title: A patient-initiated voluntary online survey of adverse medical events: the perspective of 696 injured patients and families.
abstract: BACKGROUND
  Preventable medical errors continue to be a major cause of death in the USA and throughout the world. Many patients have written about their experiences on websites and in published books.
  
  
  METHODS
  As patients and family members who have experienced medical harm, we have created a nationwide voluntary survey in order to more broadly and systematically capture the perspective of patients and patient families experiencing adverse medical events and have used quantitative and qualitative analysis to summarise the responses of 696 patients and their families.
  
  
  RESULTS
  Harm was most commonly associated with diagnostic and therapeutic errors, followed by surgical or procedural complications, hospital-associated infections and medication errors, and our quantitative results match those of previous provider-initiated patient surveys. Qualitative analysis of 450 narratives revealed a lack of perceived provider and system accountability, deficient and disrespectful communication and a failure of providers to listen as major themes. The consequences of adverse events included death, post-traumatic stress, financial hardship and permanent disability. These conditions and consequences led to a loss of patients' trust in both the health system and providers. Patients and family members offered suggestions for preventing future adverse events and emphasised the importance of shared decision-making.
  
  
  CONCLUSIONS
  This large voluntary survey of medical harm highlights the potential efficacy of patient-initiated surveys for providing meaningful feedback and for guiding improvements in patient care.
authors.affiliation: Department of Medicine, University of Florida, Gainesville, Florida, USA.
authors.forename: Frederick S
authors.initials: FS
authors.lastname: Southwick
authors.affiliation: Department of Behavioral Science and Community Health, College of Public Health and Health Professionals, University of Florida, Gainesville, Florida, USA.
authors.forename: Nicole M
authors.initials: NM
authors.lastname: Cranley
authors.affiliation: Empowered Patient Coalition, San Francisco, California, USA.
authors.forename: Julia A
authors.initials: JA
authors.lastname: Hallisy
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003428:Cross Infection / Q000453:epidemiology / Q000523:psychology; D003951:Diagnostic Errors / Q000009:adverse effects / Q000523:psychology; D005190:Family; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D020407:Internet; D016365:Liability, Legal; D008297:Male; D019300:Medical Errors / Q000009:adverse effects* / Q000145:classification / Q000523:psychology*; D008508:Medication Errors / Q000706:statistics & numerical data; D008875:Middle Aged; D063868:Patient Outcome Assessment; D010361:Patients; D011183:Postoperative Complications / Q000453:epidemiology / Q000523:psychology; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Communication; Medical error, measurement/epidemiology; Patient safety; Qualitative research; Surveys