2020, Number 1
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Revista Cubana de Información en Ciencias de la Salud (ACIMED) 2020; 31 (1)
Perceptions of privacy in national electronic health record systems: the Australian case
Marques RIL
Language: Portugués
References: 32
Page: 1-23
PDF size: 420.54 Kb.
ABSTRACT
The objective of this paper was to explore privacy issues addressed by national electronic health record systems, with a case study of Australia's My Health Record system. Privacy issues were organized according to a conceptual framework of informational privacy that included corporate privacy practices and customer behavior. After searching bibliographic databases covering health, 18 articles were selected and analyzed that addressed the government's privacy practices, users' perceptions or attitudes, as well as their intentions or behavior related to informational privacy. Regarding privacy practices, the aspects of collecting and storing patient information were addressed, as well as the degree of transparency and control exercised by the patient over their data. With regard to patients' perception, there is a fear of improper access to data as well as identity theft and misuse of information by insurance companies or employers, but this fear does not differ from that when information is available on paper support. Finally, as the patient has access to health information, there is a need for these patients to be able to understand what has been recorded, i.e. there is a demand for better health literacy, but health professionals fear that this access by patients may lead to unnecessary confusion and worry, leading to an increased workload. It is concluded that the patient-controlled electronic health record at the national level can be an effective instrument for empowering citizens to control their health and a motivator to expand the conditions of their health literacy. However, these privacy issues call for an explicit and clear position by governments to ensure the confidentiality of the data and secondary uses that may be made of this information.
REFERENCES
Galvao MCB, Ricarte ILM. Prontuário do Paciente. Rio de Janeiro: Guanabara-Koogan; 2012. p. 322.
Tharmalingam S, Hagens S, Zelmer J. The value of connected health information: Perceptions of electronic health record users in Canada. BMC Med Inform Decis Mak [Internet]. 2016 [access: 2020/08/15];16(1):1-9. Available from: http://dx.doi.org/10.1186/s12911-016-0330-3
Essén A, Scandurra I, Gerrits R, Humphrey G, Johansen MA, Kiergegaard P, et al. Patient access to electronic health records: Differences across ten countries. Heal Policy Technol [Internet]. 2018 [access: 2020/08/15];7(1):44-56. Available from: http://dx.doi.org/10.1016/j.hlpt.2017.11.003
Fragidis LL, Chatzoglou PD. Implementation of a nationwide electronic health record (EHR): The international experience in 13 countries. Int J Health Care Qual Assur. 2018;31(2):116-30.
Solove DJ. Conceptualizing privacy. Calif Law Rev. 2002;90(4):1087-155.
Warren S, Brandeis LD. The Right to Privacy. Harv Law Rev. 1890;4(5):1-22.
Kokolakis S. Privacy attitudes and privacy behaviour: A review of current research on the privacy paradox phenomenon. Comput Secur [Internet]. 2017 [access: 2020/08/15];64:122-34. Available from: http://dx.doi.org/10.1016/j.cose.2015.07.002
Lee D. Facebook sued by top prosecutor over Cambridge Analytica. BBC News [Internet]. 2018 [acceso: 26/03/2020]; Available from: https://www.bbc.com/news/technology-46627133
O’Sullivan D. Facebook reveals bug exposed 6.8 million users’ photos. CNN International Edition [Internet]. 2018 [access: 2020/08/15]; Available from: https://edition.cnn.com/2018/12/14/tech/facebook-private-photos-exposed-bug/index.html
Beke FT, Eggers F, Verhoef PC. Consumer Informational Privacy: Current Knowledge and Research Directions. Found Trends® Mark [Internet]. 2018 [access: 2020/08/15];11(1):1-71. Available from: http://www.nowpublishers.com/article/Details/MKT-057
Gritzalis S, Lambrinoudakis C, Lekkas D, Deftereos S. Technical guidelines for enhancing privacy and data protection in modern electronic medical environments. IEEE Trans Inf Technol Biomed [Internet]. 2005 [access: 2020/08/15];(3):413-23. Available from: http://www.ncbi.nlm.nih.gov/pubmed/16167696
Yüksel B, Küpçü A, Özkasap Ö. Research issues for privacy and security of electronic health services. Futur Gener Comput Syst [Internet]. 2017 [access: 2020/08/15];68:1-13. Available from: http://dx.doi.org/10.1016/j.future.2016.08.011
Australian Government. Australian Digital Health Agency. My Health Record [Internet]. 2018 [access: 2020/08/15]. Available from: https://www.myhealthrecord.gov.au/
Dinev T, Hart P. An extended privacy calculus model for e-commerce transactions. Inf Syst Res. 2006;17(1):61-80.
Wohlin C. Guidelines for snowballing in systematic literature studies and a replication in software engineering. Proc 18th Int Conf Eval Assess Softw Eng - EASE ’14 [Internet]. 2014 [access: 2018/09/17]:1-10. Available from: http://dl.acm.org/citation.cfm?doid=2601248.2601268
Nøhr C, Parv L, Kink P, Cummings E, Almond H, Nørgaard JR, et al. Nationwide citizen access to their health data: Analysing and comparing experiences in Denmark, Estonia and Australia. BMC Health Serv Res. 2017;17(1):1-11.
Bidargaddi N, Kidd MR. Learning from development of a third-party patient-oriented application using Australia’s national personal health records system [Internet]. 2017 [access: 2018/09/17]. Available from: https://arxiv.org/abs/1709.03577
Garrety K, McLoughlin I, Dalley A, Wilson R, Yu P. National electronic health record systems as “wicked projects”: The Australian experience. Inf Polity. 2016;21(4):367-81.
Pearce C, Bainbridge M. A personally controlled electronic health record for Australia. J Am Med Informatics Assoc. 2014;21(4):707-13.
Hemsley B, McCarthy S, Adams N, Georgiou A, Hill S, Balandin S. Legal, ethical, and rights issues in the adoption and use of the “My Health Record” by people with communication disability in Australia. J Intellect Dev Disabil [Internet]. 2017 [access: 2018/09/17]:1–9. Available from: http://www.tandfonline.com/doi/abs/10.3109/13668250.2017.1294249
Mendelson D, Wolf G. “My [Electronic] Health Record” – Cui Bono (for Whose Benefit)? J Law Med [Internet]. 2016 [access: 2018/09/17];24(2):283-96. Available from: https://ssrn.com/abstract=2881787
Hanna L, Gill SD, Newstead L, Hawkins M, Osborne RH. Patient perspectives on a personally controlled electronic health record used in regional Australia: ‘I can be like my own doctor.’ Heal Inf Manag J. 2017;46(1):42-8.
Kerai P, Wood P, Martin M. A pilot study on the views of elderly regional Australians of personally controlled electronic health records. Int J Med Inform [Internet]. 2014 [access: 2018/09/17];83(3):201–9. Available from: http://dx.doi.org/10.1016/j.ijmedinf.2013.12.001
Garrety K, McLoughlin I, Wilson R, Zelle G, Martin M. National electronic health records and the digital disruption of moral orders. Soc Sci Med [Internet]. 2014;101:70–7. Available from: http://dx.doi.org/10.1016/j.socscimed.2013.11.029
Bidargaddi N, Van Kasteren Y, Musiat P, Kidd MR. Developing a third-party analytics application using Australia’s national personal health records system: Case study. J Med Internet Res. 2018;20(4):5.
Lehnbom EC, Brien JE, McLachlan AJ. Knowledge and attitudes regarding the personally controlled electronic health record: An Australian national survey. Intern Med J. 2014;44(4):406-9.
Carroll J, Butler-Henderson K. MyHealthRecord in Australian Primary Health Care: An Attitudinal Evaluation Study. J Med Syst. 2017;41(10):5.
Srur BL, Drew S. Challenges in designing a successful e-health system for Australia. In: 2012 International Symposium on Information Technologies in Medicine and Education [Internet]. Hokodate, Japan: Institute of Electrical and Electronics Engineers; 2012 [access: 2018/09/17]. p. 480–4. Available from: http://ieeexplore.ieee.org/document/6291347/
Andrews L, Gajanayake R, Sahama T. The Australian general public’s perceptions of having a personally controlled electronic health record (PCEHR). Int J Med Inform [Internet]. 2014 [access: 2018/09/17];83(12):889-900. Available from: http://dx.doi.org/10.1016/j.ijmedinf.2014.08.002
van Kasteren Y, Maeder A, Williams PA, Damarell R. Consumer perspectives on My Health Record: A review. Stud Health Technol Inform. 2017;239:146-52.
Parsons BF, Ryder N. High uptake of shared electronic health records among HIV-infected patients at an Australian sexual health clinic. Sex Health. 2016;13(4):393-4.
Walsh L, Hemsley B, Allan M, Adams N, Balandin S, Georgiou A, et al. The E-health Literacy Demands of Australia’s My Health Record: A Heuristic Evaluation of Usability. Perspect Heal Inf Manag [Internet]. 2017 [access: 2018/09/17];14(Fall):1-8. Available from: http://search.ebscohost.com/login.aspx?direct=true&db=cmedm&AN=29118683&site=ehost-live