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276 Full Spectrum Town Hall Meetings - Advancing Clinician-Patient-Researcher Engagement for Hidradenitis Suppurativa (HS)

Published online by Cambridge University Press:  03 April 2024

Rhonda Kost
Affiliation:
The Rockefeller University, New York, NY
Anuradha Hashemi-Arend
Affiliation:
The Rockefeller University, New York, NY
Athena Gierbolini
Affiliation:
The HS Foundation Monisa Nayim, Clinical Directors Network (CDN), New York, NY
Melissa Samanoglu
Affiliation:
Clinical Directors Network (CDN), New York, NY
PaMalick Mbye
Affiliation:
Clinical Directors Network (CDN), New York, NY
Fahim Shahriar
Affiliation:
Clinical Directors Network (CDN), New York, NY
John Frew
Affiliation:
The Rockefeller University, New York, NY The University of New South Wales, Australia
Michelle Lowes
Affiliation:
The Rockefeller University, New York, NY The HS Foundation
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Abstract

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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.

Type
Health Equity and Community Engagement
Creative Commons
Creative Common License - CCCreative Common License - BYCreative Common License - NCCreative Common License - ND
This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.
Copyright
© The Author(s), 2024. The Association for Clinical and Translational Science