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Involving people affected by cancer in research: a review of literature
Author(s) -
HUBBARD G.,
KIDD L.,
DONAGHY E.
Publication year - 2008
Publication title -
european journal of cancer care
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.849
H-Index - 67
eISSN - 1365-2354
pISSN - 0961-5423
DOI - 10.1111/j.1365-2354.2007.00842.x
Subject(s) - medicine , inclusion (mineral) , general partnership , experiential learning , ethos , narrative , narrative review , critical appraisal , accrual , public relations , work (physics) , medical education , alternative medicine , social science , pedagogy , sociology , political science , pathology , mechanical engineering , linguistics , philosophy , accounting , earnings , intensive care medicine , law , business , engineering
The purpose of the literature review was to find out why people affected by cancer have been involved in research; how they have been involved and the impact of their involvement. We used systematic methods to search for literature, applied inclusion and exclusion criteria, conducted a quality appraisal, selected relevant data from the included articles for analysis, and provided a narrative summary of these data. The literature shows that people affected by cancer, particularly women with breast cancer, have been involved in a range of research programmes, projects and initiatives especially in the USA, UK, Canada and Australia. Their involvement has impacted upon research design, accrual and response rates. There is increasing recognition of the need for an infrastructure, including formal recruitment procedures, training and mentoring, to support an agenda of involvement and a need to challenge the ethos of traditional research, which does not easily lend itself to this agenda. Further critique of the role of ‘experiential knowledge’ in research is required so that researchers and people affected by cancer can work in partnership.