Objective: To systematically review the literature on involving people affected by cancer in healthcare research, policy and planning and practice.
Methods: Database searches, cited author, and grey literature searches were conducted
Results: 131documents were included. Rationales for the agenda of involvement represent two polar characteristics of modernity: individualism and collectivism. In research, people acted as advocates, strategists, advisors, reviewers and as participatory researchers. In policy and planning, people were involved in one-off involvement exercises and in longer-term partnerships. Men, those with rare cancers, children, and people who are socially deprived have been rarely involved. There is little research evidence about the impact of involvement. Training and information, resources and change in attitudes and roles are required to implement an agenda of involvement.
Conclusion: The USA, the UK, followed by Canada and Australia have promoted an agenda of involvement.
- community-based research and or services
- self care
ASJC Scopus subject areas