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Nothing about us, without us: is for us
BACKGROUND: Public Participation Involvement Engagement (PPIE) is now strongly encouraged across health policy and research. Coproduction, although linked to PPIE is a way of working that can be applied to work collaboratively with participants in health. However, a lack of definition which leads to...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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BioMed Central
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9351243/ https://www.ncbi.nlm.nih.gov/pubmed/35927767 http://dx.doi.org/10.1186/s40900-022-00372-8 |
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author | Rahman, Aamnah Nawaz, Salma Khan, Eisha Islam, Shahid |
author_facet | Rahman, Aamnah Nawaz, Salma Khan, Eisha Islam, Shahid |
author_sort | Rahman, Aamnah |
collection | PubMed |
description | BACKGROUND: Public Participation Involvement Engagement (PPIE) is now strongly encouraged across health policy and research. Coproduction, although linked to PPIE is a way of working that can be applied to work collaboratively with participants in health. However, a lack of definition which leads to interchangeable terminology, limited guidance and examples of good practice on how to facilitate the process impedes progress. The Born in Bradford (BiB) research programme consists of a family of observational and longitudinal birth cohort studies (Raynor et al. in BMC Public Health 8:1–13, 2008; Dickerson et al. in BMC Public Health 16(1):1–14, 2016) which include participants from multi-ethnic and socially diverse backgrounds (Uphoff et al. in Int J Equity Health 12:1–12, 2013). METHODS: This paper aims to highlight our approach to PPIE and coproduction methodologies, to provide an outline of the methods we have utilised to work collaboratively with our cohort populations from diverse communities and how we have managed to overcome challenges to achieve successful PPIE.A secondary aim of this paper is to demonstrate the value of PPIE and coproduction and how it can enhance research. Some examples from recent years are provided to demonstrate how useful the approach has been for BiB community engagement and community participation. In addition, we discuss the methods we have used and how this methodology has now been embedded into protocol and practice in our research. RESULTS: Successful and productive PPIE and coproduction occur where stakeholders are taken on board and realise the impact that their involvement can have in terms of policy design and delivery. CONCLUSIONS: The involvement of participants and the community in research about them becomes more credible when equal partnerships are formed and they are involved in the whole process leading to community ownership of research. Hence, nothing about us, without us—is for us. |
format | Online Article Text |
id | pubmed-9351243 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-93512432022-08-05 Nothing about us, without us: is for us Rahman, Aamnah Nawaz, Salma Khan, Eisha Islam, Shahid Res Involv Engagem Research Article BACKGROUND: Public Participation Involvement Engagement (PPIE) is now strongly encouraged across health policy and research. Coproduction, although linked to PPIE is a way of working that can be applied to work collaboratively with participants in health. However, a lack of definition which leads to interchangeable terminology, limited guidance and examples of good practice on how to facilitate the process impedes progress. The Born in Bradford (BiB) research programme consists of a family of observational and longitudinal birth cohort studies (Raynor et al. in BMC Public Health 8:1–13, 2008; Dickerson et al. in BMC Public Health 16(1):1–14, 2016) which include participants from multi-ethnic and socially diverse backgrounds (Uphoff et al. in Int J Equity Health 12:1–12, 2013). METHODS: This paper aims to highlight our approach to PPIE and coproduction methodologies, to provide an outline of the methods we have utilised to work collaboratively with our cohort populations from diverse communities and how we have managed to overcome challenges to achieve successful PPIE.A secondary aim of this paper is to demonstrate the value of PPIE and coproduction and how it can enhance research. Some examples from recent years are provided to demonstrate how useful the approach has been for BiB community engagement and community participation. In addition, we discuss the methods we have used and how this methodology has now been embedded into protocol and practice in our research. RESULTS: Successful and productive PPIE and coproduction occur where stakeholders are taken on board and realise the impact that their involvement can have in terms of policy design and delivery. CONCLUSIONS: The involvement of participants and the community in research about them becomes more credible when equal partnerships are formed and they are involved in the whole process leading to community ownership of research. Hence, nothing about us, without us—is for us. BioMed Central 2022-08-04 /pmc/articles/PMC9351243/ /pubmed/35927767 http://dx.doi.org/10.1186/s40900-022-00372-8 Text en © The Author(s) 2022 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 | Research Article Rahman, Aamnah Nawaz, Salma Khan, Eisha Islam, Shahid Nothing about us, without us: is for us |
title | Nothing about us, without us: is for us |
title_full | Nothing about us, without us: is for us |
title_fullStr | Nothing about us, without us: is for us |
title_full_unstemmed | Nothing about us, without us: is for us |
title_short | Nothing about us, without us: is for us |
title_sort | nothing about us, without us: is for us |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9351243/ https://www.ncbi.nlm.nih.gov/pubmed/35927767 http://dx.doi.org/10.1186/s40900-022-00372-8 |
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