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Hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research

BACKGROUND: Patients and caregivers investigate a wide range of approaches to address the signs and symptoms of their condition. Such investigation could lead to new treatment insights or avenues for research. However, currently there are few channels through which patients and families can share th...

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Autores principales: Moxham, Freya, Cutaran, Christine, Sadocha, Jakub, Capozza, Korey
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10576294/
https://www.ncbi.nlm.nih.gov/pubmed/37833815
http://dx.doi.org/10.1186/s40900-023-00473-y
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author Moxham, Freya
Cutaran, Christine
Sadocha, Jakub
Capozza, Korey
author_facet Moxham, Freya
Cutaran, Christine
Sadocha, Jakub
Capozza, Korey
author_sort Moxham, Freya
collection PubMed
description BACKGROUND: Patients and caregivers investigate a wide range of approaches to address the signs and symptoms of their condition. Such investigation could lead to new treatment insights or avenues for research. However, currently there are few channels through which patients and families can share the results of their personal experiences; they need a platform to share their insights with the research community. METHODOLOGY: Two non-profit organizations, Global Parents for Eczema Research and the International Alliance of Dermatology Patient Organizations, developed a project to pioneer new ways for patients and caregivers to share their personal insights for research and for researchers and treatment developers to learn about those ideas. This project, the “Big Ideas for AD Research”, was a global challenge that awarded prizes and recognition to patients’ and caregivers’ research hypotheses related to atopic dermatitis management, treatment, and prevention. RESULTS: The Challenge was open for 5 weeks and received 70 submissions from 11 countries. Entries were judged by two separate panels of experts that included both researchers and patients and caregivers. Winners were awarded with a monetary prize, recognized on social media, and connected by Global Parents for Eczema Research staff to an appropriate research group to help further their ideas. CONCLUSION: The Big Ideas for Eczema Challenge provided a proof of concept for a novel approach to bridging the gap between patients/caregivers and researchers/clinicians by developing a platform to garner the best ideas from the patient community for research. This model could be further leveraged by other patient groups to help solicit patients’ and caregivers’ ideas for research.
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spelling pubmed-105762942023-10-15 Hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research Moxham, Freya Cutaran, Christine Sadocha, Jakub Capozza, Korey Res Involv Engagem Commentary BACKGROUND: Patients and caregivers investigate a wide range of approaches to address the signs and symptoms of their condition. Such investigation could lead to new treatment insights or avenues for research. However, currently there are few channels through which patients and families can share the results of their personal experiences; they need a platform to share their insights with the research community. METHODOLOGY: Two non-profit organizations, Global Parents for Eczema Research and the International Alliance of Dermatology Patient Organizations, developed a project to pioneer new ways for patients and caregivers to share their personal insights for research and for researchers and treatment developers to learn about those ideas. This project, the “Big Ideas for AD Research”, was a global challenge that awarded prizes and recognition to patients’ and caregivers’ research hypotheses related to atopic dermatitis management, treatment, and prevention. RESULTS: The Challenge was open for 5 weeks and received 70 submissions from 11 countries. Entries were judged by two separate panels of experts that included both researchers and patients and caregivers. Winners were awarded with a monetary prize, recognized on social media, and connected by Global Parents for Eczema Research staff to an appropriate research group to help further their ideas. CONCLUSION: The Big Ideas for Eczema Challenge provided a proof of concept for a novel approach to bridging the gap between patients/caregivers and researchers/clinicians by developing a platform to garner the best ideas from the patient community for research. This model could be further leveraged by other patient groups to help solicit patients’ and caregivers’ ideas for research. BioMed Central 2023-10-13 /pmc/articles/PMC10576294/ /pubmed/37833815 http://dx.doi.org/10.1186/s40900-023-00473-y Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Commentary
Moxham, Freya
Cutaran, Christine
Sadocha, Jakub
Capozza, Korey
Hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research
title Hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research
title_full Hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research
title_fullStr Hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research
title_full_unstemmed Hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research
title_short Hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research
title_sort hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research
topic Commentary
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10576294/
https://www.ncbi.nlm.nih.gov/pubmed/37833815
http://dx.doi.org/10.1186/s40900-023-00473-y
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