NDLI: “The power imbalance was blown out the window”: developing and implementing creative workshops to enhance communication of statistics in patient and public involvement in clinical trials

Content Provider	Springer Nature : BioMed Central
Author	Goulao, Beatriz Morisson, Susan
Abstract	Background Despite the importance of statistical and numerical aspects in key decisions related to clinical trials and their impact in patient’s care, patient and public involvement remains underdeveloped in this field. Communication is a barrier to enable successful involvement of patients and the public in numerical aspects. Treatment important differences, a crucial numerical aspect in trials, is considered a priority for patient and public involvement. Creative methods have been proposed to improve communication of technical concepts with members of the public; and to democratise and improve inclusivity in patient and public involvement in health research. Methods Working with creative professionals, public partners, and statisticians, we aimed to develop, pilot and implement creative workshops to promote a shared understanding of treatment important differences; and co-develop creative prototypes that could be used to communicate the statistical concept to a wider audience in the future. Three 2 to 4 h creative workshops based in the UK were delivered. The first two workshops included 22 participants. They were online and worked as pilots to refine the final in-person workshop via participant feedback and discussion. The final workshop focused on treatment important differences, and we collected information from participants on expectations, subjective numeracy, and experience. Results The final workshop included 13 participants (5 creative professionals, 4 public partners, and 4 clinical trial statisticians). Participants reported creative workshops helped improve communication of treatment important differences between stakeholders reaching a common understanding of their meaning; and helped democratise knowledge exchange. Each group developed a creative prototype to communicate about treatment important differences with a wider audience, including a song, game, and a cartoon. Participants recommended the format to improve communication of other statistical or complex concepts between stakeholders. Conclusions Creative workshops can promote shared understanding of complex, statistical concepts and co-development of creative outputs amongst stakeholders. Future work should explore generalisability of the intervention, and what outcomes might be important to consider when implementing creative workshops in patient and public involvement practice.
Related Links	https://researchinvolvement.biomedcentral.com/counter/pdf/10.1186/s40900-024-00560-8.pdf
Ending Page	11
Page Count	11
Starting Page	1
File Format	HTM / HTML
ISSN	20567529
DOI	10.1186/s40900-024-00560-8
Journal	Research Involvement and Engagement
Issue Number	1
Volume Number	10
Language	English
Publisher	BioMed Central
Publisher Date	2024-03-20
Access Restriction	Open
Subject Keyword	Medicine Public Health Medicine/Public Health
Content Type	Text
Resource Type	Article
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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