Involving people affected by cancer in research: a review of literature

G. Hubbard*, L. Kidd, E. Donaghy

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

30 Citations (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)233-244
Number of pages12
JournalEuropean Journal of Cancer Care
Volume17
Issue number3
Early online date3 Dec 2007
DOIs
Publication statusPublished - May 2008

Keywords

  • cancer
  • participatory research
  • user involvement

ASJC Scopus subject areas

  • Oncology

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