NDLI: Inclusive approaches to involvement of community groups in health research: the co-produced CHICO guidance

Content Provider	Springer Nature : BioMed Central
Author	Jameson, Catherine Haq, Zehra Musse, Samira Kosar, Zahra Watson, Gloria Wylde, Vikki
Abstract	Background Racially marginalised groups are underserved in healthcare and underrepresented in health research. Patient and public involvement and engagement (PPIE) is established as the method to ensure equity in health research. However, methods traditionally employed in PPIE can lead to the exclusion of some communities and exacerbation of existing inequalities, highlighting the need to develop inclusive processes for more inclusive community involvement in health research. We aimed to produce guidance to promote good practice for inclusive involvement of racially marginalised community groups in health research via public and community involvement and engagement. Methods The CHecklist for Inclusive COmmunity involvement in health research (CHICO) was co-produced by researchers and three Bristol-based community organisations: Dhek Bhal, My Friday Coffee Morning—Barton Hill, and Malcolm X Elders. After initial conversations and link building with community leaders to develop relationships, researchers attended at least three meetings with each community group to discuss preferred approaches to involvement. Each community group had a different format, and discussions were open and tailored to fit the groups preferences. The meetings were held in the community groups’ usual meeting venue. Notes from meetings were reviewed by researchers to identify key themes, which were used to inform the creation of a draft illustration which was then taken back to the community groups for refinement and used to inform the development of written guidance and the final illustration. Results Checklist items were structured into three stages: (1) building relationships, (2) reciprocal relationships and (3) practicalities. Stage 1 highlights the importance of building trust with the community group over time through regular visits to community venues and talking to people informally to understand the history of the group, their preferences and needs, and topics that are likely to be of interest to them. Stage 2 focusses on maintaining a reciprocal relationship and understanding how to best to give back to the community. Stage 3 provides guidance on the practicalities of designing and running inclusive community-based involvement activities, including consideration of the venue, format, communication-style, language requirements, social activities, and provision of food. Conclusions Our co-produced checklist can guide researchers in how to involve people from different ethnicities in health research that is relevant to their community.
Related Links	https://researchinvolvement.biomedcentral.com/counter/pdf/10.1186/s40900-023-00492-9.pdf
Ending Page	9
Page Count	9
Starting Page	1
File Format	HTM / HTML
ISSN	20567529
DOI	10.1186/s40900-023-00492-9
Journal	Research Involvement and Engagement
Issue Number	1
Volume Number	9
Language	English
Publisher	BioMed Central
Publisher Date	2023-09-07
Access Restriction	Open
Subject Keyword	Medicine Public Health Ethnic groups Community groups Diversity Involvement Health research Guidance 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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