The VAccess program: codesign and development of a web-based tool to address barriers to care for vascular anomalies

Patients with vascular anomalies (VAs) face many challenges in accessing expert care because of the rarity of these diseases and limited VA knowledge and experience among primary care clinicians (PCCs). These barriers to expert-informed VA care can lead to misdiagnosis, incorrect treatment, and poor outcomes. Therefore, we developed VA Care Access (VAccess), a web-based tool designed to support clinicians managing patients with VAs. We used user-centered design methods to engage PCCs in 3 phases of participatory design. We conducted 23 semistructured interviews, 7 codesign sessions, and 5 usability testing sessions. We analyzed interview data using thematic analysis and conducted rapid qualitative analysis on design and usability session data and shared results with the website developers to iteratively refine the tool. Through semistructured interviews, PCCs suggested including content such as referral information, next steps for evaluation and management, and disease education. They also suggested interactive features such as a tool to communicate with specialists. Through the design and usability testing sessions, we codeveloped VAccess features, including "Ask a Specialist," "Find a VA Center," and "Educational Materials Hub." The clinicians helped us refine aspects of the tool to be more efficient and intuitive. VAccess (www.vaccess.org) is a web-based tool codesigned with PCCs and an expert panel of VA specialists to help clinicians who care for patients with VAs. Most importantly, VAccess is a sustainable and adaptive platform that allows for ongoing integration of new features, resources, articles, and tools, enabling it to adapt to user needs and evolve alongside advancements in the field.