title: Patient engagement with research: European population register study.
abstract: 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.
  
  
  OBJECTIVE
  To assess stroke survivors' research awareness, use of research evidence in their own care and readiness to be involved in research processes.
  
  
  METHODS
  Cross sectional survey of stroke survivors participating in population-based stroke 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 stroke 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 stroke care. Few participants (7.6%) used research evidence during their consultations with a doctor. The 34% of participants who were interested in being involved in research were younger, more highly educated and already research aware.
  
  
  CONCLUSIONS
  Across Europe, stroke survivors already participating in research appear ill informed about stroke research. Researchers, healthcare professionals and patient associations need to improve how research results are communicated to patient populations and research participants, and to raise awareness of the relationship between research evidence and increased quality of care.
authors.affiliation: Division of Health and Social Care Research, King's College London, London, UK.
authors.forename: Christopher
authors.initials: C
authors.lastname: McKevitt
authors.affiliation: Division of Health and Social Care Research, King's College London, London, UK.
authors.forename: Nina
authors.initials: N
authors.lastname: Fudge
authors.affiliation: Division of Health and Social Care Research, King's College London, London, UK.
authors.forename: Siobhan
authors.initials: S
authors.lastname: Crichton
authors.affiliation: Dijon Stroke Registry, University Hospital and Medical School of Dijon, University of Burgundy, Dijon, France.
authors.forename: Yannick
authors.initials: Y
authors.lastname: Bejot
authors.affiliation: Dijon Stroke Registry, University Hospital and Medical School of Dijon, University of Burgundy, Dijon, France.
authors.forename: Benoît
authors.initials: B
authors.lastname: Daubail
authors.affiliation: University of Florence & Institute of Neuroscience, National Research Council of Italy, Sesto Fiorentino (FI), Italy.
authors.forename: Antonio
authors.initials: A
authors.lastname: Di Carlo
authors.affiliation: Academic Section of Geriatric Medicine, Royal Infirmary, Glasgow, UK.
authors.forename: Patricia
authors.initials: P
authors.lastname: Fearon
authors.affiliation: Interdisciplinary Centre for Health Technology Assessment (HTA) and Public Health, University of Erlangen-Nuremberg, Erlangen, Germany.
authors.forename: Peter
authors.initials: P
authors.lastname: Kolominsky-Rabas
authors.affiliation: Division of Health and Social Care Research, King's College London, London, UK.
authors.forename: Anita
authors.initials: A
authors.lastname: Sheldenkar
authors.affiliation: NIHR Biomedical Research Centre at Guy's and St Thomas NHS Foundation Trust and King's College London, Guy's Hospital, London, UK.
authors.forename: Sophie
authors.initials: S
authors.lastname: Newbound
authors.affiliation: Division of Health and Social Care Research, King's College London, London, UK.
authors.forename: Charles D A
authors.initials: CD
authors.lastname: Wolfe
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D035843:Biomedical Research; D003430:Cross-Sectional Studies; D005060:Europe / Q000453:epidemiology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation / Q000706:statistics & numerical data*; D012042:Registries; D020521:Stroke / Q000453:epidemiology; D017741:Survivors / Q000706:statistics & numerical data
keywords: involvement in research; research awareness; stroke; survey