Full spectrum town halls for hidradenitis suppurativa: A model for advancing clinician–patient–researcher engagement in clinical and translational research

TL;DR

This paper introduces a model for engaging patients, clinicians, and researchers in hidradenitis suppurativa research to improve understanding and care.

Contribution

The paper presents a novel stakeholder engagement model using full spectrum town halls to advance translational research in hidradenitis suppurativa.

Findings

Full spectrum town halls fostered empathy, trust, and collaboration among stakeholders.

The model accelerated scientific discovery and patient-centered research in hidradenitis suppurativa.

Participant feedback highlighted the effectiveness of the model in bridging knowledge and trust gaps.

Abstract

Hidradenitis suppurativa (HS) is a chronic, painful inflammatory skin disease affecting 0.1% of the US population. Limited understanding of HS biology and ineffective treatments leave patients dissatisfied, facing misdiagnosis, and diagnostic delays. To address these challenges, the Rockefeller University Center for Clinical Translational Science, Clinical Directors Network, and the HS Foundation launched an initiative to foster engagement among stakeholders. Three full spectrum town halls (FSTH) were designed to engage patients, scientists, and clinicians bidirectionally. Topics spanned the translational research spectrum to amplify patient testimony, update the HS community on scientific and clinical research advances, and promote patient-centered research and care. The FSTH model aims to enhance empathy, foster trust, accelerate scientific discovery, and improve care. FSTH-2018 showcased patients’ experiences living with HS, the scientific and clinical state of the art, and tailored a new HS study to patient preferences. FSTH-2021 shared results of the study, including new insights into HS biology. FSTH-2023 highlighted best practices for outpatient surgical care of HS. Participant feedback underscored FSTH’s role in nurturing empathy and advancing discovery and patient engagement. FSTH serves as an effective model for uniting stakeholders, bridging gaps in knowledge and trust, and accelerating translational research to improve HS care.

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