Methods Inf Med 2020; 59(04/05): 162-178
DOI: 10.1055/s-0040-1721784
Original Article

Patients' Perceptions of Different Information Exchange Mechanisms: An Exploratory Study in the United States

Pouyan Esmaeilzadeh
1   Department of Information Systems and Business Analytics, College of Business, Florida International University (FIU), Miami, Florida, United States
› Author Affiliations
Funding None.

Abstract

Background Patients may seek health care services from various providers during treatment. These providers could serve in a network (affiliated) or practice separately (unaffiliated). Thus, using secure and reliable health information exchange (HIE) mechanisms would be critical to transfer sensitive personal health information (PHI) across distances. Studying patients' perceptions and opinions about exchange mechanisms could help health care providers build more complete HIEs' databases and develop robust privacy policies, consent processes, and patient education programs.

Objectives Due to the exploratory nature of this study, we aim to shed more light on public perspectives (benefits, concerns, and risks) associated with the four data exchange practices in the health care sector.

Methods In this study, we compared public perceptions and expectations regarding four common types of exchange mechanisms used in the United States (i.e., traditional, direct, query-based, patient-mediated exchange mechanisms). Traditional is an exchange through fax, paper mailing, or phone calls, direct is a provider-to-provider exchange, query-based is sharing patient data with a central repository, and patient-mediated is an exchange mechanism in which patients can access data and monitor sharing. Data were collected from 1,624 subjects using an online survey to examine the benefits, risks, and concerns associated with the four exchange mechanisms from patients' perspectives.

Results Findings indicate that several concerns and risks such as privacy concerns, security risks, trust issues, and psychological risks are raised. Besides, multiple benefits such as access to complete information, communication improvement, timely and convenient information sharing, cost-saving, and medical error reduction are highlighted by respondents. Through consideration of all risks and benefits associated with the four exchange mechanisms, the direct HIE mechanism was selected by respondents as the most preferred mechanism of information exchange among providers. More than half of the respondents (56.18%) stated that overall they favored direct exchange over the other mechanisms. 42.70% of respondents expected to be more likely to share their PHI with health care providers who implemented and utilized a direct exchange mechanism. 43.26% of respondents believed that they would support health care providers to leverage a direct HIE mechanism for sharing their PHI with other providers. The results exhibit that individuals expect greater benefits and fewer adverse effects from direct HIE among health care providers. Overall, the general public sentiment is more in favor of direct data transfer. Our results highlight that greater public trust in exchange mechanisms is required, and information privacy and security risks must be addressed before the widespread implementation of such mechanisms.

Conclusion This exploratory study's findings could be interesting for health care providers and HIE policymakers to analyze how consumers perceive the current exchange mechanisms, what concerns should be addressed, and how the exchange mechanisms could be modified to meet consumers' needs.

Supplementary Material



Publication History

Received: 24 August 2020

Accepted: 23 November 2020

Article published online:
22 February 2021

© 2021. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 
  • References

  • 1 Cherry JC, Dryden K, Kobb R, Hilsen P, Nedd N. Opening a window of opportunity through technology and coordination: a multisite case study. Telemed J.E. Health 2003; 9 (03) 265-271
  • 2 Dixon BE, Rahurkar S, Apathy NC. Interoperability and Health Information Exchange for Public Health. Public Health Informatics and Information Systems. Switzerland: Springer Nature; 2020: 307-324
  • 3 Dimitropoulos L, Patel V, Scheffler SA, Posnack S. Public attitudes toward health information exchange: perceived benefits and concerns. Am J Manag Care 2011; 17 (12 Spec No.): SP111-SP116
  • 4 Hatef E, Weiner JP, Kharrazi H. A public health perspective on using electronic health records to address social determinants of health: the potential for a national system of local community health records in the United States. Int J Med Inform 2019; 124: 86-89
  • 5 Esmaeilzadeh P, Mirzaei T. Comparison of consumers' perspectives on different health information exchange (HIE) mechanisms: an experimental study. Int J Med Inform 2018; 119: 1-7
  • 6 Myers JJ, Koester KA, Chakravarty D. et al. Perceptions regarding the ease of use and usefulness of health information exchange systems among medical providers, case managers and non-clinical staff members working in HIV care and community settings. Int J Med Inform 2012; 81 (10) e21-e29
  • 7 Vest JR, Kern LM, Silver MD, Kaushal R. HITEC investigators. The potential for community-based health information exchange systems to reduce hospital readmissions. J Am Med Inform Assoc 2015; 22 (02) 435-442
  • 8 Kuperman GJ. Health-information exchange: why are we doing it, and what are we doing?. J Am Med Inform Assoc 2011; 18 (05) 678-682
  • 9 Campion Jr TR, Edwards AM, Johnson SB, Kaushal R. HITEC investigators. Health information exchange system usage patterns in three communities: practice sites, users, patients, and data. Int J Med Inform 2013; 82 (09) 810-820
  • 10 Cimino JJ, Frisse ME, Halamka J, Sweeney L, Yasnoff W. Consumer-mediated health information exchanges: the 2012 ACMI debate. J Biomed Inform 2014; 48: 5-15
  • 11 Eden KB, Totten AM, Kassakian SZ. et al. Barriers and facilitators to exchanging health information: a systematic review. Int J Med Inform 2016; 88: 44-51
  • 12 Wright A, Soran C, Jenter CA, Volk LA, Bates DW, Simon SR. Physician attitudes toward health information exchange: results of a statewide survey. J Am Med Inform Assoc 2010; 17 (01) 66-70
  • 13 Yeager VA, Walker D, Cole E, Mora AM, Diana ML. Factors related to health information exchange participation and use. J Med Syst 2014; 38 (08) 78
  • 14 Esmaeilzadeh P, Sambasivan M. Patients' support for health information exchange: a literature review and classification of key factors. BMC Med Inform Decis Mak 2017; 17 (01) 33
  • 15 Thorn SA, Carter MA, Bailey JE. Emergency physicians' perspectives on their use of health information exchange. Ann Emerg Med 2014; 63 (03) 329-337
  • 16 Messer LC, Parnell H, Huffaker R, Wooldredge R, Wilkin A. The development of a health information exchange to enhance care and improve patient outcomes among HIV+ individuals in rural North Carolina. Int J Med Inform 2012; 81 (10) e46-e55
  • 17 Kierkegaard P, Kaushal R, Vest JR. How could health information exchange better meet the needs of care practitioners?. Appl Clin Inform 2014; 5 (04) 861-877
  • 18 Esmaeilzadeh P. The impact of the privacy policy of Health Information Exchange (HIE) on patients' information disclosure intention. Comput Secur 2020; 95: 101819
  • 19 Mello MM, Adler-Milstein J, Ding KL, Savage L. Legal barriers to the growth of health information exchange—boulders or pebbles?. Milbank Q 2018; 96 (01) 110-143
  • 20 Schmit CD, Wetter SA, Kash BA. Falling short: how state laws can address health information exchange barriers and enablers. J Am Med Inform Assoc 2018; 25 (06) 635-644
  • 21 Apathy NC, Holmgren AJ. Opt-in consent policies: potential barriers to hospital health information exchange. Am J Manag Care 2020; 26 (01) e14-e20
  • 22 Milken Institute School of Public Health. 2016 State HIE Consent Policies: Opt-In or Opt-Out healthit. Access date: November 21, 2020 at: https://www.healthit.gov/sites/default/files/State%20HIE%20Opt-In%20vs%20Opt-Out%20Policy%20Research_09-30-16_Final.pdf
  • 23 Tripathi M, Delano D, Lund B, Rudolph L. Engaging patients for health information exchange. Health Aff (Millwood) 2009; 28 (02) 435-443
  • 24 Dimitropoulos L, Rizk S. A state-based approach to privacy and security for interoperable health information exchange. Health Aff (Millwood) 2009; 28 (02) 428-434
  • 25 Cundy PR, Hassey A. To opt in or opt out of electronic patient records? Isle of Wight and Scottish projects are not opt out schemes. BMJ 2006; 333 (7559): 146
  • 26 Wilkinson J. Patients should have to opt out of national electronic care records: what's all the fuss about?. BMJ 2006; 333 (7557): 42-43
  • 27 Angst CM, Agarwal R. Adoption of electronic health records in the presence of privacy concerns: the elaboration likelihood model and individual persuasion. Manage Inf Syst Q 2009; 33 (02) 339-370
  • 28 Davoody N, Koch S, Krakau I, Hägglund M. Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform—a case study. BMC Med Inform Decis Mak 2019; 19 (01) 95
  • 29 Patel V, Abramson EL, Edwards A, Malhotra S, Kaushal R. Physicians' potential use and preferences related to health information exchange. Int J Med Inform 2011; 80 (03) 171-180
  • 30 Park H, Lee SI, Kim Y. et al. Patients' perceptions of a health information exchange: a pilot program in South Korea. Int J Med Inform 2013; 82 (02) 98-107
  • 31 Stewart KA, Segars AH. An empirical examination of the concern for information privacy instrument. Inf Syst Res 2002; 13 (01) 36-49
  • 32 Lam PE, Mitchell JC, Sundaram S. A Formalization of HIPAA for a Medical Messaging System. Berlin Heidelberg: Springer-Verlag; 2009: 73-85
  • 33 Komiak SY, Benbasat I. The effects of personalization and familiarity on trust and adoption of recommendation agents. Manage Inf Syst Q 2006; 30: 941-960
  • 34 Mpinganjira M. Precursors of trust in virtual health communities: a hierarchical investigation. Inf Manage 2018; 55 (06) 686-694
  • 35 De Pietro C, Francetic I. E-health in Switzerland: the laborious adoption of the federal law on electronic health records (EHR) and health information exchange (HIE) networks. Health Policy 2018; 122 (02) 69-74
  • 36 Furukawa MF, Patel V, Charles D, Swain M, Mostashari F. Hospital electronic health information exchange grew substantially in 2008-12. Health Aff (Millwood) 2013; 32 (08) 1346-1354
  • 37 Frisse ME, Johnson KB, Nian H. et al. The financial impact of health information exchange on emergency department care. J Am Med Inform Assoc 2012; 19 (03) 328-333
  • 38 Cochran GL, Lander L, Morien M. et al. Consumer opinions of health information exchange, e-prescribing, and personal health records. Perspect Health Inf Manag 2015; 12 (Fall): 1e
  • 39 Kaelber DC, Bates DW. Health information exchange and patient safety. J Biomed Inform 2007; 40 (Suppl. 06) S40-S45
  • 40 Forsythe SM, Shi B. Consumer patronage and risk perceptions in internet shopping. J Bus Res 2003; 56 (11) 867-875
  • 41 Ancker JS, Edwards AM, Miller MC, Kaushal R. Consumer perceptions of electronic health information exchange. Am J Prev Med 2012; 43 (01) 76-80
  • 42 Dhopeshwarkar RV, Kern LM, O'Donnell HC, Edwards AM, Kaushal R. Health care consumers' preferences around health information exchange. Ann Fam Med 2012; 10 (05) 428-434
  • 43 Marge M, Banerjee S, Rudnicky AI. Using the Amazon Mechanical Turk for Transcription of Spoken Language. Dallas, TX, USA: IEEE; 2010: 5270-5273
  • 44 Behrend TS, Sharek DJ, Meade AW, Wiebe EN. The viability of crowdsourcing for survey research. Behav Res Methods 2011; 43 (03) 800-813
  • 45 Casler K, Bickel L, Hackett E. Separate but equal? A comparison of participants and data gathered via Amazon's MTurk, social media, and face-to-face behavioral testing. Comput Human Behav 2013; 29 (06) 2156-2160
  • 46 Mortensen K, Hughes TL. Comparing Amazon's Mechanical Turk platform to conventional data collection methods in the health and medical research literature. J Gen Intern Med 2018; 33 (04) 533-538
  • 47 Chandler J, Shapiro D. Conducting clinical research using crowd-sourced convenience samples. Annu Rev Clin Psychol 2016; 12: 53-81
  • 48 Berinsky AJ, Huber GA, Lenz GS. Evaluating online labor markets for experimental research: Amazon. com's Mechanical Turk. Polit Anal 2012; 20 (03) 351-368
  • 49 Litman L, Robinson J. Conducting Online Research on Amazon Mechanical Turk and Beyond. Vol 1. California, USA: SAGE; 2020
  • 50 Huang JL, Curran PG, Keeney J, Poposki EM, DeShon RP. Detecting and deterring insufficient effort responding to surveys. J Bus Psychol 2012; 27 (01) 99-114
  • 51 Mason W, Suri S. Conducting behavioral research on Amazon's Mechanical Turk. Behav Res Methods 2012; 44 (01) 1-23
  • 52 Thomas KA, Clifford S. Validity and mechanical Turk: an assessment of exclusion methods and interactive experiments. Comput Human Behav 2017; 77: 184-197
  • 53 Hathaliya JJ, Tanwar S. An exhaustive survey on security and privacy issues in Healthcare 4.0. Comput Commun 2020; 153: 311-335
  • 54 McGraw D, Dempsey JX, Harris L, Goldman J. Privacy as an enabler, not an impediment: building trust into health information exchange. Health Aff (Millwood) 2009; 28 (02) 416-427
  • 55 Williams C, Mostashari F, Mertz K, Hogin E, Atwal P. From the Office of the National Coordinator: the strategy for advancing the exchange of health information. Health Aff (Millwood) 2012; 31 (03) 527-536
  • 56 Zhang X, Liu S, Chen X, Wang L, Gao B, Zhu Q. Health information privacy concerns, antecedents, and information disclosure intention in online health communities. Inf Manage 2018; 55 (04) 482-493
  • 57 Esmaeilzadeh P, Mirzaei T, Dharanikota S. The impact of data entry structures on perceptions of individuals with chronic mental disorders and physical diseases towards health information sharing. Int J Med Inform 2020; 141: 104157
  • 58 D'Amore JD, Mandel JC, Kreda DA. et al. Are meaningful use stage 2 certified EHRs ready for interoperability? Findings from the SMART C-CDA Collaborative. J Am Med Inform Assoc 2014; 21 (06) 1060-1068
  • 59 Patel VN, Dhopeshwarkar RV, Edwards A, Barrón Y, Sparenborg J, Kaushal R. Consumer support for health information exchange and personal health records: a regional health information organization survey. J Med Syst 2012; 36 (03) 1043-1052
  • 60 Yaraghi N, Gopal RD, Ramesh R. Doctors' orders or patients' preferences? Examining the role of physicians in patients' privacy decisions on health information exchange platforms. J Assoc Inf Syst 2019; 20 (07) 928-952
  • 61 Yaraghi N, Sharman R, Gopal R, Singh R, Ramesh R. Drivers of information disclosure on health information exchange platforms: insights from an exploratory empirical study. J Am Med Inform Assoc 2015; 22 (06) 1183-1186
  • 62 Ancker JS, Silver M, Miller MC, Kaushal R. Consumer experience with and attitudes toward health information technology: a nationwide survey. J Am Med Inform Assoc 2013; 20 (01) 152-156
  • 63 Kissi J, Dai B, Dogbe CS, Banahene J, Ernest O. Predictive factors of physicians' satisfaction with telemedicine services acceptance. Health Informatics J 2020; 26 (03) 1866-1880