• VAccess is an innovative web-based platform that addresses many of the barriers to care for patients with vascular anomalies (VAs). • VAccess gives primary care clinicians timely access to VA education and connects them with VA experts across the United States. Patients with vascular anomalies (VAs) face many challenges accessing expert care due to the rarity of these diseases and limited VA knowledge and experience among primary care clinicians (PCCs). Barriers to expert-informed VA care can lead to misdiagnosis, incorrect treatment, and poor outcomes. Therefore, we developed VAccess, a web-based tool to support clinicians managing VAs. We used user-centered design methods to engage PCCs in three phases of participatory design. We conducted 23 semi-structured interviews, 7 co-design 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 semi-structured 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 co-developed 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 co-designed with primary care clinicians and an expert panel of VA specialists to help clinicians who care for patients with vascular anomalies. 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.
Sisk et al. (Sun,) studied this question.