title: Factors affecting willingness to share electronic health data among California consumers.
abstract: Robust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers' views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers' willingness to share electronic health information for healthcare and research.
  
  
  
  This study involved a random-digit dial telephone survey of 800 adult Californians conducted in English and Spanish. Logistic regression was performed using backward selection to test for significant (p-value ≤ 0.05) associations of each explanatory variable with the outcome variable.
  
  
  
  The odds of consent for electronic data sharing for healthcare decreased as Likert scale ratings for EHR impact on privacy worsened, odds ratio (OR) = 0.74, 95% CI [0.60, 0.90]; security, OR = 0.80, 95% CI [0.66, 0.98]; and quality, OR = 0.59, 95% CI [0.46-0.75]. The odds of consent for sharing for research was greater for those who think EHR will improve research quality, OR = 11.26, 95% CI [4.13, 30.73]; those who value research benefit over privacy OR = 2.72, 95% CI [1.55, 4.78]; and those who value control over research benefit OR = 0.49, 95% CI [0.26, 0.94].
  
  
  
  Consumers' choices about electronically sharing health information are affected by their attitudes toward EHRs as well as beliefs about research benefit and individual control. Design of person-centered interventions utilizing electronically collected health information, and policies regarding data sharing should address these values of importance to people. Understanding of these perspectives is critical for leveraging health data to support learning health care systems.
authors.affiliation: University of California Davis, Betty Irene Moore School of Nursing, 2450 48th Street, Suite 2600, Sacramento, CA, 95817, USA. kathykim@ucdavis.edu.
authors.forename: Katherine K
authors.identifier: 0000-0001-5766-3938
authors.initials: KK
authors.lastname: Kim
authors.affiliation: Department of Medical Ethics and Health Policy, University of Pennsylvania, 423 Guardian Drive, Blockley, 14, Philadelphia, PA19104-4884, USA.
authors.forename: Pamela
authors.initials: P
authors.lastname: Sankar
authors.affiliation: Department of Public Health Sciences, Division of Biostatistics, Clinical and Translational Science Center, University of California Davis, 2921 Stockton Blvd, suite 1400, Sacramento, CA, 95817, USA.
authors.forename: Machelle D
authors.initials: MD
authors.lastname: Wilson
authors.affiliation: University of California Davis, Betty Irene Moore School of Nursing, 2450 48th Street, Suite 2600, Sacramento, CA, 95817, USA.
authors.forename: Sarah C
authors.initials: SC
authors.lastname: Haynes
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000533:Altruism; D001290:Attitude; D002140:California; D002755:Choice Behavior; D003219:Confidentiality; D003258:Consumer Behavior; D057286:Electronic Health Records; D032984:Ethics, Research; D005260:Female; D006801:Humans; D033181:Information Dissemination; D007258:Informed Consent; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D009042:Motivation; D016017:Odds Ratio; D018907:Privacy; D012107:Research Design; D035502:Trust; D055815:Young Adult
keywords: Consent; Distributed research network; Electronic health records; Ethics; Health information exchange; Learning healthcare systems