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

Content Provider	Springer Nature : BioMed Central
Author	Moxham, Freya Cutaran, Christine Sadocha, Jakub Capozza, Korey
Abstract	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.
Related Links	https://researchinvolvement.biomedcentral.com/counter/pdf/10.1186/s40900-023-00473-y.pdf
Ending Page	5
Page Count	5
Starting Page	1
File Format	HTM / HTML
ISSN	20567529
DOI	10.1186/s40900-023-00473-y
Journal	Research Involvement and Engagement
Issue Number	1
Volume Number	9
Language	English
Publisher	BioMed Central
Publisher Date	2023-10-13
Access Restriction	Open
Subject Keyword	Medicine Public Health Atopic dermatitis Patient-centered research AD Research competition Big ideas Patient insights Medicine/Public Health
Content Type	Text
Subject	Health Professions Health (social science)

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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