276 Full Spectrum Town Hall Meetings - Advancing Clinician-Patient-Researcher Engagement for Hidradenitis Suppurativa (HS)
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...
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| Format: | Article |
| Language: | English |
| Published: |
Cambridge University Press
2024-04-01
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| Series: | Journal of Clinical and Translational Science |
| Online Access: | https://www.cambridge.org/core/product/identifier/S2059866124002528/type/journal_article |
| _version_ | 1797226931932889088 |
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| author | Rhonda Kost Anuradha Hashemi-Arend Athena Gierbolini Melissa Samanoglu PaMalick Mbye Fahim Shahriar John Frew Michelle Lowes |
| author_facet | Rhonda Kost Anuradha Hashemi-Arend Athena Gierbolini Melissa Samanoglu PaMalick Mbye Fahim Shahriar John Frew Michelle Lowes |
| author_sort | Rhonda Kost |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-24T14:32:45Z |
| format | Article |
| id | doaj.art-b3f97ef4afc240399478a9d38bf228b0 |
| institution | Directory Open Access Journal |
| issn | 2059-8661 |
| language | English |
| last_indexed | 2024-04-24T14:32:45Z |
| publishDate | 2024-04-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj.art-b3f97ef4afc240399478a9d38bf228b02024-04-03T02:00:06ZengCambridge University PressJournal of Clinical and Translational Science2059-86612024-04-018848410.1017/cts.2024.252276 Full Spectrum Town Hall Meetings - Advancing Clinician-Patient-Researcher Engagement for Hidradenitis Suppurativa (HS)Rhonda Kost0Anuradha Hashemi-Arend1Athena Gierbolini2Melissa Samanoglu3PaMalick Mbye4Fahim Shahriar5John Frew6Michelle Lowes7The Rockefeller University, New York, NYThe Rockefeller University, New York, NYThe HS Foundation Monisa Nayim, Clinical Directors Network (CDN), New York, NYClinical Directors Network (CDN), New York, NYClinical Directors Network (CDN), New York, NYClinical Directors Network (CDN), New York, NYThe Rockefeller University, New York, NY The University of New South Wales, AustraliaThe Rockefeller University, New York, NY The HS FoundationOBJECTIVES/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.https://www.cambridge.org/core/product/identifier/S2059866124002528/type/journal_article |
| spellingShingle | Rhonda Kost Anuradha Hashemi-Arend Athena Gierbolini Melissa Samanoglu PaMalick Mbye Fahim Shahriar John Frew Michelle Lowes 276 Full Spectrum Town Hall Meetings - Advancing Clinician-Patient-Researcher Engagement for Hidradenitis Suppurativa (HS) Journal of Clinical and Translational Science |
| title | 276 Full Spectrum Town Hall Meetings - Advancing Clinician-Patient-Researcher Engagement for Hidradenitis Suppurativa (HS) |
| title_full | 276 Full Spectrum Town Hall Meetings - Advancing Clinician-Patient-Researcher Engagement for Hidradenitis Suppurativa (HS) |
| title_fullStr | 276 Full Spectrum Town Hall Meetings - Advancing Clinician-Patient-Researcher Engagement for Hidradenitis Suppurativa (HS) |
| title_full_unstemmed | 276 Full Spectrum Town Hall Meetings - Advancing Clinician-Patient-Researcher Engagement for Hidradenitis Suppurativa (HS) |
| title_short | 276 Full Spectrum Town Hall Meetings - Advancing Clinician-Patient-Researcher Engagement for Hidradenitis Suppurativa (HS) |
| title_sort | 276 full spectrum town hall meetings advancing clinician patient researcher engagement for hidradenitis suppurativa hs |
| url | https://www.cambridge.org/core/product/identifier/S2059866124002528/type/journal_article |
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