chronic disease management.