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Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study

BACKGROUND: Public involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood. AIM: This study aimed to describe how we implemented public involvemen...

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Autores principales: Evans, Bridie Angela, Carson‐Stevens, Andrew, Cooper, Alison, Davies, Freya, Edwards, Michelle, Harrington, Barbara, Hepburn, Julie, Hughes, Tom, Price, Delyth, Siriwardena, Niroshan A., Snooks, Helen, Edwards, Adrian
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9615054/
https://www.ncbi.nlm.nih.gov/pubmed/35894169
http://dx.doi.org/10.1111/hex.13566
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author Evans, Bridie Angela
Carson‐Stevens, Andrew
Cooper, Alison
Davies, Freya
Edwards, Michelle
Harrington, Barbara
Hepburn, Julie
Hughes, Tom
Price, Delyth
Siriwardena, Niroshan A.
Snooks, Helen
Edwards, Adrian
author_facet Evans, Bridie Angela
Carson‐Stevens, Andrew
Cooper, Alison
Davies, Freya
Edwards, Michelle
Harrington, Barbara
Hepburn, Julie
Hughes, Tom
Price, Delyth
Siriwardena, Niroshan A.
Snooks, Helen
Edwards, Adrian
author_sort Evans, Bridie Angela
collection PubMed
description BACKGROUND: Public involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood. AIM: This study aimed to describe how we implemented public involvement, reflect on process and effects in a large‐scale multi‐site research study and present learning for future involvement practice. METHOD: We recorded public involvement roles and activities throughout the study and compared these to our original public involvement plan included in our project proposal. We held a group interview with study co‐applicants to explore their experiences, transcribed the recorded discussion and conducted thematic analysis. We synthesized the findings to develop recommendations for future practice. RESULTS: Public contributors' activities went beyond strategic study planning and management to include active involvement in data collection, analysis and dissemination. They attended management, scrutiny, planning and task meetings. They also facilitated public involvement through annual planning and review sessions, conducted a Public Involvement audit and coordinated public and patient input to stakeholder discussions at key study stages. Group interview respondents said that involvement exceeded their expectations. They identified effects such as changes to patient recruitment, terminology clarification and extra dissemination activities. They identified factors enabling effective involvement including team and leader commitment, named support contact, building relationships and demonstrating equality and public contributors being confident to challenge and flexible to meet researchers' timescales and work patterns. There were challenges matching resources to roles and questions about the risk of over‐professionalizing public contributors. CONCLUSION: We extended our planned approach to public involvement and identified benefits to the research process that were both specific and general. We identified good practice to support effective public involvement in health services research that study teams should consider in planning and undertaking research. PUBLIC CONTRIBUTION: This paper was co‐conceived, co‐planned and co‐authored by public contributors to contribute research evidence, based on their experiences of active involvement in the design, implementation and dissemination of a major health services research study.
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spelling pubmed-96150542022-10-31 Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study Evans, Bridie Angela Carson‐Stevens, Andrew Cooper, Alison Davies, Freya Edwards, Michelle Harrington, Barbara Hepburn, Julie Hughes, Tom Price, Delyth Siriwardena, Niroshan A. Snooks, Helen Edwards, Adrian Health Expect Regular Articles BACKGROUND: Public involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood. AIM: This study aimed to describe how we implemented public involvement, reflect on process and effects in a large‐scale multi‐site research study and present learning for future involvement practice. METHOD: We recorded public involvement roles and activities throughout the study and compared these to our original public involvement plan included in our project proposal. We held a group interview with study co‐applicants to explore their experiences, transcribed the recorded discussion and conducted thematic analysis. We synthesized the findings to develop recommendations for future practice. RESULTS: Public contributors' activities went beyond strategic study planning and management to include active involvement in data collection, analysis and dissemination. They attended management, scrutiny, planning and task meetings. They also facilitated public involvement through annual planning and review sessions, conducted a Public Involvement audit and coordinated public and patient input to stakeholder discussions at key study stages. Group interview respondents said that involvement exceeded their expectations. They identified effects such as changes to patient recruitment, terminology clarification and extra dissemination activities. They identified factors enabling effective involvement including team and leader commitment, named support contact, building relationships and demonstrating equality and public contributors being confident to challenge and flexible to meet researchers' timescales and work patterns. There were challenges matching resources to roles and questions about the risk of over‐professionalizing public contributors. CONCLUSION: We extended our planned approach to public involvement and identified benefits to the research process that were both specific and general. We identified good practice to support effective public involvement in health services research that study teams should consider in planning and undertaking research. PUBLIC CONTRIBUTION: This paper was co‐conceived, co‐planned and co‐authored by public contributors to contribute research evidence, based on their experiences of active involvement in the design, implementation and dissemination of a major health services research study. John Wiley and Sons Inc. 2022-07-27 2022-10 /pmc/articles/PMC9615054/ /pubmed/35894169 http://dx.doi.org/10.1111/hex.13566 Text en © 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Regular Articles
Evans, Bridie Angela
Carson‐Stevens, Andrew
Cooper, Alison
Davies, Freya
Edwards, Michelle
Harrington, Barbara
Hepburn, Julie
Hughes, Tom
Price, Delyth
Siriwardena, Niroshan A.
Snooks, Helen
Edwards, Adrian
Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study
title Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study
title_full Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study
title_fullStr Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study
title_full_unstemmed Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study
title_short Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study
title_sort implementing public involvement throughout the research process—experience and learning from the gps in eds study
topic Regular Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9615054/
https://www.ncbi.nlm.nih.gov/pubmed/35894169
http://dx.doi.org/10.1111/hex.13566
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