title: Public trust in health information sharing: implications for biobanking and electronic health record systems.
abstract: Biobanks are made all the more valuable when the biological samples they hold can be linked to health information collected in research, electronic health records, or public health practice. Public trust in such systems that share health information for research and health care practice is understudied. Our research examines characteristics of the general public that predict trust in a health system that includes researchers, health care providers, insurance companies and public health departments. We created a 119-item survey of predictors and attributes of system trust and fielded it using Amazon's MTurk system (n = 447). We found that seeing one's primary care provider, having a favorable view of data sharing and believing that data sharing will improve the quality of health care, as well as psychosocial factors (altruism and generalized trust) were positively and significantly associated with system trust. As expected, privacy concern, but counterintuitively, knowledge about health information sharing were negatively associated with system trust. We conclude that, in order to assure the public's trust, policy makers charged with setting best practices for governance of biobanks and access to electronic health records should leverage critical access points to engage a diverse public in joint decision making.
authors: Department of Health Management and Policy, University of Michigan School of Public Health, 1415 Washington Heights, Ann Arbor, MI 48109, USA. jeplatt@umich.edu.|Department of Learning Health Sciences, University of Michigan Medical School, 1111 E. Catherine Street, Ann Arbor, MI 48109, USA. jeplatt@umich.edu.
authors: Jodyn
authors: J
authors: Platt
authors: Department of Epidemiology, University of Michigan School of Public Health, 1415 Washington Heights, Ann Arbor, MI 48109, USA. skardia@umich.edu.
authors: Sharon
authors: S
authors: Kardia
references: J Pers Med. 2014 Nov 20;4(4):459-74
references: 25563457
references: Am J Hum Genet. 2009 Nov;85(5):643-54
references: 19878915
references: J Community Genet. 2014 Apr;5(2):125-38
references: 23893769
references: Sci Transl Med. 2014 Apr 30;6(234):234cm3
references: 24786321
references: BMC Med Genomics. 2011 Jan 26;4:13
references: 21269473
references: Hum Genet. 2011 Sep;130(3):383-92
references: 21739176
references: J Appl Psychol. 2007 Jul;92(4):909-27
references: 17638454
references: J Community Genet. 2014 Oct;5(4):349-62
references: 24916145
references: Risk Anal. 2012 Aug;32(8):1394-403
references: 22150405
references: Int J Med Inform. 2007 May-Jun;76(5-6):471-9
references: 17204451
references: BMJ. 2014 Feb 05;348:g1294
references: 24500352
references: Health Serv Res. 2009 Dec;44(6):2093-105
references: 19732170
references: N Engl J Med. 2013 Jan 3;368(1):1-3
references: 23234473
references: Public Health Rep. 2003 Jul-Aug;118(4):358-65
references: 12815085
references: Public Health Genomics. 2015;18(1):26-39
references: 25359560
references: Public Underst Sci. 2013 Jul;22(5):624-41
references: 23833175
references: J Gen Intern Med. 2001 Feb;16(2):100-11
references: 11251761
references: Health Serv Res. 2002 Feb;37(1):187-202
references: 11949920
references: Perspect Psychol Sci. 2011 Jan;6(1):3-5
references: 26162106
references: BMC Med Ethics. 2009 Jul 24;10:10
references: 19630941
references: Risk Anal. 2000 Apr;20(2):195-203
references: 10859780
references: Am J Bioeth. 2007 Jun;7(6):4-7
references: 17558977
references: Hastings Cent Rep. 2013 Jan-Feb;Spec No:S16-27
references: 23315888
references: J Empir Res Hum Res Ethics. 2014 Dec;9(5):16-24
references: 25747687
references: Pharmacoepidemiol Drug Saf. 2011 Jan;20(1):1-11
references: 21182150
references: J Community Genet. 2014 Jul;5(3):205-13
references: 24307509
references: Genet Med. 2012 Feb;14 (2):229-35
references: 22261752
references: Nat Rev Genet. 2011 Jun;12(6):417-28
references: 21587298
references: N Engl J Med. 2013 Mar 14;368(11):977-9
references: 23444980
references: Clin Pharmacol Ther. 2008 Sep;84(3):362-9
references: 18500243
references: Public Health Genomics. 2012;15(3-4):146-55
references: 22488457
references: Health Serv Res. 2002 Oct;37(5):1419-39
references: 12479504
references: Milbank Q. 2001;79(4):613-39, v
references: 11789119
references: J Am Med Inform Assoc. 2013 Jan 1;20(1):2-6
references: 23221359
references: Soc Sci Med. 2012 Nov;75(9):1604-11
references: 22867865
references: Eur J Hum Genet. 2015 Feb;23(2):141-6
references: 24801761
references: Health Serv Res. 2006 Feb;41(1):58-78
references: 16430601
references: J Law Med Ethics. 2003 Fall;31(3):429-33
references: 14626550
references: Soc Sci Med. 2013 Aug;91:10-4
references: 23849233
references: Mayo Clin Proc. 2013 Sep;88(9):952-62
references: 24001487
references: Genet Med. 2013 Oct;15(10):792-801
references: 24030437
references: Med Care Res Rev. 2002 Sep;59(3):293-318
references: 12205830