Public preferences about secondary uses of electronic health information

JAMA Internal Medicine

Volumn 173, Issue 19, 2013, Pages 1798-1806

  Grande, David ^a,b   Mitra, Nandita ^a   Shah, Anand ^c   Wan, Fei ^a   Asch, David A ^a,b,d  

^a UNIVERSITY OF PENNSYLVANIA   (United States)

^b UNIVERSITY OF PENNSYLVANIA   (United States)

^c UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER   (United States)

^d VETERANS AFFAIRS MEDICAL CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AFRICAN AMERICAN; ARTICLE; CANCER RISK; CONTROLLED STUDY; ELECTRONIC MEDICAL RECORD; ETHNIC DIFFERENCE; FEMALE; HISPANIC; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION; MEDICAL RESEARCH; PATIENT ATTITUDE; PATIENT INFORMATION; PATIENT PREFERENCE; PRIORITY JOURNAL; PUBLIC HEALTH SERVICE; SOCIAL MARKETING; TOTAL QUALITY MANAGEMENT; UNIVERSITY HOSPITAL;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; CONFIDENTIALITY; ELECTRONIC HEALTH RECORDS; FEMALE; HUMANS; INFORMATION DISSEMINATION; MALE; MIDDLE AGED; QUALITY IMPROVEMENT; QUESTIONNAIRES;

EID: 84887063938     PISSN: 21686106     EISSN: None     Source Type: Journal    
DOI: 10.1001/jamainternmed.2013.9166     Document Type: Article

References (44)

1. King J. Patel V. Furukawa M. Physician Adoption of Electronic Health Record Technology to Meet Meaningful Use Objectives: 2009-2012: ONC Data Brief No. 7. Washington, DC: Office of the National Coordinator for Health Information Technology; 2012.
2. Kellermann AL. Jones SS. What it will take to achieve the as-yet-unfulfilled promises of health information technology. Health Aff (Millwood). 2013;32(l): 63-68.
3. Hall MA, Schulman KA. Ownership of medical information. JAMA. 2009;301(12): 1282-1284.
4. Schaefer GO, Emanuel EJ, Wertheimer A. The obligation to participate in biomedical research. JAMA. 2009;302(1): 67-72.
5. Emanuel EJ, Menikoff J. Reformingthe regulations governing research with human subjects. N Engl J Med. 2011;365(12): 1145-1150.
6. Rhodes R, Azzouni J. Baumrin SB, et al. De minimis risk: a proposal for a new category of research risk. Am J Bioeth. 2011;11(11): 1-7.
7. Wartenberg D, Thompson WD. Privacy versus public health: the impact of current confidentiality rules. Am J Public Health. 2010;100(3): 407-412.
8. Committee on Health Research and the Privacy of Health Information. The HIPAA Privacy Rule: Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research. Washington, DC: National Academies Press: 2009.
9. Gostin LO, Nass S. Reformingthe HIPAA Privacy Rule: safeguarding privacy and promoting research. JAMA. 2009;301(13): 1373-1375.
10. Robling MR, Hood K, Houston H, Pill R, Fay J. Evans HM. Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study. J Med Ethics. 2004;30(1): 104-109.
11. Whiddett R, Hunter I, Engelbrecht J, Handy J. Patients' attitudes towards sharing their health information. Int J Med Inform. 2006;75(7): 530-541.
12. Green P. Srinivasan V. Conjoint analysis in consumer research: issues and outlook. J Consum Res. 1978: 5: 103-123.
13. Green P. Srinivasan V. Conjoint analysis in marketing: new developments with implications for research and practice. J Mark. 1990;54: 3-19.
14. Green PE, Rao VR. Conjoint measurement for quantifying judgmental data. J Mark Res. 1971;8: 355-363.
15. Markle Foundation. Survey finds Americans want electronic personal health information to improve own health care: 2006. http://www .markle.org/ publications/1214-survey-finds -americans-want-electronic-personal-health -information-improve-own-hea. Accessed July 2, 2013.
16. Damschroder U, PrittsJL, Neblo MA, Kalarickal RJ, Creswell JW, Hayward RA. Patients, privacy and trust: patients' willingness to allow researchers to access their medical records. SocSciMed. 2007;64(1): 223-235.
17. Nair K. Willison D. Holbrook A. Keshavjee K. Patients' consent preferences regarding the use of their health information for research purposes: a qualitative study. J Health Serv Res Policy. 2004;9(1): 22-27.
18. Willison DJ, Schwartz L, Abelson J, et al. Alternatives to project-specific consent for access to personal information for health research: what is the opinion of the Canadian public? J Am Med Inform Assoc. 2007;14(6): 706-712.
19. Willison D. Steeves V. Charles C. et al. Consent for use of personal information for health research: do people with potentially stigmatizing health conditions and the general public differ in their opinions? BMC Med Ethics. 2009: 10: 10. doi:10.1186/1472-6939-10-10.
20. Willison DJ. Swinton M, Schwartz L. et al. Alternatives to project-specific consent for access to personal information for health research: insights from a public dialogue. BMC Med Ethics. 2008: 9: 18. doi:10.1186/1472-6939-9-18.
21. Pulley JM, Brace MM, Bernard GR, Masys DR. Attitudes and perceptions of patients towards methods of establishing a DNA biobank. Cell Tissue Bank. 2008;9(1): 55-65.
22. Apse KA, Biesecker BB. Giardiello FM. Fuller BP, Bernhardt BA. Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients. Genet Med. 2004;6(6): 510-516.
23. LowranceWW.SummaryoftheNHGRI workshop on privacy, confidentiality and identif iability in genomic research: 2006. http://www.genome.gov/19519198. Accessed March 17,2013.
24. Center for Public Health and Community Genomics and the Genetic Alliance. 2012-2017: Priorities for public health genomics: 2011. http://genomicsforum. org/files/geno-report.WEB -w-RFI-1122rev.pdf. Accessed March 17,2013.
25. Braunstein JB, Sherber NS. Schulman SP, Ding EL, Powe NR. Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials. Medicine (Baltimore). 2008;87(1): 1-9.
26. Corbie-Smith G, Thomas SB, St George DM. Distrust, race, and research. Arch Intern Med. 2002;162(21): 2458-2463.
27. Corbie-Smith G, Thomas SB, Williams MV. Moody-Ayers S. Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med. 1999;14(9): 537-546.
28. Freimuth VS, Quinn SC, Thomas SB, Cole G, Zook E, Duncan T. African Americans' views on research and the Tuskegee Syphilis Study. SocSci Med. 2001;52(5): 797-808.
29. GfK Knowledge Networks. KnowledgePanel design summary, http://www.knowledgenetworks.com /knpanel/docs/knowledgePanel(R)-design-summary -description.pdf. Accessed March 17,2013.
30. GfK Knowledge Networks. KnowledgePanel demographic profile: February 2012. http://www .knowledgenetworks.com/knpanel/docs/GfK -KnowledgePanel(R)- Demographic -Profile.pdf. Accessed May 21,2013.
31. Yeager DS. Krosnick JA, Chang L, et al. Comparing the accuracy of RDD telephone surveys and Internet surveys conducted with probability and non-probability samples. Public Opin Q. 2011;75(4): 709-747.
32. Centers for Disease Control and Prevention. Behavioral Risk Factor Surveillance System: questionnaires, http://www.cdc.gov/brfss /questionnaires.htm. Accessed July 5.2013.
33. National Health Interview Survey questionnaires, datasets, and related documentation: 1997 to the present. http://www.cdc.gov/nchs/nhis/quest-data- related -1997-forward.htm. Accessed July 5,2013.
34. Shea JA, Micco E, Dean LT, McMurphy S, Schwartz JS, Armstrong K. Development of a revised health care system distrust scale. J Gen Intern Med. 2008;23(6): 727-732.
35. Hall MA, Dugan E, Zheng B, Mishra AK. Trust in physicians and medical institutions: what is it, can it be measured, and does it matter? Milbank Q. 2001;79(4): 613-639; V.
36. Mechanic D. The functions and limitations of trust in the provision of medical care. J Health Polit Policy Law. 1998;23(4): 661-686.
37. Davis J, Smith T, Marsden P. General Social Surveys, 1972-2008: Cumulative Codebook. Chicago. IL: National Opinion Research Center: 2009.
38. Kuhfeld WF. Marketing research methods in SAS: 2010. http://support.sas. com/resources /papers/tnote/tnote-marketresearch.html. Accessed May 21,2013.
39. Annas GJ, Glantz LH, Roche PA. Drafting the Genetic Privacy Act: science, policy, and practical considerations. J Law Med Ethics. 1995;23(4): 360-366.
40. Murray T. Genetic exceptionalism and "future diaries": is genetic information different from other medical information? In: Rothstein M, ed. Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. New Haven. CT: Yale University Press; 1997: 60-73.
41. Green MJ, Botkin JR. "Genetic exceptionalism" in medicine: clarifying the differences between genetic and nongenetic tests. Ann Intern Med. 2003;138C7): 571-575.
42. Diergaarde B, Bowen DJ, Ludman EJ, Culver JO, Press N. Burke W. Genetic information: special or not? responses from focus groups with members of a health maintenance organization. Am J Med Genet A. 2007;143(6): 564-569.
43. Shavers VL, Lynch CF. Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol. 2002;12(4): 248-256.
44. Peabody JW, Luck J, Glassman P, Dresselhaus TR, Lee M. Comparison of vignettes, standardized patients, and chart abstraction: a prospective validation study of 3 methods for measuring quality. JAMA. 2000;283(13): 1715-1722.