title: The missing evidence: a systematic review of patients' experiences of adverse events in health care.
abstract: OBJECTIVE
  Preventable patient harm due to adverse events (AEs) is a significant health problem today facing contemporary health care. Knowledge of patients' experiences of AEs is critical to improving health care safety and quality. A systematic review of studies of patients' experiences of AEs was conducted to report their experiences, knowledge gaps and any challenges encountered when capturing patient experience data.
  
  
  METHODS
  Key words, synonyms and subject headings were used to search eight electronic databases from January 2000 to February 2015, in addition to hand-searching of reference lists and relevant journals.
  
  
  METHODS
  Titles and abstracts of publications were screened by two reviewers and checked by a third. Full-text articles were screened against the eligibility criteria.
  
  
  METHODS
  Data on design, methods and key findings were extracted and collated.
  
  
  RESULTS
  Thirty-three publications demonstrated patients identifying a range of problems in their care; most commonly identified were medication errors, communication and coordination of care problems. Patients' income, education, health burden and marital status influence likelihood of reporting. Patients report distress after an AE, often exacerbated by receiving inadequate information about the cause. Investigating patients' experiences is hampered by the lack of large representative patient samples, data over sufficient time periods and varying definitions of an AE.
  
  
  CONCLUSIONS
  Despite the emergence of policy initiatives to enhance patient engagement, few studies report patients' experiences of AEs. This information must be routinely captured and utilized to develop effective, patient-centred and system-wide policies to minimize and manage AEs.
authors.affiliation: School of Public Health, Sydney Medical School, University of Sydney, Rm 314 Edward Ford Building (A27), Sydney, NSW 2006, Australia.
authors.forename: Reema
authors.initials: R
authors.lastname: Harrison
authors.affiliation: School of Public Health, Sydney Medical School, University of Sydney, Rm 314 Edward Ford Building (A27), Sydney, NSW 2006, Australia.
authors.forename: Merrilyn
authors.initials: M
authors.lastname: Walton
authors.affiliation: School of Nursing and Midwifery, Deakin University, 221 Burwood Highway, Burwood, VIC 3125, Australia Department of Medicine, Royal Melbourne Hospital, The University of Melbourne, Melbourne, VIC 3125, Australia Melbourne School of Health Sciences, The University of Melbourne, Melbourne, VIC 3125, Australia.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Manias
authors.affiliation: Faculty of Health Sciences, University of Sydney, Cumberland Campus, Sydney, NSW, Australia.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Smith-Merry
authors.affiliation: School of Public Health, Sydney Medical School, University of Sydney, Rm 314 Edward Ford Building (A27), Sydney, NSW 2006, Australia.
authors.forename: Patrick
authors.initials: P
authors.lastname: Kelly
authors.affiliation: Health Sciences, University of Tasmania and Agency for Clinical Innovation, PO Box 699, Chatswood, NSW 2057, Australia.
authors.forename: Rick
authors.initials: R
authors.lastname: Iedema
authors.affiliation: Institute of Child Health, University College London, 30 Guilford Street, London WC1N 1EH, UK.
authors.forename: Lauren
authors.initials: L
authors.lastname: Robinson
mesh_terms: D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D019300:Medical Errors; D010361:Patients / Q000523:psychology*
keywords: health services research; hospital incident reporting; medical error; patient participation; patient safety; quality of health care