The benefits, risks and costs of privacy: patient preferences and willingness to pay

References

• Miller RH. Satisfying patient-consumer principles for health information exchange: evidence from California case studies. Health Affairs (Project Hope) 2012;31:537-47
   PubMed Web of Science ®Google Scholar
• Whiddett R, Hunter I, Engelbrecht J, Handy J. Patients’ attitudes towards sharing their health information. Int J Med Inform 2006;75:530-41
   PubMed Web of Science ®Google Scholar
• Patel VN, Dhopeshwarkar RV, Edwards A, et al. Consumer support for health information exchange and personal health records: a regional health information organization survey. J Med Syst 2012;36:1043-52
   PubMed Web of Science ®Google Scholar
• Wen KY, Kreps G, Zhu F, Miller S. Consumers’ perceptions about and use of the internet for personal health records and health information exchange: analysis of the 2007 Health Information National Trends Survey. J Med Internet Res 2010;12:e73
   PubMed Web of Science ®Google Scholar
• Beckjord EB, Rechis R, Nutt S, et al. What do people affected by cancer think about electronic health information exchange? Results from the 2010 LIVESTRONG Electronic Health Information Exchange Survey and the 2008 Health Information National Trends Survey. J Oncol Pract 2011;7:237-41
   PubMedGoogle Scholar
• Dimitropoulos L, Patel V, Scheffler SA, Posnack S. Public attitudes toward health information exchange: perceived benefits and concerns. Am J Manag Care 2011;17(12SpecNo.):SP111-16
   Google Scholar
• O’Donnell HC, Patel V, Kern LM, et al. Healthcare consumers’ attitudes towards physician and personal use of health information exchange. J Gen Intern Med 2011;26:1019-26
   PubMed Web of Science ®Google Scholar
• Ancker JS, Edwards AM, Miller MC, Kaushal R. Consumer perceptions of electronic health information exchange. Am J Prev Med 2012;43:76-80
   PubMed Web of Science ®Google Scholar
• Yaraghi N, Sharman R, Gopal R, et al. Drivers of information disclosure on health information exchange platforms: insights from an exploratory empirical study. J Am Med Informat Assoc 2015;22:1183-6
   PubMed Web of Science ®Google Scholar
• Patel V, Beckjord E, Moser RP, et al. The role of health care experience and consumer information efficacy in shaping privacy and security perceptions of medical records: national consumer survey results. JMIR Med Informat 2015;3:e14
   PubMed Web of Science ®Google Scholar
• van Walraven C, Taljaard M, Bell CM, et al. Information exchange among physicians caring for the same patient in the community. Can Med Assoc J 2008;179:1013-18
   Web of Science ®Google Scholar
• Smith PC, Araya-Guerra R, Bublitz C, et al. Missing clinical information during primary care visits. JAMA 2005;293:565-71
   PubMed Web of Science ®Google Scholar
• Burnett SJ, Deelchand V, Franklin BD, et al. Missing clinical information in NHS hospital outpatient clinics: prevalence, causes and effects on patient care. BMC Health Serv Res 2011;11:114
   PubMed Web of Science ®Google Scholar
• Machlin S, Cohen J, Elixhauser A, et al. Sensitivity of household reported medical conditions in the medical expenditure panel survey. Med Care 2009;47:618-25
   PubMedGoogle Scholar
• Bourgeois FC, Olson KL, Mandl KD. Patients treated at multiple acute health care facilities: quantifying information fragmentation. Arch Intern Med 2010;170:1989-95
   PubMedGoogle Scholar
• Finnell JT, Overhage JM, Grannis S. All health care is not local: an evaluation of the distribution of Emergency Department care delivered in Indiana. Proc Annual Symposium AMIA 2011;2011:409-16
   PubMedGoogle Scholar
• McGraw D, Dempsey JX, Harris L, Goldman J. Privacy as an enabler, not an impediment: building trust into health information exchange. Health Affairs (Project Hope 2009;28:416-27
   PubMed Web of Science ®Google Scholar
• Bourgeois FC, Taylor PL, Emans SJ, et al. Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients. J Am Med Informat Assoc 2008;15:737-43
   PubMed Web of Science ®Google Scholar
• Clemens NA. Privacy, consent, and the electronic mental health record: the person vs. the system. J Psychiatr Pract 2012;18:46-50
   PubMed Web of Science ®Google Scholar
• Tjora A, Tran T, Faxvaag A. Privacy vs usability: a qualitative exploration of patients’ experiences with secure Internet communication with their general practitioner. J Med Internet Res 2005;7:e15
   PubMed Web of Science ®Google Scholar
• Agaku IT, Adisa AO, Ayo-Yusuf OA, Connolly GN. Concern about security and privacy, and perceived control over collection and use of health information are related to withholding of health information from healthcare providers. J Am Med Informat Assoc 2014;21:374-8
   PubMed Web of Science ®Google Scholar
• Teixeira PA, Gordon P, Camhi E, Bakken S. HIV patients’ willingness to share personal health information electronically. Patient Educ Counsel 2011;84:e9-12
   PubMedGoogle Scholar
• Maiorana A, Steward WT, Koester KA, et al. Trust, confidentiality, and the acceptability of sharing HIV-related patient data: lessons learned from a mixed methods study about Health Information Exchanges. Implementation Sci 2012;7:34
   PubMed Web of Science ®Google Scholar
• Kessler RC, McGonagle KA, Zhao S, et al. Lifetime and 12-month prevalence of DSM-III-R psychiatric disorders in the United States. Results from the National Comorbidity Survey. Arch Gen Psychiatry 1994;51:8-19
   PubMed Web of Science ®Google Scholar
• Kripalani S, LeFevre F, Phillips CO, et al. Deficits in communication and information transfer between hospital-based and primary care physicians: implications for patient safety and continuity of care. JAMA 2007;297:831-41
   PubMed Web of Science ®Google Scholar
• DeWitt DE, Ward SA, Prabhu S, Warton B. Patient privacy versus protecting the patient and the health system from harm: a case study. Med J Aust 2009;191:213-16
   PubMed Web of Science ®Google Scholar
• Gandhi TK, Weingart SN, Borus J, et al. Adverse drug events in ambulatory care. N Engl J Med 2003;348:1556-64
   PubMed Web of Science ®Google Scholar
• Agarwal R, Sands DZ, Schneider JD. Quantifying the economic impact of communication inefficiencies in U.S. hospitals. J Healthc Manag 2010;55:265-81; discussion 281-262
   PubMed Web of Science ®Google Scholar
• Sridhar S, Brennan PF, Wright SJ, Robinson SM. Optimizing financial effects of HIE: a multi-party linear programming approach. J Am Med Informat Assoc 2012;19:1082-8
   PubMed Web of Science ®Google Scholar
• Hebel E, Middleton B, Shubina M, Turchin A. Bridging the chasm: effect of health information exchange on volume of laboratory testing. Arch Intern Med 2012;172:517-19
   PubMedGoogle Scholar
• Ozkaynak M, Brennan PF. Revisiting sociotechnical systems in a case of unreported use of health information exchange system in three hospital emergency departments. J Eval Clin Pract 2013;19:370-3
   PubMed Web of Science ®Google Scholar
• Bailey JE, Wan JY, Mabry LM, et al. Does health information exchange reduce unnecessary neuroimaging and improve quality of headache care in the emergency department? J Gen Intern Med 2013;28:176-83
   PubMed Web of Science ®Google Scholar
• Maenpaa T, Asikainen P, Gissler M, et al. Outcomes assessment of the regional health information exchange: a five-year follow-up study. Meth Inform Med 2011;50:308-18
   PubMed Web of Science ®Google Scholar