title: Public preferences about secondary uses of electronic health information.
abstract: OBJECTIVE
  As health information technology grows, secondary uses of personal health information offer promise in advancing research, public health, and health care. Public perceptions about sharing personal health data are important for establishing and evaluating ethical and regulatory structures to oversee the use of these data.
  
  
  OBJECTIVE
  To measure patient preferences about sharing their electronic health information for secondary purposes (other than their own health care).
  
  
  METHODS
  In this conjoint analysis study, we surveyed 3336 adults (568 Hispanic, 500 non-Hispanic African American, and 2268 non-Hispanic white); participants were randomized to 6 of 18 scenarios describing secondary uses of electronic health information, constructed with 3 attributes: uses (research, quality improvement, or commercial marketing), users (university hospitals, commercial enterprises, or public health departments), and data sensitivity (whether it included genetic information about their own cancer risk). This design enabled participants to reveal their preferences for secondary uses of their personal health information.
  
  
  METHODS
  Participants responded to each conjoint scenario by rating their willingness to share their electronic personal health information on a 1 to 10 scale (1 represents low willingness; 10, high willingness). Conjoint analysis yields importance weights reflecting the contribution of a dimension (use, user, or sensitivity) to willingness to share personal health information.
  
  
  RESULTS
  The use of data was a more important factor in the conjoint analysis (importance weight, 64.3%) than the user (importance weight, 32.6%) and data sensitivity (importance weight, 3.1%). In unadjusted linear regression models, marketing uses (β = -1.55), quality improvement uses (β = -0.51), drug company users (β = -0.80), and public health department users (β = -0.52) were associated with less willingness to share health information than research uses and university hospital users (all P < .001). Hispanics and African Americans differentiated less than whites between uses.
  
  
  CONCLUSIONS
  Participants cared most about the specific purpose for using their health information, although differences were smaller among racial and ethnic minorities. The user of the information was of secondary importance, and the sensitivity was not a significant factor. These preferences should be considered in policies governing secondary uses of health information.
authors: Division of General Internal Medicine, Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia2Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia.
authors: David
authors: D
authors: Grande
authors: Nandita
authors: N
authors: Mitra
authors: Anand
authors: A
authors: Shah
authors: Fei
authors: F
authors: Wan
authors: David A
authors: DA
authors: Asch
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D003219:Confidentiality; D057286:Electronic Health Records / Q000706:statistics & numerical data*; D005260:Female; D006801:Humans; D033181:Information Dissemination; D008297:Male; D008875:Middle Aged; D058996:Quality Improvement; D011795:Surveys and Questionnaires
references: J Med Ethics. 2004 Feb;30(1):104-9
references: 14872086
references: BMC Med Ethics. 2008 Nov 19;9:18
references: 19019239
references: J Health Polit Policy Law. 1998 Aug;23(4):661-86
references: 9718518
references: Soc Sci Med. 2001 Mar;52(5):797-808
references: 11218181
references: Health Aff (Millwood). 2013 Jan;32(1):63-8
references: 23297272
references: BMC Med Ethics. 2009 Jul 24;10:10
references: 19630941
references: Cell Tissue Bank. 2008 Mar;9(1):55-65
references: 17960495
references: Medicine (Baltimore). 2008 Jan;87(1):1-9
references: 18204365
references: JAMA. 2009 Apr 1;301(13):1373-5
references: 19336713
references: JAMA. 2009 Mar 25;301(12):1282-4
references: 19318657
references: J Gen Intern Med. 2008 Jun;23(6):727-32
references: 18369678
references: JAMA. 2000 Apr 5;283(13):1715-22
references: 10755498
references: Am J Public Health. 2010 Mar;100(3):407-12
references: 20075316
references: N Engl J Med. 2011 Sep 22;365(12):1145-50
references: 21787202
references: JAMA. 2009 Jul 1;302(1):67-72
references: 19567441
references: Ann Intern Med. 2003 Apr 1;138(7):571-5
references: 12667027
references: Int J Med Inform. 2006 Jul;75(7):530-41
references: 16198142
references: J Am Med Inform Assoc. 2007 Nov-Dec;14(6):706-12
references: 17712084
references: Soc Sci Med. 2007 Jan;64(1):223-35
references: 17045717
references: J Law Med Ethics. 1995 Winter;23(4):360-6
references: 8715056
references: Milbank Q. 2001;79(4):613-39, v
references: 11789119
references: Am J Med Genet A. 2007 Mar 15;143A(6):564-9
references: 17318844
references: Genet Med. 2004 Nov-Dec;6(6):510-6
references: 15545747
references: Ann Epidemiol. 2002 May;12(4):248-56
references: 11988413
references: J Health Serv Res Policy. 2004 Jan;9(1):22-7
references: 15006236
references: J Gen Intern Med. 1999 Sep;14(9):537-46
references: 10491242
references: Arch Intern Med. 2002 Nov 25;162(21):2458-63
references: 12437405
references: Am J Bioeth. 2011 Nov;11(11):1-7
references: 22047112