XXXX engagement with research: European population register study.

@entity1 @entity64
BACKGROUND: Lay involvement in implementation of research evidence into practice may include using research findings to guide individual care, as well as involvement in research processes and policy development. Little is known about the conditions required for such involvement. AIM: To assess @entity64 survivors' research awareness, use of research evidence in their own care and readiness to be involved in research processes. METHODS: Cross sectional survey of @entity64 survivors participating in population-based @entity64 registers in six European centres. RESULTS: The response rate was 74% (481/647). Reasons for participation in register research included responding to clinician request (56%) and to 'give something back' (19%); however, 20% were unaware that they were participating in a @entity64 register. Research awareness was generally low: 57% did not know the purpose of the register they had been recruited to; 73% reported not having received results from the register they took part in; 60% did not know about any research on @entity64 care. Few @entity1 (7.6%) used research evidence during their consultations with a doctor. The 34% of @entity1 who were interested in being involved in research were younger, more highly educated and already research aware. CONCLUSIONS: Across Europe, @entity64 survivors already participating in research appear ill informed about @entity64 research. Researchers, healthcare professionals and @entity1 associations need to improve how research results are communicated to @entity1 populations and research @entity1 , and to raise awareness of the relationship between research evidence and increased quality of care.
