Privacy and data confidentiality of older people in the face of health monitoring technologies

Authors

DOI:

https://doi.org/10.1344/rbd2024.60.43050

Keywords:

information technology, mobile health, elderly population, privacy, confidentiality

Abstract

This article discusses the advances and challenges of health monitoring technologies for elderly individuals and their implications on the privacy and confidentiality of collected data. It is an exploratory study grounded in the literature, with a narrative synthesis. The text contextualizes the demands arising from the aging population and the use of sensors and other electronic devices in monitoring daily activities of elderly people in both indoor and outdoor environments. It is important to emphasize that the benefits offered by these technologies should not compromise the privacy and confidentiality of the data. To ensure this, it is necessary to enhance regulatory mechanisms by establishing security standards and ethical principles for the protection of personal data, while respecting privacy and data confidentiality.

Author Biographies

Silvi Barberato-Filho, University of Sorocaba

 

 

Alan Martinez Kozyreff, Universidade de Sorocaba

 

 

References

Abreu, J., Oliveira, R., Garcia-Crespo, A. & Rodriguez-Goncalves, R. (2021). TV interaction as a non-invasive sensor for monitoring elderly well-being at home. Sensors (Basel), 21(20), 6897. https://doi.org/10.3390/s21206897.

Ahad, M. A. R., Ngo, T. T., Antar, A. D., Ahmed, M., Hossain, T., Muramatsu, D., Makihara, Y., Inoue, S. & Yag, Y. (2020). Wearable sensor-based gait analysis for age and gender estimation. Sensors (Basel), 20(8), 2424. https://doi.org/10.3390/s20082424.

Alemanha. (1983). Tribunal Constitucional Federal - 1 BvR 209/83 -, Rn. 1-215, 15 de dezembro de 1983. Disponível em: http://www.bverfg.de/e/rs19831215_1bvr020983.html.

Alkhatib, S., Waycott, J., Buchanan, G. & Bosua, R. (2018). Privacy and the Internet of Things (IoT) monitoring solutions for older adults: A review. Studies in health technology and informatics, 252, 8-14. https://doi.org/10.3233/978-1-61499-890-7-8.

Almeida, S. C. D. & Soares, T. A. (2022). Os impactos da Lei Geral de Proteção de Dados - LGPD no cenário digital. Perspectivas em Ciência da Informação, 27(3), 26-45. https://doi.org/10.1590/1981-5344/25905.

Artun, O. & Levin, D. (2015). Predictive marketing: Easy ways every marketer can use customer analytics and big data. John Wiley & Sons.

Baier, A. (1986). Trust and antitrust. Ethics, 96(2), 231–260. https://doi.org/10.1086/292745.

Batista, E., Moncusi, M. A., López-Aguilar, P., Martínez-Ballesté, A. & Solanas, A. (2021). Sensors for context-aware smart healthcare: A security perspective. Sensors (Basel), 17(21), 6886. https://doi.org/10.3390/s21206886.

Bioni, B. R. (2015). Xeque-mate, o tripé da proteção de dados pessoais no jogo de xadrez das iniciativas legislativas no Brasil. São Paulo: Grupo de Pesquisa em Políticas Públicas para o Acesso à Informação - GPoPAI/USP. Disponível em: http://gomaoficina.com/wp-content/uploads/2016/07/XEQUE_MATE_INTERATIVO.pdf.

Blažun, H., Vošner, J., Kokol, P., Saranto, K. & Rissanen, S. (2014). Elderly people's interaction with advanced technology. Studies in Health Technology and Informatics, 201, 1-10. https://doi.org/10.3233/wor-2012-0183-362.

Brasil. Agência Nacional de Vigilância Sanitária. (2020). Princípios e práticas de cibersegurança em dispositivos médicos. Guia nº 38/2020 – versão 1, de 14/09/2020. Disponível em: https://www.gov.br/anvisa/pt-br/assuntos/noticias-anvisa/2020/saiba-mais-sobre-ciberseguranca-em-dispositivos-medicos/guia-38.pdf. Acesso em 31 out. 2023.

Brasil. (2003). Lei nº 10.471, de 1º de outubro de 2003. Dispõe sobre o estatuto da pessoa idosa e dá outras providências. Diário Oficial da República Federativa do Brasil, Brasília. Disponível em: https://www.planalto.gov.br/ccivil_03/leis/2003/l10.741.htm.

Brasil. (2018). Lei nº 13.709, de 14 de agosto de 2018. Lei Geral de Proteção de Dados Pessoais (LGPD). Diário Oficial da República Federativa do Brasil, Brasília. Disponível em: https://www.planalto.gov.br/ccivil_03/_ato2015-2018/2018/lei/l13709.htm.

Camarano, A. (2022). Envelhecimento da população brasileira: uma contribuição demográfica. Rio de Janeiro: Ipea. Disponível em: http://repositorio.ipea.gov.br/bitstream/11058/2091/1/TD_858.pdf.

Carnemolla, P. (2018). Ageing in place and the internet of things – how smart home technologies, the built environment and caregiving intersect. Visualization in Engineering, 6, 7. https://doi.org/10.1186/s40327-018-0066-5.

Christensen, K., Doblhammer, G., Rau, R. & Vaupel, J. W. (2009). Ageing populations: The challenges ahead. Lancet, 3(374), 1196-1208. https://doi.org/10.1016/S0140-6736(09)61460-4.

Cohen, R., Fernie, G. & Roshan Fekr, A. (2021). Fluid intake monitoring systems for the elderly: A review of the literature. Nutrients, 13(6), 2092. https://doi.org/10.3390/nu13062092.

Consel, C. & Jeffrey, A. K. (2019). Aging with the Internet of Things. Aging with the Internet of Things. The Bridge, Technologies for aging, 49(1), 6-12. Disponível em: https://hal.inria.fr/hal-02124854/.

Crotty, B. H., Walker, J., Dierks, M., Lipsitz, L., O´Brien, J., Fisher, S., Slack, W. V. & Safran, C. (2015). Information sharing preferences of older patients and their families. JAMA internal medicine, 175(9), 1492-1497. https://doi.org/10.1001/jamainternmed.2015.2903.

Day-Duro, E., Lubitsh, G. & Smith, G. (2020). Understanding and investing in healthcare innovation and collaboration. Journal of health organization and management, 34(4), 469-487. https://doi.org/10.1108/JHOM-07-2019-0206.

Deen, M. J. (2015). Information and communications technologies for elderly ubiquitous healthcare in a smart home. Personal and ubiquitous computing, 19, 573-599. https://doi.org/10.1007/s00779-015-0856-x.

Doi, T., Ishii, H., Tsutsumimoto, K., Nakakubo, S., Kurita, S. & Shimada, H. (2020). Car accidents associated with physical frailty and cognitive impairment. Gerontology, 66(6), 624-630. https://doi.org/10.1159/000508823.

Escorsim, S. M. (2021). O envelhecimento no Brasil: aspectos sociais, políticos e demográficos em análise. Serviço Social & Sociedade, 142, 427-446. https://doi.org/10.1590/0101-6628.258.

European Parliament and Council Regulation (EU) 2016/679 of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General data Protection Regulation) (2016). O. J. E. U. 2016, L119:1–88. Disponível em: https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex%3A32016R0679.

Fausset, C. B., Kelly, A. J., Rogers, W. A. & Fisk, A. D. (2011). Challenges to aging in place: Understanding home maintenance difficulties. Journal of housing for the elderly, 25, 125-141. https://doi.org/10.1080/02763893.2011.571105.

Ferraz Júnior, T. S. (1993). Sigilo de dados: o direito à privacidade e os limites à função fiscalizadora do Estado. Revista da Faculdade de Direito, 88, 439-459. Disponível em: https://www.revistas.usp.br/rfdusp/article/view/67231.

Fórum Econômico Global. (2019). Health and healthcare in the fourth industrial revolution global future council on the future of health and healthcare 2016-2018. Disponível em: https://www3.weforum.org/docs/WEF__Shaping_the_Future_of_Health_Council_Report.pdf.

Fuentes, D., Correia, L., Costa, N., Reis, A., Ribeiro, J., Rabadão, C., Barroso, J. & Pereira, A. (2021). IndoorCare: Low-cost elderly activity monitoring system through image processing. Sensors (Basel), 21(18), 6051. https://doi.org/10.3390/s21186051.

Geifman, N., Cohen, R. & Rubin, E. (2013). Redefining meaningful age groups in the context of disease. Age (Dordr), 35, 2357-2366. https://doi.org/10.1007/s11357-013-9510-6.

Gettel, C. J., Chen, K. & Goldberg, E. M. (2021). Dementia care, fall detection, and ambient-assisted living technologies help older adults age in place: A scoping review. Journal of applied gerontology: the official journal of the Southern Gerontological Society, 40(12), 1893-1902. https://doi.org/10.1177/07334648211005868.

Hareven, T. K. (1995). Images of aging and the social construction of the life course. En M. Featherstone y A. Wernick, (Org.). Images of aging: cultural representations of later life, (pp. 119-135), Londres: Routledge. Disponível em: https://www.taylorfrancis.com/chapters/edit/10.4324/9780203397442-18/changing-images-aging-social-construction-life-course-tamara-hareven?context=ubx&refId=bbe7e15d-f146-4bec-9d97-4deb725d668b.

Hnat, T. W., Griffiths, E., Dawson, R. & Whitehouse, K. (2012). Doorjamb: unobtrusive room-level tracking of people in homes using doorway sensors. Unobtrusive room-level tracking of people in homes

using. Proceedings of the 10th ACM Conference on Embedded Network Sensor Systems - SenSys’12, 209-322. https://doi.org/10.1145/2426656.2426687.

Huber, L., Boutain, M., Camp, J. & Shankar, K. (2011). Privacy, technology, and aging: a proposed framework. Ageing International, 36, 232-252. https://doi.org/10.1007/s12126-010-9083-y.

Hurtado, D. E., Abusleme, A. & Chávez, J. A. P. (2019). Non-invasive continuous respiratory monitoring using temperature-based sensors. Journal of clinical monitoring and computing, 34(2), 223-231. https://doi.org/10.1007/s10877-019-00329-5.

Hutton, L., Price, B. A., Kelly, R., Mccormick, C., Bandara, A. K., Hatzakis, T., Meadows, M. & Nuseibeh, B. (2018). Assessing the privacy of mHealth apps for self-tracking: heuristic evaluation approach. JMIR Mhealth Uhealth, 6(10), e185. https://doi.org/10.2196/mhealth.9217.

Ianculescu, M., Paraschiv, E. A. & Alexandru, A. (2022). Addressing mild cognitive impairment and boosting wellness for the elderly through personalized remote monitoring. Healthcare (Basel), 10(7), 1214. https://doi.org/10.3390/healthcare10071214.

IBGE, Instituto Brasileiro de Geografia e Estatística. (2018). Projeção da população 2018: número de habitantes do país deve parar de crescer em 2047. Disponível em: https://agenciadenoticias.ibge.gov.br/agencia-sala-de-imprensa/2013-agencia-de-noticias/releases/21837-projecao-da-populacao-2018-numero-de-habitantes-do-pais-deve-parar-de-crescer-em-2047.

Kang, H. G., Mahoney, D. F., Hoenig, H., Hirth, V. A., Bonato, P., Hajjar, I., Lipsitz, L. A. & Center for Integration of Medicine and Innovative Technology Working Group on Advanced Approaches to Physiologic Monitoring for the Aged (2010). In situ monitoring of health in older adults: Technologies and issues. Journal of the American Geriatrics Society, 58(8), 1579-1586. https://doi.org/10.1111/j.1532-5415.2010.02959.x.

Kim, D., Bian, H., Chang, C. K., Dong, L. & Margrett, J. (2022). In-home monitoring technology for aging in place: scoping review. Interactive journal of medical research, 11(2), e39005. https://doi.org/10.2196/39005.

Kim, J., Campbell, A. S., de Ávila, B. E. & Wang, J. (2019). Wearable biosensors for healthcare monitoring. Nature biotechnology, 37(4), 389-406. https://doi.org/10.1038/s41587-019-0045-y.

Kramarow, E., Warner, M. & Chen, L. H. (2014). Food-related choking deaths among the elderly. Injury prevention: journal of the International Society for Child and Adolescent Injury Prevention, 20(3), 200-203. https://doi.org/10.1136/injuryprev-2013-040795.

Kröger, J. (2019). Unexpected inferences from sensor data: a hidden privacy threat in the Internet of Things. 1st IFIP International Internet of Things Conference (IFIPIoT), 548, 147-159. https://doi.org/10.1007/978-3-030-15651-0_13.

Lee, L. M. (2017). Ethics and subsequent use of electronic health record data. Journal of Biomedical Informatics, 71, 143-146. https://doi.org/10.1016/j.jbi.2017.05.022.

Lipsky, M. S. & King, M. (2015). Biological theories of aging. Disease-a-Month, 61(11), 460-466. https://doi.org/10.1016/j.disamonth.2015.09.005.

Liu, L., Wu, F., Tong, H., Hao, C. & Xie, T. (2021). The digital divide and active aging in China. International journal of environmental research and public health, 18(23), 12675. https://doi.org/10.3390/ijerph182312675.

Lorezen-Huber, L., Boutain, M., Camp, L. J., Shankar, K. & Connelly, K. H. (2011). Privacy, technology, and aging: a proposed framework. Ageing International, 36, 232-252. https://doi.org/10.1007/s12126-010-9083-y.

Majumder, S., Mondal, T. & Deen, M. J. (2017). Wearable sensors for remote health monitoring. Sensors (Basel), 17(1), 130. https://doi.org/ 10.3390/s17010130.

Ma, Q., Chan, A. H. S. & Teh, P. (2022). Bridging the digital divide for older adults via observational training: effects of model identity from a generational perspective. Sustainability, 12, 4555. https://doi.org/10.3390/su12114555.

Martin, J. F. (2014). Privacy and confidentiality. En H. ten Have y B. Gordijn (eds). Handbook of Global Bioethics. Dordrecht: Springer. https://doi.org/10.1007/978-94-007-2512-6_72.

Melo, H., Correia, W. & Campos, F. (2020). Idosos e o uso de tecnologias assistivas em casa: uma revisão sistemática de literatura. Ergodesign & HCI, 8(2), 27-43. http://dx.doi.org/10.22570/ergodesignhci.v8i2.1443.

Mendonça, J. M. B., Abigalil, A. P. C., Pereira, P. A. P., Yuste, A. J. & Ribeiro, H. S. (2021). O sentido do envelhecer para o idoso dependente. Ciência & Saúde Coletiva, 26(1), 57-65. https://doi.org/10.1590/1413-81232020261.32382020.

Menke, F. (2015). A proteção de dados e o novo direito fundamental à garantia da confidencialidade e da integridade dos sistemas técnico-informacionais no direito alemão. En G. F. Mendes, I. W. Sarlet, A. Z. P. Coelho (org.). Direito, inovação e tecnologia. (pp. 205-230). São Paulo: Saraiva.

Nilson, F., Lundgren, L. & Bonander, C. (2020). Living arrangements and fire-related mortality amongst older people in Europe. International journal of injury control and safety promotion, 27(3), 378-384. https://doi.org/10.1080/17457300.2020.1780454.

Norman, C. D. & Skinner, H. A. (2006). eHealth Literacy: Essential skills for consumer health in a networked world. Journal of medical Internet research, 8(2), e9. https://doi.org/10.2196/jmir.8.2.e9.

OCDE, Organização para a Cooperação e Desenvolvimento Econômico. (2017). The next production revolution: implications for governments and business. Paris: OECD Publishing. Disponível em: https://books.google.com.br/books?id=3RDUDgAAQBAJ&printsec=frontcover&hl=pt-BR&source=gbs_ge_summary_r&cad=0#v=onepage&q&f=false. Acesso em 20 nov. 2022.

OMS, Organização Mundial da Saúde. (2016). Acción multisectorial para un envejecimiento saludable basado en el ciclo de vida: proyecto de estrategia y plan de acción mundiales sobre el envejecimiento y la salud. 69.ª Assembleia Mundial da Saúde. Disponível em: https://apps.who.int/gb/ebwha/pdf_files/WHA69/A69_17-sp.pdf?ua=1. Acesso em 02 out. 2022.

OMS, Organização Mundial da Saúde. (2021). Falls. Disponível em: https://www.who.int/es/news-room/fact-sheets/detail/falls. Acesso em 25 out. 2022.

OMS, Organização Mundial da Saúde (2022). Envelhecimento e saúde. Disponível em: https://www.who.int/en/news-room/fact-sheets/detail/ageing-and-health. Acesso em 9 out. 2022.

ONU, Organização das Nações Unidas. (1948). Declaração Universal dos Direitos Humano. Disponível em: https://www.unicef.org/brazil/declaracao-universal-dos-direitos-humanos. Acesso em 22 dez. 2022.

ONU, Organização das Nações Unidas. Department of Economic and Social Affairs, Population Division. (2019). World Population Prospects 2019: Highlights (ST/ESA/SER.A/423). Disponível em: https://population.un.org/wpp/Publications/Files/WPP2019_Highlights.pdf. Acesso em 26 dez. 2022.

OPAS, Organização Pan-Americana da Saúde. (2023). O papel das tecnologias digitais no envelhecimento e na saúde. https://doi.org/10.37774/9789275726907.

OPAS, Organização Pan-Americana da Saúde. (2022). Relatório mundial sobre o idadismo. https://doi.org/10.37774/9789275724453.

OPAS, Organização Pan-Americana da Saúde. (2020). Década do envelhecimento saudável 2020-2030 (OPAS-W/BRA/FPL/20-120). Disponível em https://iris.paho.org/handle/10665.2/52902. Acesso em 26 dez. 2022.

Peck, M. D. (2011). Epidemiology of burns throughout the world. Part I: Distribution and risk factors. Burns, 37, 1087-1100. https://doi.org/10.1016/j.burns.2011.06.005.

Piau, A., Steinmeyer, Z., Mattek, N., Lindauer, A., Sharma, N., Bouranis, N., Wild, K. & Kaye, J. (2023). Caregiving in older adults: experiences and attitudes toward smart technologies. Journal of clinical medicine, 12(5), 1789. https://doi.org/10.3390/jcm12051789.

Predel, C., Timmermann, C., Ursin, F., Orzechowski, M., Ropinski, T., & Steger, F. (2022). Conflicting aims and values in the application of smart sensors in geriatric rehabilitation: ethical analysis. JMIR mHealth and uHealth, 10(6), e32910. https://doi.org/10.2196/32910.

Rodriguez-León, C., Villalonga, C., Munoz-Torres, M., Ruiz, J. R. & Banos, O. (2021). Mobile and wearable technology for the monitoring of diabetes-related parameters: systematic review. JMIR Mhealth Uhealth, 9(6), e25138. https://doi.org/10.2196/25138.

Rogers, S. (2020). How Virtual reality is benefiting seniors. Disponível em: https://www.forbes.com/sites/solrogers/2020/02/26/how-virtual-reality-is-benefiting-seniors/?sh=3e89dc1c1485.

Sabharwal, S., Wilson, H., Reilly, P. & Gupte, C. M. (2015). Heterogeneity of the definition of elderly age in current orthopaedic research. SpringerPlus, 4, 516. https://doi.org/10.1186/s40064-015-1307-x.

Silva, L. R. F. (2008). Da velhice à terceira idade: o percurso histórico das identidades atreladas ao processo de envelhecimento. História, Ciências, Saúde-Manguinhos, 15(1), 155-168. https://doi.org/10.1590/S0104-59702008000100009.

Soares, F. R. (2021). Consentimento no direito da saúde nos contextos de atendimento médico e de LGPD: diferenças, semelhanças e consequências no âmbito dos defeitos e da responsabilidade. Revista IBERC, 4(2), 18-46. https://doi.org/10.37963/iberc.v4i2.170.

Swift, C. G. & Iliffe, S. (2014). Assessment and prevention of falls in older people – concise guidance. Clinical Medicine Jounal, 14(6), 658-662. https://doi.org/10.7861/clinmedicine.14-6-658.

Swire-Thompson, B. & Lazer, D. (2020). Public health and online misinformation: Challenges and recommendations. Annual review of public health, 41, 433-451. https://doi.org/10.1146/annurev-publhealth-040119-0941272.

Tangari, G., Ikram, M., Ijaz, K., Kaafar, M.A. & Berkovsky, S. (2021). Mobile health and privacy: cross sectional study. BMJ, 373, 1248. https://doi.org/10.1136/bmj.n1248.

Taylor, J. O, Hartzler, A. L., Osterhage, K. P., Demiris, G. & Turner, A. M. (2018). Monitoring for change: The role of family and friends in helping older adults manage personal health information. Journal of the American Medical Informatics Association: JAMIA, 25, 989-999. https://doi.org/10.1093/jamia/ocy037.

Vaishya, R. & Vaish, A. (2020). Falls in older adults are serious. Indian journal of orthopaedics, 54(1), 69-74. https://doi.org/10.1007/s43465-019-00037-x.

Vichitvanichphong, S., Talaei-Khoei, A. & Kerr, D. (2017). Elderly’s perception about the value of assistive technologies for their daily living: impacting factors and theoretical support. Proceedings of the 50th Hawaii International Conference on System Sciences, 3678-3685. Disponível em: https://aisel.aisnet.org/cgi/viewcontent.cgi?article=1455&context=hicss-50.

Wang, D. X. M., Yao, J., Zirek, Y., Reijnierse, E. M. & Maier, A. B. (2020). Muscle mass, strength, and physical performance predicting activities of daily living: A meta-analysis. Journal of cachexia, sarcopenia and muscle, 11(1), 3-25. https://doi.org/10.1007/s43465-019-00037-x.

Wang, J., Spicher, N., Warnecke, J. M., Haghi, M., Schwartze, J. & Deserno, T. M. (2021). Unobtrusive health monitoring in private spaces: the smart home. Sensors (Basel), 21, 864. https://doi.org/10.3390/s21030864.

Wick, G., Jansen-Dürr, P., Berger, P., Blasko, I. & Grubeck-Loebenstein, B. (2000). Diseases of aging. Vaccine, 18, 1567-1583. https://doi.org/10.1016/S0264-410X(99)00489-2.

Xie, Z., Kojima, A. & Kubota, H. (2022). A study on the effect of sports on elderly traffic injury prevention. Journal of safety research, 81, 55-66. https://doi.org/10.1016/j.jsr.2022.01.006.

Zibrik, L., Khan, S., Bangar, N., Stacy, E., Novak Lauscher, H. & Ho, K. (2015). Patient and community centered eHealth: exploring eHealth barriers and facilitators for chronic disease self-management within British Columbia’s immigrant Chinese and Punjabi seniors. Health Policy and Technology, 4(4), 348-356. https://doi.org/10.1016/j.hlpt.2015.08.002.

Published

2024-02-13

How to Cite

Barberato-Filho, S., & Martinez Kozyreff, A. . (2024). Privacy and data confidentiality of older people in the face of health monitoring technologies. Revista De Bioética Y Derecho, (60), 53–74. https://doi.org/10.1344/rbd2024.60.43050

Issue

Section

General section