Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers

Plain English summary The way we collect and use patient experience data is important because of concern that patients and carers may be excluded by the limited ways it is currently done in NHS services. In this study, we worked in partnership with researchers, staff, patient and carer participants,...

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Autores principales:	Nicola Small, Bie Nio Ong, Annmarie Lewis, Dawn Allen, Nigel Bagshaw, Papreen Nahar, Caroline Sanders, the DEPEND team
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Patient and public involvement and engagement Patient participatory groups Patient experience Co-design Co-production Digital participation Medicine R Medicine (General) R5-920
Acceso en línea:	https://doaj.org/article/882ea802c14642c1825dc9077930c7af
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spelling	oai:doaj.org-article:882ea802c14642c1825dc9077930c7af2021-11-28T12:14:38ZCo-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers10.1186/s40900-021-00329-32056-7529https://doaj.org/article/882ea802c14642c1825dc9077930c7af2021-11-01T00:00:00Zhttps://doi.org/10.1186/s40900-021-00329-3https://doaj.org/toc/2056-7529Plain English summary The way we collect and use patient experience data is important because of concern that patients and carers may be excluded by the limited ways it is currently done in NHS services. In this study, we worked in partnership with researchers, staff, patient and carer participants, and patient and public involvement and engagement contributors, to co-design new tools for the collection, analysis and presentation of patient experience data. We focused on services for people with musculoskeletal conditions and services for people with severe mental health conditions. Our PPIE group, formed at the start of the study, represented a range of relevant and diverse health experiences from patients and carers of specialist services, and primary care. The aim of this paper is to share our experiences from working in partnership with our PPIE contributors on the co-design work of the study. Illustrations of how the PPIE activities added crucial insights in the shaping of the tools are given alongside the research data from patients, carers and staff participants. We experienced some challenges during the project. We discuss how we managed to work together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement). Our experiences of developing multiple components of PPIE work for this study demonstrates the importance of tailoring PPIE to suit different settings, and to complement people’s strengths and capacity. It also shows the value of bringing diverse experiences together enabling a shared approach to co-design. Researchers and PPIE contributors wrote this paper jointly.Nicola SmallBie Nio OngAnnmarie LewisDawn AllenNigel BagshawPapreen NaharCaroline Sandersthe DEPEND teamBMCarticlePatient and public involvement and engagementPatient participatory groupsPatient experienceCo-designCo-productionDigital participationMedicineRMedicine (General)R5-920ENResearch Involvement and Engagement, Vol 7, Iss 1, Pp 1-18 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Patient and public involvement and engagement Patient participatory groups Patient experience Co-design Co-production Digital participation Medicine R Medicine (General) R5-920
spellingShingle	Patient and public involvement and engagement Patient participatory groups Patient experience Co-design Co-production Digital participation Medicine R Medicine (General) R5-920 Nicola Small Bie Nio Ong Annmarie Lewis Dawn Allen Nigel Bagshaw Papreen Nahar Caroline Sanders the DEPEND team Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers
description	Plain English summary The way we collect and use patient experience data is important because of concern that patients and carers may be excluded by the limited ways it is currently done in NHS services. In this study, we worked in partnership with researchers, staff, patient and carer participants, and patient and public involvement and engagement contributors, to co-design new tools for the collection, analysis and presentation of patient experience data. We focused on services for people with musculoskeletal conditions and services for people with severe mental health conditions. Our PPIE group, formed at the start of the study, represented a range of relevant and diverse health experiences from patients and carers of specialist services, and primary care. The aim of this paper is to share our experiences from working in partnership with our PPIE contributors on the co-design work of the study. Illustrations of how the PPIE activities added crucial insights in the shaping of the tools are given alongside the research data from patients, carers and staff participants. We experienced some challenges during the project. We discuss how we managed to work together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement). Our experiences of developing multiple components of PPIE work for this study demonstrates the importance of tailoring PPIE to suit different settings, and to complement people’s strengths and capacity. It also shows the value of bringing diverse experiences together enabling a shared approach to co-design. Researchers and PPIE contributors wrote this paper jointly.
format	article
author	Nicola Small Bie Nio Ong Annmarie Lewis Dawn Allen Nigel Bagshaw Papreen Nahar Caroline Sanders the DEPEND team
author_facet	Nicola Small Bie Nio Ong Annmarie Lewis Dawn Allen Nigel Bagshaw Papreen Nahar Caroline Sanders the DEPEND team
author_sort	Nicola Small
title	Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers
title_short	Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers
title_full	Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers
title_fullStr	Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers
title_full_unstemmed	Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers
title_sort	co-designing new tools for collecting, analysing and presenting patient experience data in nhs services: working in partnership with patients and carers
publisher	BMC
publishDate	2021
url	https://doaj.org/article/882ea802c14642c1825dc9077930c7af
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Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers

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