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The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB)

OBJECTIVES: The value of patient and public involvement and engagement (PPIE) within the development and refinement of outcome measures is becoming increasingly recognized. The aim of this paper is to provide an overview of how PPIE was integrated within the development of a new measure designed for...

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Autores principales: Carlton, Jill, Peasgood, Tessa, Mukuria, Clara, Johnson, Julie, Ogden, Margaret, Tovey, Wade
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8993969/
https://www.ncbi.nlm.nih.gov/pubmed/35394269
http://dx.doi.org/10.1186/s41687-022-00437-y
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author Carlton, Jill
Peasgood, Tessa
Mukuria, Clara
Johnson, Julie
Ogden, Margaret
Tovey, Wade
author_facet Carlton, Jill
Peasgood, Tessa
Mukuria, Clara
Johnson, Julie
Ogden, Margaret
Tovey, Wade
author_sort Carlton, Jill
collection PubMed
description OBJECTIVES: The value of patient and public involvement and engagement (PPIE) within the development and refinement of outcome measures is becoming increasingly recognized. The aim of this paper is to provide an overview of how PPIE was integrated within the development of a new measure designed for use in economic evaluations across health and social care, the EQ Health and Wellbeing (EQ-HWB™). METHODS: Four PPIE sessions were held at key stages. Discussions from each session and the outcome of any tasks were shared with the wider research team and used to help inform decision-making. RESULTS AND DISCUSSION: PPIE covered several components of outcome measure development including; review of conceptual model; discussion on sub-domain inclusion; item refinement and reduction; pre-testing of items; selection of items for the measure; and design of the measure. Key learning points for future projects were highlighted including; consideration of practicalities, resources and logistics of PPIE activities; how sessions and activities are managed effectively; and how to managing expectations and communication from both researcher and PPIE perspectives. CONCLUSIONS: The PPIE group provided invaluable insight into perspectives of future patients and carers. Their input was fed into a number of developmental stages. The formal involvement from the PPIE group meant that the voice of the general public was heard. This helped ensure the appropriateness of the design of the final measure.
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spelling pubmed-89939692022-04-22 The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB) Carlton, Jill Peasgood, Tessa Mukuria, Clara Johnson, Julie Ogden, Margaret Tovey, Wade J Patient Rep Outcomes Short Report OBJECTIVES: The value of patient and public involvement and engagement (PPIE) within the development and refinement of outcome measures is becoming increasingly recognized. The aim of this paper is to provide an overview of how PPIE was integrated within the development of a new measure designed for use in economic evaluations across health and social care, the EQ Health and Wellbeing (EQ-HWB™). METHODS: Four PPIE sessions were held at key stages. Discussions from each session and the outcome of any tasks were shared with the wider research team and used to help inform decision-making. RESULTS AND DISCUSSION: PPIE covered several components of outcome measure development including; review of conceptual model; discussion on sub-domain inclusion; item refinement and reduction; pre-testing of items; selection of items for the measure; and design of the measure. Key learning points for future projects were highlighted including; consideration of practicalities, resources and logistics of PPIE activities; how sessions and activities are managed effectively; and how to managing expectations and communication from both researcher and PPIE perspectives. CONCLUSIONS: The PPIE group provided invaluable insight into perspectives of future patients and carers. Their input was fed into a number of developmental stages. The formal involvement from the PPIE group meant that the voice of the general public was heard. This helped ensure the appropriateness of the design of the final measure. Springer International Publishing 2022-04-08 /pmc/articles/PMC8993969/ /pubmed/35394269 http://dx.doi.org/10.1186/s41687-022-00437-y 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/) .
spellingShingle Short Report
Carlton, Jill
Peasgood, Tessa
Mukuria, Clara
Johnson, Julie
Ogden, Margaret
Tovey, Wade
The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB)
title The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB)
title_full The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB)
title_fullStr The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB)
title_full_unstemmed The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB)
title_short The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB)
title_sort role of patient and public involvement and engagement (ppie) within the development of the eq health and wellbeing (eq-hwb)
topic Short Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8993969/
https://www.ncbi.nlm.nih.gov/pubmed/35394269
http://dx.doi.org/10.1186/s41687-022-00437-y
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