Sistemas nacionais de prontuários eletrônicos frente à privacidade de dados

Ricarte, Ivan L. M. Sistemas nacionais de prontuários eletrônicos frente à privacidade de dados., 2019 [Preprint]

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English abstract

This paper analyzes privacy issues contemplated in national electronic health record systems, with the My Health Record system from Australia as a case study. Privacy issues are organized in accordance with a conceptual framework of informational privacy that addresses corporate privacy practices and customer behavior. After searching the bibliographic databases that cover the health area, 18 articles were selected and analyzed that addressed the privacy practices offered by the government, the perceptions or attitudes of users, as well as their intentions or behavior related to informational privacy. Regarding privacy practices, the aspects of collection and storage of information about patients, as well as the degree of transparency and control exercised by the patient about their data, were addressed. Concerning patient perception, there is a fear of inappropriate access to data as well as identity theft and misuse of information by insurance companies or employers, but not different from that of on paper. Finally, as the patient has access to information about their health, there is a need for these patients to be able to understand what has been registered, that is, there is a demand for better health literacy, but health professionals fear that this access by patients can lead to unnecessary confusion and worry, leading to an increase in workload. It is concluded that the patient-controlled electronic health record at the national level can be an effective tool to empower the citizen in controlling his health and a motivator to broaden the conditions of his health literacy. However, privacy issues involved demand that there be an explicit and clear position on the part of the governments on the guarantee of the confidentiality of the data and secondary uses that may be made of this information.

Portuguese abstract

Este trabalho analisa questões de privacidade contempladas em sistemas nacionais de prontuários eletrônicos, tendo com estudo de caso o sistema My Health Record, da Austrália. As questões de privacidade são organizadas conforme um arcabouço conceitual de privacidade informacional que contempla práticas de privacidade de empresas e comportamento de clientes. Após busca em bases de dados bibliográficos que cobrem a área da saúde, foram selecionados e analisados 18 artigos que abordavam as práticas de privacidade oferecidas pelo governo, as percepções ou atitudes de usuários, bem como suas intenções ou comportamento relacionados à privacidade informacional. Em relação às práticas de privacidade, foram abordados os aspectos de coleta e armazenamento da informação sobre os pacientes, bem como o grau de transparência e controle exercido pelo paciente sobre seus dados. No que se refere à percepção por parte dos pacientes, existe o receio de acesso inapropriado aos dados, bem como de roubo de identidade e de uso inadequado de informação por empresas de seguro ou empregadores, mas esse receio não difere daquele existente quando a informação está em suporte papel. Por fim, à medida que o paciente tem acesso à informação sobre sua saúde, há uma necessidade de que esses pacientes estejam capacitados a entender o que foi registrado, ou seja, há uma demanda por melhor literacia em saúde, mas profissionais de saúde receiam que esse acesso pelos pacientes possa levar a confusões e preocupações desnecessárias, levando consequentemente a um aumento de carga de trabalho. Conclui-se que o prontuário eletrônico controlado pelo paciente, em nível nacional, pode ser um instrumento efetivo de empoderamento do cidadão no controle de sua saúde e um motivador para ampliar as condições de sua literacia em saúde. No entanto, as questões de privacidade envolvidas demandam que haja um posicionamento explícito e claro, por parte dos governos, sobre a garantia da confidencialidade dos dados e usos secundários que poderão ser feitos dessa informação.

Item type: Preprint
Keywords: Electronic health record; Privacy; National health systems
Subjects: B. Information use and sociology of information > BC. Information in society.
L. Information technology and library technology > LH. Computer and network security.
Depositing user: Prof. Ivan L M Ricarte
Date deposited: 11 Jun 2019 17:35
Last modified: 11 Jun 2019 17:35
URI: http://hdl.handle.net/10760/33929

References

Andrews, L., Gajanayake, R., & Sahama, T. (2014). The Australian general public’s perceptions of having a personally controlled electronic health record (PCEHR). International Journal of Medical Informatics, 83(12), 889–900. https://doi.org/10.1016/j.ijmedinf.2014.08.002

Australian Government. Australian Digital Health Agency. (2018). My Health Record. Retrieved September 12, 2018, from https://www.myhealthrecord.gov.au/

Beke, F. T., Eggers, F., & Verhoef, P. C. (2018). Consumer Informational Privacy: Current Knowledge and Research Directions. Foundations and Trends® in Marketing, 11(1), 1–71. https://doi.org/10.1561/1700000057

Bidargaddi, N., Van Kasteren, Y., Musiat, P., & Kidd, M. R. (2018). Developing a third-party analytics application using Australia’s national personal health records system: Case study. Journal of Medical Internet Research, 20(4). https://doi.org/10.2196/medinform.7710

Carroll, J., & Butler-Henderson, K. (2017). MyHealthRecord in Australian Primary Health Care: An Attitudinal Evaluation Study. Journal of Medical Systems, 41(10). https://doi.org/10.1007/s10916-017-0807-3

Dinev, T., & Hart, P. (2006). An extended privacy calculus model for e-commerce transactions. Information Systems Research, 17(1), 61–80. https://doi.org/10.1287/isre.1060.0080

Essén, A., Scandurra, I., Gerrits, R., Humphrey, G., Johansen, M. A., Kiergegaard, P., … Ancker, J. S. (2018). Patient access to electronic health records: Differences across ten countries. Health Policy and Technology, 7(1), 44–56. https://doi.org/10.1016/j.hlpt.2017.11.003

Fragidis, L. L., & Chatzoglou, P. D. (2018). Implementation of a nationwide electronic health record (EHR): The international experience in 13 countries. International Journal of Health Care Quality Assurance, 31(2), 116–130. https://doi.org/10.1108/IJHCQA-09-2016-0136

Galvao, M. C. B., & Ricarte, I. L. M. (2012). Prontuário do Paciente. Rio de Janeiro: Guanabara-Koogan.

Garrety, K., McLoughlin, I., Wilson, R., Zelle, G., & Martin, M. (2014). National electronic health records and the digital disruption of moral orders. Social Science and Medicine, 101, 70–77. https://doi.org/10.1016/j.socscimed.2013.11.029

Hanna, L., Gill, S. D., Newstead, L., Hawkins, M., & Osborne, R. H. (2017). Patient perspectives on a personally controlled electronic health record used in regional Australia: ‘I can be like my own doctor.’ Health Information Management Journal, 46(1), 42–48. https://doi.org/10.1177/1833358316661063

Hemsley, B., McCarthy, S., Adams, N., Georgiou, A., Hill, S., & Balandin, S. (2017). Legal, ethical, and rights issues in the adoption and use of the “My Health Record” by people with communication disability in Australia. Journal of Intellectual & Developmental Disability, 1–9. https://doi.org/10.3109/13668250.2017.1294249

Kerai, P., Wood, P., & Martin, M. (2014). A pilot study on the views of elderly regional Australians of personally controlled electronic health records. International Journal of Medical Informatics, 83(3), 201–209. https://doi.org/10.1016/j.ijmedinf.2013.12.001

Kokolakis, S. (2017). Privacy attitudes and privacy behaviour: A review of current research on the privacy paradox phenomenon. Computers and Security, 64, 122–134. https://doi.org/10.1016/j.cose.2015.07.002

Lee, D. (2018). Facebook sued by top prosecutor over Cambridge Analytica. BBC News. Retrieved from https://www.bbc.com/news/technology-46627133

Lehnbom, E. C., Brien, J. E., & McLachlan, A. J. (2014). Knowledge and attitudes regarding the personally controlled electronic health record: An Australian national survey. Internal Medicine Journal, 44(4), 406–409. https://doi.org/10.1111/imj.12384

Mendelson, D., & Wolf, G. (2016). “My [Electronic] Health Record” – Cui Bono (for Whose Benefit)? Journal of Law and Medicine, 24(2), 283–296. Retrieved from https://ssrn.com/abstract=2881787

Nøhr, C., Parv, L., Kink, P., Cummings, E., Almond, H., Nørgaard, J. R., & Turner, P. (2017). Nationwide citizen access to their health data: Analysing and comparing experiences in Denmark, Estonia and Australia. BMC Health Services Research, 17(1), 1–11. https://doi.org/10.1186/s12913-017-2482-y

O’Sullivan, D. (2018). Facebook reveals bug exposed 6.8 million users’ photos. CNN International Edition. Retrieved from https://edition.cnn.com/2018/12/14/tech/facebook-private-photos-exposed-bug/index.html

Parsons, B. F., & Ryder, N. (2016). High uptake of shared electronic health records among HIV-infected patients at an Australian sexual health clinic. Sexual Health, 13(4), 393–394. https://doi.org/10.1071/SH16035

Pearce, C., & Bainbridge, M. (2014). A personally controlled electronic health record for Australia. Journal of the American Medical Informatics Association, 21(4), 707–713. https://doi.org/10.1136/amiajnl-2013-002068

Srur, B. L., & Drew, S. (2012). Challenges in designing a successful e-health system for Australia. In 2012 International Symposium on Information Technologies in Medicine and Education (pp. 480–484). Hokodate, Japan: Institute of Electrical and Electronics Engineers. https://doi.org/10.1109/ITiME.2012.6291347

Tharmalingam, S., Hagens, S., & Zelmer, J. (2016). The value of connected health information: Perceptions of electronic health record users in Canada. BMC Medical Informatics and Decision Making, 16(1), 1–9. https://doi.org/10.1186/s12911-016-0330-3

van Kasteren, Y., Maeder, A., Williams, P. A., & Damarell, R. (2017). Consumer perspectives on My Health Record: A review. Studies in Health Technology and Informatics, 239(March 2016), 146–152. https://doi.org/10.3233/978-1-61499-783-2-146

Walsh, L., Hemsley, B., Allan, M., Adams, N., Balandin, S., Georgiou, A., … Hill, S. (2017). The E-health Literacy Demands of Australia’s My Health Record: A Heuristic Evaluation of Usability. Perspectives In Health Information Management, 14(Fall), 1–28. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=cmedm&AN=29118683&site=ehost-live

Warren, S., & Brandeis, L. D. (1890). The Right to Privacy. Harvard Law Review, 4(5), 1–22. https://doi.org/10.2307/1321160


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