title: Designing a patient-centered user interface for access decisions about EHR data: implications from patient interviews.
abstract: BACKGROUND
  Electronic health records change the landscape of patient data sharing and privacy by increasing the amount of information collected and stored and the number of potential recipients. Patients desire granular control over who receives what information in their electronic health record (EHR), but there are no current patient interfaces that allow them to record their preferences for EHR access.
  
  
  OBJECTIVE
  Our aim was to derive the user needs of patients regarding the design of a user interface that records patients' individual choices about who can access data in their EHRs.
  
  
  METHODS
  We used semi-structured interviews.
  
  
  METHODS
  The study was conducted in Central Indiana.
  
  
  METHODS
  Thirty patients with data stored in an EHR, the majority of whom (70 %) had highly sensitive health EHR data, were included in the study.
  
  
  METHODS
  We conducted a thematic and quantitative analysis of transcribed interview data.
  
  
  RESULTS
  Patients rarely knew what data were in their EHRs, but would have liked to know. They also wanted to be able to control who could access what information in their EHR and wanted to be notified when their data we re accessed.
  
  
  CONCLUSIONS
  We derived six implications for the design of a patient-centered tool to allow individual choice in the disclosure of EHR: easy patient access to their EHRs; an overview of current EHR sharing permissions; granular, hierarchical control over EHR access; EHR access controls based on dates; contextual privacy controls; and notification when their EHRs are accessed.
authors.affiliation: Clemson University School of Computing, McAdams Hall, Clemson, SC, 29634, USA, caine@clemson.edu.
authors.forename: Kelly
authors.initials: K
authors.lastname: Caine
authors.forename: Spencer
authors.initials: S
authors.lastname: Kohn
authors.forename: Carrie
authors.initials: C
authors.lastname: Lawrence
authors.forename: Rima
authors.initials: R
authors.lastname: Hanania
authors.forename: Eric M
authors.initials: EM
authors.lastname: Meslin
authors.forename: William M
authors.initials: WM
authors.lastname: Tierney
mesh_terms: D000328:Adult; D003657:Decision Making; D057286:Electronic Health Records / Q000458:organization & administration*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007196:Indiana; D033181:Information Dissemination; D007407:Interviews as Topic; D008297:Male; D016347:Medical Records Systems, Computerized / Q000458:organization & administration*; D008875:Middle Aged; D020380:Needs Assessment; D010358:Patient Participation; D011369:Professional-Patient Relations; D036301:Qualitative Research