Abstract
OBJECTIVES/GOALS: Full Spectrum Town Halls (FSTH) were organized to bring together patients, scientists, clinicians, advocates and others interested in Hidradenitis Suppurative (HS) – stakeholders across the spectrum of translational research – to infuse patient experiences and voices into designing HS research METHODS/STUDY POPULATION: The Rockefeller University (RU), Clinical Directors Network (CDN), and the HS Foundation organized three hybrid in-person/online HS FSTHs (2018-2023). The 2018 event focused on patients, describing the current state of HS knowledge and new research into HS biology (T2, T3). Patients shared lived experiences in testimonials and a panel discussion. Advocates described community and mental health resources (T4). The 2021 event returned research results (T2, T3) to the community and updates about treatments in the pipeline (T4). The 2023 FSTH targeted clinicians (T4) addressing a critical translational gap in HS care and presenting best practices in diagnosis, surgical, and medical treatments. RESULTS/ANTICIPATED RESULTS: Impact on science: FSTH attendees joined a Community Engagement Studio providing feedback used to refine study variables/procedures. Attendees joined research studies that advanced understanding HS mechanisms of disease, clinical course and treatment.Impact on patient experience: Participants appreciated having a forum to hear/share experiences of shame, mistrust, misdiagnosis and hope. Feedback improved practices for privacy, consenting, and returning study results. Impact on clinical practice and care: FSTH raised awareness of stigma, need for respect and empathy, and advanced learning about in disease mechanisms, effective biologics, importance of epithelial tunnels and surgical care. DISCUSSION/SIGNIFICANCE: HS is a stigmatizing, poorly understood disease. FSTHs fostered bidirectional learning among scientists, clinicians, patients and other stakeholders. Patients engaged with researchers to improve research design and participate in mechanistic and therapeutic clinical research, advancing the field.
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Disclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.