title: Giving patients granular control of personal health information: using an ethics 'Points to Consider' to inform informatics system designers.
abstract: OBJECTIVE
  There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this.
  
  
  METHODS
  We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a "Points to Consider" (P2C) document, and convened a national expert panel to review and critique the P2C.
  
  
  RESULTS
  We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions ("Points") that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care.
  
  
  CONCLUSIONS
  The P2C is intended to clarify what is at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion.
authors.affiliation: Indiana University Center for Bioethics, Indianapolis, United States; Department of Medicine, Indiana University School of Medicine, United States; Indiana University Center for Law, Ethics, and Applied Research in Health Information (CLEAR), Indianapolis, United States; Philosophy Department, Indiana University - Purdue University, Indianapolis, United States. Electronic address: emeslin@iu.edu.
authors.forename: Eric M
authors.initials: EM
authors.lastname: Meslin
authors.forename: Sheri A
authors.initials: SA
authors.lastname: Alpert
authors.forename: Aaron E
authors.initials: AE
authors.lastname: Carroll
authors.forename: Jere D
authors.initials: JD
authors.lastname: Odell
authors.forename: William M
authors.initials: WM
authors.lastname: Tierney
authors.forename: Peter H
authors.initials: PH
authors.lastname: Schwartz
mesh_terms: D022126:Access to Information; D016494:Computer Security; D003219:Confidentiality / Q000941:ethics; D006801:Humans; D019451:Information Management / Q000458:organization & administration*; D008492:Medical Informatics Computing / Q000941:ethics*; D016347:Medical Records Systems, Computerized / Q000592:standards*; D033283:Patient Access to Records / Q000592:standards*; D012985:Software Design
keywords: Computerized; Electronic health records; Ethics; Medical records systems; Patient access to records; Physician–patient relations; Privacy