title: Satisfying patient-consumer principles for health information exchange: evidence from California case studies.
abstract: In June 2010 sixteen organizations representing California patients and consumers adopted nine principles for electronically exchanging health information among and within provider organizations. The principles were formulated with the goal of improving patient and population health care by increasing the availability and use of patient data while protecting patients' privacy. This study assesses to what extent five health care organizations-all in different stages of increasing their capacity for health information exchange-conformed to the principles in early 2011. Although an increasing amount of electronic data has been exchanged among organizations and with patients, progress has been modest, and patients still have little control over their data. For organizations to comply with all nine patient and consumer principles, clear "rules of the road" for information sharing must be defined, and patient education in health information exchange and control over personal data must be increased.
authors.affiliation: Institute for Health and Aging at the University of California, San Francisco, CA, USA. robert.miller@ucsf.edu
authors.forename: Robert H
authors.initials: RH
authors.lastname: Miller
mesh_terms: D057171:American Recovery and Reinvestment Act; D002140:California; D003258:Consumer Behavior; D003695:Delivery of Health Care / Q000191:economics / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D057286:Electronic Health Records / Q000191:economics / Q000331:legislation & jurisprudence / Q000592:standards*; D006801:Humans; D033181:Information Dissemination / Q000331:legislation & jurisprudence / Q000379:methods*; D019982:Organizational Case Studies; D012052:Reimbursement, Incentive / Q000331:legislation & jurisprudence; D014481:United States