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Patient and public involvement in research and the Cancer Experiences Collaborative: benefits and challenges

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Patient and public involvement in research and the Cancer Experiences Collaborative: benefits and challenges. / Froggatt, Katherine; Preston, Nancy; Turner, Mary et al.
In: BMJ Supportive and Palliative Care, Vol. 5, No. 5, 12.2015, p. 518-521.

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Froggatt K, Preston N, Turner M, Kerr C. Patient and public involvement in research and the Cancer Experiences Collaborative: benefits and challenges. BMJ Supportive and Palliative Care. 2015 Dec;5(5):518-521. Epub 2014 Apr 11. doi: 10.1136/bmjspcare-2013-000548

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@article{d320b5fd07c64de48cd46d3970aadff2,
title = "Patient and public involvement in research and the Cancer Experiences Collaborative: benefits and challenges",
abstract = "Aims and objectivesThe involvement of patients in the design and conduct of research is increasingly promoted by policy and research bodies. The experiences of individuals who become involved in research in this way are not well understood. This study aims to describe the experiences of people's participation in patient and public involvement (PPI) in supportive and palliative care research, specifically with respect to the benefits and challenges of participation for the individuals and the broader research support structures. MethodsIn this qualitative exploratory study, semistructured interviews were undertaken with individuals who had a cancer diagnosis and were involved in a supportive and palliative care research collaborative over a period of 6 years. Recruitment was through the host university organisations involved in the research collaborative. A thematic analysis was undertaken to identify commonalities and differences across their experiences. FindingsThe eight participants in the study were highly motivated and undertook PPI in research alongside other voluntary activities. They identified a number of research and personal benefits: bringing a lay perspective into research, making a difference and personal gains. Personal gains concerned support, new knowledge and skills and greater confidence. The challenges to participation that were identified included the emotional and practical nature of the work, issues of language and identifying the difference made. ConclusionsInvolvement in supportive and palliative care research is valued by people with a cancer diagnosis, but there are ongoing issues of emotional support and good communication through the use of appropriate language in documentation. ",
author = "Katherine Froggatt and Nancy Preston and Mary Turner and Chris Kerr",
year = "2015",
month = dec,
doi = "10.1136/bmjspcare-2013-000548",
language = "English",
volume = "5",
pages = "518--521",
journal = "BMJ Supportive and Palliative Care",
issn = "2045-435X",
publisher = "BMJ Publishing Group Ltd",
number = "5",

}

RIS

TY - JOUR

T1 - Patient and public involvement in research and the Cancer Experiences Collaborative

T2 - benefits and challenges

AU - Froggatt, Katherine

AU - Preston, Nancy

AU - Turner, Mary

AU - Kerr, Chris

PY - 2015/12

Y1 - 2015/12

N2 - Aims and objectivesThe involvement of patients in the design and conduct of research is increasingly promoted by policy and research bodies. The experiences of individuals who become involved in research in this way are not well understood. This study aims to describe the experiences of people's participation in patient and public involvement (PPI) in supportive and palliative care research, specifically with respect to the benefits and challenges of participation for the individuals and the broader research support structures. MethodsIn this qualitative exploratory study, semistructured interviews were undertaken with individuals who had a cancer diagnosis and were involved in a supportive and palliative care research collaborative over a period of 6 years. Recruitment was through the host university organisations involved in the research collaborative. A thematic analysis was undertaken to identify commonalities and differences across their experiences. FindingsThe eight participants in the study were highly motivated and undertook PPI in research alongside other voluntary activities. They identified a number of research and personal benefits: bringing a lay perspective into research, making a difference and personal gains. Personal gains concerned support, new knowledge and skills and greater confidence. The challenges to participation that were identified included the emotional and practical nature of the work, issues of language and identifying the difference made. ConclusionsInvolvement in supportive and palliative care research is valued by people with a cancer diagnosis, but there are ongoing issues of emotional support and good communication through the use of appropriate language in documentation.

AB - Aims and objectivesThe involvement of patients in the design and conduct of research is increasingly promoted by policy and research bodies. The experiences of individuals who become involved in research in this way are not well understood. This study aims to describe the experiences of people's participation in patient and public involvement (PPI) in supportive and palliative care research, specifically with respect to the benefits and challenges of participation for the individuals and the broader research support structures. MethodsIn this qualitative exploratory study, semistructured interviews were undertaken with individuals who had a cancer diagnosis and were involved in a supportive and palliative care research collaborative over a period of 6 years. Recruitment was through the host university organisations involved in the research collaborative. A thematic analysis was undertaken to identify commonalities and differences across their experiences. FindingsThe eight participants in the study were highly motivated and undertook PPI in research alongside other voluntary activities. They identified a number of research and personal benefits: bringing a lay perspective into research, making a difference and personal gains. Personal gains concerned support, new knowledge and skills and greater confidence. The challenges to participation that were identified included the emotional and practical nature of the work, issues of language and identifying the difference made. ConclusionsInvolvement in supportive and palliative care research is valued by people with a cancer diagnosis, but there are ongoing issues of emotional support and good communication through the use of appropriate language in documentation.

U2 - 10.1136/bmjspcare-2013-000548

DO - 10.1136/bmjspcare-2013-000548

M3 - Journal article

C2 - 24727479

VL - 5

SP - 518

EP - 521

JO - BMJ Supportive and Palliative Care

JF - BMJ Supportive and Palliative Care

SN - 2045-435X

IS - 5

ER -