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Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda

Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda
Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda
Aim The study 'Listening to the Views of People Affected by Cancer About Cancer Research' is currently exploring the views people affected by cancer have about cancer research and identifying their research priorities. Integral to this is the broader aim of ensuring an effective, collaborative participation of patients and carers in the design and conduct of the study. On the basis of experiences with the study to date, the latter is explored in this paper.

Design The study adopts a 'participatory research' approach entailing the formation of a 'reference group' and a subsequent patient and carer co-researcher group. Patient and carer members of these groups were identified through the patient forums of UK cancer networks and by approaching 'hard to reach' representatives directly through community groups and participating study sites.

Findings Experiences from this study illustrate that a 'participatory research' approach is appropriate in engaging patients and carers in the research process. Establishing a group of people affected by cancer in the study was found to be particularly effective in enhancing the design and conduct of the research.

Conclusions 'Participatory research' offers an effective means of involving patients and carers throughout the research process, thus strengthening the relevance and appropriateness of research findings and methods.
1369-6513
3-12
Wright, David N.M.
a55be721-4b15-4555-bf61-73fcb75c1a39
Corner, Jessica L.
eddc9d69-aa12-4de5-8ab0-b20a6b5765fa
Hopkinson, Jane B.
c656f8e9-7962-4bdc-87ea-e26e12ff1d24
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
Wright, David N.M.
a55be721-4b15-4555-bf61-73fcb75c1a39
Corner, Jessica L.
eddc9d69-aa12-4de5-8ab0-b20a6b5765fa
Hopkinson, Jane B.
c656f8e9-7962-4bdc-87ea-e26e12ff1d24
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73

Wright, David N.M., Corner, Jessica L., Hopkinson, Jane B. and Foster, Claire (2006) Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda. Health Expectations, 9 (1), 3-12. (doi:10.1111/j.1369-7625.2006.00353.x).

Record type: Article

Abstract

Aim The study 'Listening to the Views of People Affected by Cancer About Cancer Research' is currently exploring the views people affected by cancer have about cancer research and identifying their research priorities. Integral to this is the broader aim of ensuring an effective, collaborative participation of patients and carers in the design and conduct of the study. On the basis of experiences with the study to date, the latter is explored in this paper.

Design The study adopts a 'participatory research' approach entailing the formation of a 'reference group' and a subsequent patient and carer co-researcher group. Patient and carer members of these groups were identified through the patient forums of UK cancer networks and by approaching 'hard to reach' representatives directly through community groups and participating study sites.

Findings Experiences from this study illustrate that a 'participatory research' approach is appropriate in engaging patients and carers in the research process. Establishing a group of people affected by cancer in the study was found to be particularly effective in enhancing the design and conduct of the research.

Conclusions 'Participatory research' offers an effective means of involving patients and carers throughout the research process, thus strengthening the relevance and appropriateness of research findings and methods.

Full text not available from this repository.

More information

Published date: 24 January 2006
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 59110
URI: http://eprints.soton.ac.uk/id/eprint/59110
ISSN: 1369-6513
PURE UUID: 77028774-5c80-463d-b481-7e820cf97542
ORCID for Claire Foster: ORCID iD orcid.org/0000-0002-4703-8378

Catalogue record

Date deposited: 26 Aug 2008
Last modified: 17 Dec 2019 01:47

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Contributors

Author: Jessica L. Corner
Author: Jane B. Hopkinson
Author: Claire Foster ORCID iD

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