title: Requirements and access needs of patients with chronic disease to their hospital electronic health record: results of a cross-sectional questionnaire survey.
abstract: To identify patient's views on the functionality required for personalised access to the secondary care electronic health record (EHR) and their priorities for development.
  
  
  
  Quantitative analysis of a cross-sectional self-complete survey of patient views on required EHR functionality from a secondary care EHR, including a patient ranking of functionality.
  
  
  
  Secondary care patients attending a regional cystic fibrosis unit in the north of England.
  
  
  
  201 adults (106 (52.7%) males), median age 29 years (range 17-58 years), entered and completed the study. Inclusion criteria are as follows: a confirmed diagnosis of cystic fibrosis, aged 16 years and over, at the time of clinical stability.
  
  
  
  Quantitative responses within 4 themes; (1) value placed on aspects of the EHR; (2) access requirements to functions of the EHR; (3) views on information sent to the EHR and (4) patient feedback entered into the EHR. A ranked score for 15 functions of the EHR was obtained.
  
  
  
  Highest ratings (% reporting item as very important/important) were reported for access to clinical measures (lung function (94%), C reactive protein (84%), sputum microbiology (81%) and blood results (80%)), medication changes (82%) and lists (83%) and sending repeat prescription (83%) and treatment requests (80%), while sending symptom diaries was less so (62%). Email contact with clinicians was the most valuable communication element of the EHR (84% very important/important). Of 15 features of the EHR (1=most desirable to 15=least desirable), patients identified 'clinical measures' (2.62 (CI 2.07 to 3.06)), and 'access to medication lists' (4.91 (CI 4.47 to 5.44)), as highest priority for development and the ability to comment on errors/omissions (11.0 (CI 10.6 to 11.5)) or experience of care (11.8 (CI 11.4 to 12.2)) as lowest.
  
  
  
  Patients want extensive personal access to their hospital EHR, placing high importance on the viewing of practical clinical measures and medication management. These influence routine day-to-day care and are priorities for development.
authors.affiliation: School of Clinical and Applied Science, Leeds Beckett University, Leeds, West Yorkshire, UK.
authors.forename: H
authors.initials: H
authors.lastname: White
authors.affiliation: Adult Cystic Fibrosis Unit, St James's University Hospital, Leeds, West Yorkshire, UK.
authors.forename: L
authors.initials: L
authors.lastname: Gillgrass
authors.affiliation: Adult Cystic Fibrosis Unit, St James's University Hospital, Leeds, West Yorkshire, UK.
authors.forename: A
authors.initials: A
authors.lastname: Wood
authors.affiliation: Respiratory Medicine/School of Medicine, St James's University Hospital/University of Leeds, Leeds, West Yorkshire, UK.
authors.forename: D G
authors.initials: DG
authors.lastname: Peckham
mesh_terms: D000293:Adolescent; D000328:Adult; D002908:Chronic Disease; D003430:Cross-Sectional Studies; D003550:Cystic Fibrosis / Q000175:diagnosis*; D057286:Electronic Health Records; D034742:Electronic Mail / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D033283:Patient Access to Records; D057240:Patient Preference; D012044:Regression Analysis; D011795:Surveys and Questionnaires; D006113:United Kingdom; D055815:Young Adult