title: International perspectives on sharing clinical data with patients.
abstract: OBJECTIVE
  Engaging patients in their care has become a topic of increasing importance, and enabling patients to have access to their clinical data is a key aspect of such engagement. We investigated, on an international scale, the current state of approaches for providing patients with access to their own clinical information.
  
  
  METHODS
  Individuals from 28 countries were invited to participate in a cross-sectional semi-structured interview. Interview questions focused on social and cultural influences that affected patient engagement activities, government support for current and planned initiatives, data ownership models, and technical issues.
  
  
  RESULTS
  Interviews were conducted with individuals from 16 countries representing six continents. Respondents reported substantive initiatives for providing information to patients in the majority of countries interviewed. These initiatives were diverse in nature and stage of implementation.
  
  
  CONCLUSIONS
  Enabling patient access to data is occurring on an international scale. There is considerable variability in the level of maturity, the degree of government involvement, the technical infrastructure, and the plans for future development across the world. As informaticians, we are still in the early stages of deploying patient engagement technologies and have yet to identify optimal strategies in this arena.
  
  
  CONCLUSIONS
  Efforts to improve patient access to data are active on a global-scale. There are many open questions about best practices and much can be learned by adopting an international perspective to guide future implementation efforts.
authors.affiliation: Department of Biomedical Informatics, Columbia University, 622 W. 168th St. PH-20, New York, NY, USA. Electronic address: jep2175@cumc.columbia.edu.
authors.forename: Jennifer E
authors.initials: JE
authors.lastname: Prey
authors.affiliation: Department of Biomedical Informatics, Columbia University, 622 W. 168th St. PH-20, New York, NY, USA.
authors.forename: Fernanda
authors.initials: F
authors.lastname: Polubriaginof
authors.affiliation: Department of Biomedical Informatics, Columbia University, 622 W. 168th St. PH-20, New York, NY, USA; NewYork-Presbyterian Hospital, 622 W. 168th St. PH-20, New York, NY, USA.
authors.forename: Gilad J
authors.initials: GJ
authors.lastname: Kuperman
authors.affiliation: NewYork-Presbyterian Hospital, 622 W. 168th St. PH-20, New York, NY, USA.
authors.forename: Victoria
authors.initials: V
authors.lastname: Tiase
authors.affiliation: Partners Healthcare and Harvard Medical School, 101Huntington Ave, 4thfloor, Boston, MA, USA.
authors.forename: Sarah A
authors.initials: SA
authors.lastname: Collins
authors.affiliation: Department of Biomedical Informatics, Columbia University, 622 W. 168th St. PH-20, New York, NY, USA; NewYork-Presbyterian Hospital, 622 W. 168th St. PH-20, New York, NY, USA.
authors.forename: David K
authors.initials: DK
authors.lastname: Vawdrey
mesh_terms: D022126:Access to Information; D003430:Cross-Sectional Studies; D016208:Databases, Factual; D057286:Electronic Health Records; D006801:Humans; D033181:Information Dissemination; D038622:Internationality; D010067:Ownership
keywords: Consumer health information; Health information technology; International perspectives; Patients; Personal health records