A review of literature about involving people affected by cancer in research, policy and planning and practice.
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
131 documents 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 a change in attitudes and roles are required to implement an agenda of involvement.


CONCLUSIONS
The USA, the UK, followed by Canada and Australia have promoted an agenda of involvement.


CONCLUSIONS
A dissemination strategy to share good practice; involvement of all types of people; an individualised and flexible approach; training, resources and a shift in thinking from paternalism towards partnership working are required. More research is needed about the impact of involvement and relationships between rationales for involvement and implementation.
Hubbard
Gill
G
Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling FK9 4LA, United Kingdom. gill.hubbard@stir.ac.uk
Kidd
Lisa
L
Donaghy
Edward
E
McDonald
Charlotte
C
Kearney
Nora
N
D019985:Benchmarking; D003256:Community Participation; D003625:Data Collection; D003627:Data Interpretation, Statistical; D003659:Decision Making, Organizational; D019317:Evidence-Based Medicine / Q000458:organization & administration; D006285:Health Planning / Q000458:organization & administration*; D006291:Health Policy; D006301:Health Services Needs and Demand; D006801:Humans; D033181:Information Dissemination; D008495:Medical Oncology / Q000458:organization & administration*; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010358:Patient Participation / Q000379:methods / Q000523:psychology*; D018802:Patient-Centered Care / Q000458:organization & administration; D011209:Power, Psychological; D012106:Research / Q000458:organization & administration*; D012107:Research Design