Design and Evaluation Patient Portal for Patients with HTLV-1

Background : Patient portals are increasingly accepted as part of standard medical care. This study aimed to design and evaluate a patient portal for patients with Human T-lymphotropic virus 1 (HTLV-1) that provides information to learn more about their medical conditions. Methods : This Cross-sectional descriptive study was carried out in four phases. 1) Literature review in scientific database and analysis of users ‘needs. 2) Use Delphi techniques by a multidisciplinary workgroup of Neurologists, Immunologists, and Specialists in Health Information Management and Medical Informatics, 3) Desing a patient portal, 4) User evaluation by patients and professionals is done by the SUS scale and Nielsen's principles questionnaire. Results : We developed a portal that includes Six structural features including: home page, patient profile, care team, educational materials, contact us, and about us. The most important features of the portal in the survey conducted on patients included: Reminders for appointments (93.3%), making an appointment (90%), requesting medication recipes (83.3%), viewing test results (70%), and others. Also, the SUS results showed that the users found the portal user-friendly, useful, and efficient. Conclusion : It can also be said that patients have different needs, so designing a portal to provide information and support to these people seems essential.