title: Comparison of consumers' views on electronic data sharing for healthcare and research.
abstract: New models of healthcare delivery such as accountable care organizations and patient-centered medical homes seek to improve quality, access, and cost. They rely on a robust, secure technology infrastructure provided by health information exchanges (HIEs) and distributed research networks and the willingness of patients to share their data. There are few large, in-depth studies of US consumers' views on privacy, security, and consent in electronic data sharing for healthcare and research together.
  
  
  OBJECTIVE
  This paper addresses this gap, reporting on a survey which asks about California consumers' views of data sharing for healthcare and research together.
  
  
  METHODS
  The survey conducted was a representative, random-digit dial telephone survey of 800 Californians, performed in Spanish and English.
  
  
  RESULTS
  There is a great deal of concern that HIEs will worsen privacy (40.3%) and security (42.5%). Consumers are in favor of electronic data sharing but elements of transparency are important: individual control, who has access, and the purpose for use of data. Respondents were more likely to agree to share deidentified information for research than to share identified information for healthcare (76.2% vs 57.3%, p < .001).
  
  
  CONCLUSIONS
  While consumers show willingness to share health information electronically, they value individual control and privacy. Responsiveness to these needs, rather than mere reliance on Health Insurance Portability and Accountability Act (HIPAA), may improve support of data networks.
  
  
  CONCLUSIONS
  Responsiveness to the public's concerns regarding their health information is a pre-requisite for patient-centeredness. This is one of the first in-depth studies of attitudes about electronic data sharing that compares attitudes of the same individual towards healthcare and research.
authors.affiliation: Betty Irene Moore School of Nursing, University of California Davis, Sacramento, CA 95817 USA kathykim@ucdavis.edu.
authors.forename: Katherine K
authors.initials: KK
authors.lastname: Kim
authors.affiliation: Betty Irene Moore School of Nursing, University of California Davis, Sacramento, CA, USA.
authors.forename: Jill G
authors.initials: JG
authors.lastname: Joseph
authors.affiliation: Division of Biomedical Informatics, Department of Medicine and Clinical Translational Research Institute, University of, California San Diego, San Diego, CA, USA.
authors.forename: Lucila
authors.initials: L
authors.lastname: Ohno-Machado
mesh_terms: D001294:Attitude to Health; D002140:California; D016494:Computer Security; D003219:Confidentiality; D057286:Electronic Health Records; D066275:Health Information Exchange; D006801:Humans; D033181:Information Dissemination; D011639:Public Opinion; D011795:Surveys and Questionnaires
keywords: consent; distributed research network; health information exchange; patient-centered; privacy
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