Abstract
Sickle cell disease (SCD) is the most prevalent blood inherited disorder in the world. Patients suffer from several chronic issues, comorbidities and high-mortality rates. Despite its prevalence, the disease remains largely ignored. A literature review was conducted and a questionnaire was sent to patients in order to understand the potential of e-health tools to support people with SCD. Additionally, focus groups have been conducted to detail respondents' answers. The results showed that patients felt isolated and misunderstood. They also highlighted patients' wishes for a social network able to make them feel less scattered. Using participatory-design techniques, we designed a prototype of user-centric interface for an online self-supportive SCD patient community. The mock-ups include chatrooms, forums and videoconferences capabilities. They illustrate how SCD patients' social networking and caregivers-patient relationship needs could be met. Future work will focus on the implementation and evaluation of the system.
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