title: Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK.
abstract: BACKGROUND
  The development of Electronic Health Records (EHRs) forms an integral part of the information strategy for the National Health Service (NHS) in the UK, with the aim of facilitating health information exchange for patient care and secondary use, including research and healthcare planning. Implementing EHR systems requires an understanding of patient expectations for consent mechanisms and consideration of public awareness towards information sharing as might be made possible through integrated EHRs across primary and secondary health providers.
  
  
  OBJECTIVE
  To explore levels of public awareness about EHRs and to examine attitudes towards different consent models with respect to sharing identifiable and de-identified records for healthcare provision, research and planning.
  
  
  METHODS
  A cross-sectional questionnaire survey was administered to adult patients and members of the public in primary and secondary care clinics in West London, UK in 2011. In total, 5331 individuals participated in the survey, and 3157 were included in the final analysis.
  
  
  RESULTS
  The majority (91%) of respondents expected to be explicitly asked for consent for their identifiable records to be accessed for health provision, research or planning. Half the respondents (49%) did not expect to be asked for consent before their de-identified records were accessed. Compared with White British respondents, those from all other ethnic groups were more likely to anticipate their permission would be obtained before their de-identified records were used. Of the study population, 59% reported already being aware of EHRs before the survey. Older respondents and individuals with complex patterns of interaction with healthcare services were more likely to report prior awareness of EHRs. Individuals self-identifying as belonging to ethnic groups other than White British, and those with lower educational qualifications were less likely to report being aware of EHRs than White British respondents and respondents with degree-level education, respectively. Those who reported being aware of EHRs were less likely to say they expected explicit consent to be sought before use of their de-identified record.
  
  
  CONCLUSIONS
  A large number of patients remain unaware of EHRs, while preference for implicit consent is stronger among those who report previous awareness. Differences in awareness levels and consent expectations between groups with different socio-demographic characteristics suggest that public education and information campaigns should target specific groups to increase public awareness and ensure meaningful informed consent mechanisms.
authors: NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom.
authors: Fiona
authors: F
authors: Riordan
authors: NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom. Electronic address: c.papoutsi@imperial.ac.uk.
authors: Chrysanthi
authors: C
authors: Papoutsi
authors: NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom.
authors: Julie E
authors: JE
authors: Reed
authors: Department of Social and Environmental Health Research, London School of Hygiene and Tropical Medicine, London, United Kingdom.
authors: Cicely
authors: C
authors: Marston
authors: NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom.
authors: Derek
authors: D
authors: Bell
authors: NIHR CLAHRC for Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, United Kingdom; Department of Primary Care & Public Health, Imperial College London, London, United Kingdom.
authors: Azeem
authors: A
authors: Majeed
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D003430:Cross-Sectional Studies; D057286:Electronic Health Records; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel; D006302:Health Services Research; D006801:Humans; D007258:Informed Consent; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D011639:Public Opinion; D011795:Surveys and Questionnaires; D006113:United Kingdom; D055815:Young Adult
keywords: Electronic health records; Information governance; Informed consent; Patient attitudes; Policy
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