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“We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach

BACKGROUND: Public involvement in clinical translational research is increasingly recognised as essential for relevant and reliable research. Public involvement must be diverse and inclusive to enable research that has the potential to reach those that stand to benefit from it the most, and thus add...

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Autores principales: Islam, Safina, Joseph, Olivia, Chaudry, Atiha, Forde, Davine, Keane, Annie, Wilson, Cassie, Begum, Nasima, Parsons, Suzanne, Grey, Tracy, Holmes, Leah, Starling, Bella
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8234650/
https://www.ncbi.nlm.nih.gov/pubmed/34174961
http://dx.doi.org/10.1186/s40900-021-00292-z
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author Islam, Safina
Joseph, Olivia
Chaudry, Atiha
Forde, Davine
Keane, Annie
Wilson, Cassie
Begum, Nasima
Parsons, Suzanne
Grey, Tracy
Holmes, Leah
Starling, Bella
author_facet Islam, Safina
Joseph, Olivia
Chaudry, Atiha
Forde, Davine
Keane, Annie
Wilson, Cassie
Begum, Nasima
Parsons, Suzanne
Grey, Tracy
Holmes, Leah
Starling, Bella
author_sort Islam, Safina
collection PubMed
description BACKGROUND: Public involvement in clinical translational research is increasingly recognised as essential for relevant and reliable research. Public involvement must be diverse and inclusive to enable research that has the potential to reach those that stand to benefit from it the most, and thus address issues of health equity. Several recent reports, however, indicate that public involvement is exclusive, including in its interactions with ethnic groups. This paper outlines a novel community-led methodology – a community sandpit – to address the inclusion of ethnic groups in public involvement in research, reports on its evaluation, findings, legacy and impact. METHODS: Through detailed planning – thinking through and taking into account all stakeholders perspectives in the planning and design of the sandpit, relationship-building, co-design and co-delivery between the Public Programmes team based at Manchester University NHS Foundation Trust and the Greater Manchester Black and Minority Ethnic Network - the community sandpit was held in July 2018. RESULTS: Fifteen community organisations took part in the two-day event, as well as six researchers, and six creative practitioners. Six community-based partnership projects were seed-funded; four of these received additional funding from other sources also. CONCLUSIONS: Evaluation of the sandpit showed the format to be well-received by all: it levelled power relationships between community organisations, health researchers and research infrastructure; it developed capacity amongst researchers about the accessibility, role and potential of community organisations. Described as “not another community seed fund” by community partners, the sandpit offered community partners, equitable avenues for collaboration within Greater Manchester translational research and led to the formation of the Black, Asian and Minority Ethnic Research Advisory Group (BRAG Vocal Website information, - https://www.wearevocal.org/opportunities/black-asian-and-minority-ethnic-research-advisory-group-brag/, 2021). The method has the potential to be replicated elsewhere to support inclusive public involvement in research and inclusive research. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-021-00292-z.
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spelling pubmed-82346502021-06-28 “We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach Islam, Safina Joseph, Olivia Chaudry, Atiha Forde, Davine Keane, Annie Wilson, Cassie Begum, Nasima Parsons, Suzanne Grey, Tracy Holmes, Leah Starling, Bella Res Involv Engagem Methodology BACKGROUND: Public involvement in clinical translational research is increasingly recognised as essential for relevant and reliable research. Public involvement must be diverse and inclusive to enable research that has the potential to reach those that stand to benefit from it the most, and thus address issues of health equity. Several recent reports, however, indicate that public involvement is exclusive, including in its interactions with ethnic groups. This paper outlines a novel community-led methodology – a community sandpit – to address the inclusion of ethnic groups in public involvement in research, reports on its evaluation, findings, legacy and impact. METHODS: Through detailed planning – thinking through and taking into account all stakeholders perspectives in the planning and design of the sandpit, relationship-building, co-design and co-delivery between the Public Programmes team based at Manchester University NHS Foundation Trust and the Greater Manchester Black and Minority Ethnic Network - the community sandpit was held in July 2018. RESULTS: Fifteen community organisations took part in the two-day event, as well as six researchers, and six creative practitioners. Six community-based partnership projects were seed-funded; four of these received additional funding from other sources also. CONCLUSIONS: Evaluation of the sandpit showed the format to be well-received by all: it levelled power relationships between community organisations, health researchers and research infrastructure; it developed capacity amongst researchers about the accessibility, role and potential of community organisations. Described as “not another community seed fund” by community partners, the sandpit offered community partners, equitable avenues for collaboration within Greater Manchester translational research and led to the formation of the Black, Asian and Minority Ethnic Research Advisory Group (BRAG Vocal Website information, - https://www.wearevocal.org/opportunities/black-asian-and-minority-ethnic-research-advisory-group-brag/, 2021). The method has the potential to be replicated elsewhere to support inclusive public involvement in research and inclusive research. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-021-00292-z. BioMed Central 2021-06-26 /pmc/articles/PMC8234650/ /pubmed/34174961 http://dx.doi.org/10.1186/s40900-021-00292-z Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis 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 Methodology
Islam, Safina
Joseph, Olivia
Chaudry, Atiha
Forde, Davine
Keane, Annie
Wilson, Cassie
Begum, Nasima
Parsons, Suzanne
Grey, Tracy
Holmes, Leah
Starling, Bella
“We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach
title “We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach
title_full “We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach
title_fullStr “We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach
title_full_unstemmed “We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach
title_short “We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach
title_sort “we are not hard to reach, but we may find it hard to trust” …. involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach
topic Methodology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8234650/
https://www.ncbi.nlm.nih.gov/pubmed/34174961
http://dx.doi.org/10.1186/s40900-021-00292-z
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