Skip to main content

The Current State of Electronic Consent Systems in e-Health for Privacy Preservation

  • Conference paper
  • First Online:
Information Security (ISSA 2018)

Abstract

Consent management is a significant function in electronic health information systems as it allows patients to manage the privacy preferences regarding their health information. Placing patients in control of the privacy of their health information ensures that the risks for reputational and personal harm are reduced. Several approaches towards patient consent management solutions, ranging from software prototypes to conceptual models, have been adopted in response to the need for privacy preservation. The purpose of this paper is to review these approaches and to identify areas that still need to be addressed – particularly in terms of the automated enforcement of consent directives, interoperability, as well as standardised healthcare data exchange.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 39.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 54.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Coiera, E., Clarke, R.: e-Consent: the design and implementation of consumer consent mechanisms in an electronic environment. J. Am. Med. Inform. Assoc. 11(2), 129–140 (2004)

    Article  Google Scholar 

  2. Can, O.: A semantic model for personal consent management. In: Garoufallou, E., Greenberg, J. (eds.) MTSR 2013. CCIS, vol. 390, pp. 146–151. Springer, Cham (2013). https://doi.org/10.1007/978-3-319-03437-9_15

    Chapter  Google Scholar 

  3. Bursa, O., Sezer, E., Can, O., Unalir, M.O.: Using FOAF for interoperable and privacy protected healthcare information systems. In: Closs, S., Studer, R., Garoufallou, E., Sicilia, M.-A. (eds.) MTSR 2014. CCIS, vol. 478, pp. 154–161. Springer, Cham (2014). https://doi.org/10.1007/978-3-319-13674-5_15

    Chapter  Google Scholar 

  4. Heinze, O., Birkle, M., Köster, L., Bergh, B.: Architecture of a consent management suite and integration into IHE-based regional health information networks. BMC Med. Inform. Decis. Making 11(1), 58 (2011)

    Article  Google Scholar 

  5. Gaba, A., Havinga, Y., Meijer, H.J., Jan, E.: Privacy and security for analytics on healthcare data (2014)

    Google Scholar 

  6. Rindfleisch, T.C.: Privacy, information technology, and health care. Commun. ACM 40(8), 92–100 (1997)

    Article  Google Scholar 

  7. Eskeland, S., Oleshchuk, V.A.: EPR access authorization of medical teams based on patient consent. In: ECEH, pp. 11–22 (2007)

    Google Scholar 

  8. Russello, G., Dong, C., Dulay, N.: Consent-based workflows for healthcare management. In: IEEE Workshop on Policies for Distributed Systems and Networks, POLICY 2008, pp. 153–161. IEEE (2008)

    Google Scholar 

  9. Hu, L.L., Sparenborg, S., Tai, B.: Privacy protection for patients with substance use problems. Subst. Abuse Rehabil. 2, 227 (2011)

    Google Scholar 

  10. Yu, B., Wijesekera, D., Costa, P.C.G.: Informed consent in electronic medical record systems. In: Healthcare Ethics and Training: Concepts, Methodologies, Tools, and Applications, pp. 1029–1049. IGI Global (2017)

    Google Scholar 

  11. Mense, E., Blobel, B., et al.: Hl7 standards and components to support implementation of the European General Data Protection Regulation (GDPR). Eur. J. Biomed. Inform. 13(1), 27–33 (2017)

    Google Scholar 

  12. Abbas, R.M., Carroll, N., Richardson, I., Beecham, S.: The need for trustworthiness models in healthcare software solutions. In: HEALTHINF, pp. 451–456 (2017)

    Google Scholar 

  13. Moss, L., Shaw, M., Piper, I., Hawthorne, C., Kinsella, J.: Sharing of big data in healthcare: public opinion, trust, and privacy considerations for health informatics researchers. In: HEALTHINF, pp. 463–468 (2017)

    Google Scholar 

  14. Elkhodr, M., Shahrestani, S., Cheung, H.: Preserving the privacy of patient records in health monitoring systems. In: Theory and Practice of Cryptography Solutions for Secure Information Systems, pp. 499–529. IGI Global (2013)

    Google Scholar 

  15. Madathil, K.C., et al.: An investigation of the efficacy of electronic consenting interfaces of research permissions management system in a hospital setting. Int. J. Med. Inform. 82(9), 854–863 (2013)

    Article  Google Scholar 

  16. ACT Health: Informed consent. http://www.health.act.gov.au/publicinformation/consumers/informed-consent. Accessed 22 Mar 2018

  17. O’Connor, Y., Rowan, W., Lynch, L., Heavin, C.: Privacy by design: Informed consent and internet of things for smart health. Procedia Comput. Sci. 113, 653–658 (2017)

    Article  Google Scholar 

  18. St John, E., Scott, A., Irvine, T., Pakzad, F., Leff, D., Layer, G.: Completion of hand-written surgical consent forms is frequently suboptimal and could be improved by using electronically generated, procedure-specific forms. Surgeon 15(4), 190–195 (2017)

    Article  Google Scholar 

  19. Ghazvini, A., Shukur, Z.: Security challenges and success factors of electronic healthcare system. Procedia Technol. 11, 212–219 (2013)

    Article  Google Scholar 

  20. Fernández-Alemán, J.L., Señor, I.C., Lozoya, P.Á.O., Toval, A.: Security and privacy in electronic health records: a systematic literature review. J. Biomed. Inform. 46(3), 541–562 (2013)

    Article  Google Scholar 

  21. Buys, M.: Protecting personal information: implications of the protection of personal information (PoPI) act for healthcare professionals. SAMJ: South Afr. Med. J. 107(11), 954–956 (2017)

    Article  Google Scholar 

  22. Ramdhin, A.: Protection of personal information bill: what should you be asking? https://www.werksmans.com/legal-briefs-view/protection-ofpersonal-information-bill-what-should-you-be-asking/. Accessed 01 Mar 2018

  23. Gostin, L.O.: National health information privacy: regulations under the Health Insurance portability and accountability act. JAMA 285(23), 3015–3021 (2001)

    Article  Google Scholar 

  24. McGraw, D.: Privacy and health information technology: executive summary. J. Law Med. Ethics 37(2 suppl), 121–149 (2009)

    Article  Google Scholar 

  25. Wang, L.: The privacy rule: HIPAA standards for the privacy of individually identifiable health information. Empl. Benefits J. 27(3), 59–63 (2002)

    Google Scholar 

  26. Hodge Jr., J.G., Gostin, L.O., Jacobson, P.D.: Legal issues concerning electronic health information: privacy, quality, and liability. JAMA 282(15), 1466–1471 (1999)

    Article  Google Scholar 

  27. Antal, H., Bunnell, H.T., McCahan, S.M., Pennington, C., Wysocki, T., Blake, K.V.: A cognitive approach for design of a multimedia informed consent video and website in pediatric research. J. Biomed. Inform. 66, 248–258 (2017)

    Article  Google Scholar 

  28. Asghar, M.R., Russello, G.: Actors: a goal-driven approach for capturing and managing consent in e-health systems. In: IEEE International Symposium on Policies for Distributed Systems and Networks (POLICY), pp. 61–69. IEEE (2012)

    Google Scholar 

  29. Blake, K., et al.: Use of mobile devices and the internet for multimedia informed consent delivery and data entry in a pediatric asthma trial: Study design and rationale. Contemp. Clin. Trials 42, 105–118 (2015)

    Article  Google Scholar 

  30. Chávez, E., Finnie, G.: Empowering data sources to manage clinical data. In: 2010 IEEE 23rd International Symposium on Computer-Based Medical Systems (CBMS), pp. 203–208. IEEE (2010)

    Google Scholar 

  31. Ge, Y., Ahn, D.K., Unde, B., Gage, H.D., Carr, J.J.: Patient-controlled sharing of medical imaging data across unaffiliated healthcare organizations. J. Am. Med. Inform. Assoc. 20(1), 157–163 (2013)

    Article  Google Scholar 

  32. Bergmann, J., Bott, O.J., Pretschner, D.P., Haux, R.: An e-consent-based shared EHR system architecture for integrated healthcare networks. Int. J. Med. Inform. 76(2), 130–136 (2007)

    Article  Google Scholar 

  33. Khan, A., McKillop, I.: Privacy-centric access control for distributed heterogeneous medical information systems. In: 2013 IEEE International Conference on Healthcare Informatics (ICHI), pp. 297–306. IEEE (2013)

    Google Scholar 

  34. Ko, Y.Y., Liou, D.M.: The study of managing the personal consent in the electronic healthcare environment. World Acad. Sci. Eng. Technol. 65, 314 (2010)

    Google Scholar 

  35. Kondylakis, H., et al.: IEmS: a collaborative environment for patient empowerment. In: 2012 IEEE 12th International Conference on Bioinformatics and Bioengineering (BIBE), pp. 535–540. IEEE (2012)

    Google Scholar 

  36. Kondylakis, H., et al.: Donors support tool: Enabling informed secondary use of patients’ biomaterial and personal data. Int. J. Med. Inform. 97, 282–292 (2017)

    Article  Google Scholar 

  37. Sonne, S.C., et al.: Development and pilot testing of a video-assisted informed consent process. Contemp. Clin. Trials 36(1), 25–31 (2013)

    Article  Google Scholar 

  38. Nwomeh, B.C., Hayes, J., Caniano, D.A., Upperman, J.S., Kelleher, K.J.: A parental educational intervention to facilitate informed consent for emergency operations in children. J. Surg. Res. 152(2), 258–263 (2009)

    Article  Google Scholar 

  39. Li, Y., Xie, M., Bian, J.: USign—a security enhanced electronic consent model. In: 2014 36th Annual International Conference of the IEEE Engineering in Medicine and Biology Society (EMBC), pp. 4487–4490. IEEE (2014)

    Google Scholar 

  40. Lentz, J., Kennett, M., Perlmutter, J., Forrest, A.: Paving the way to a more effective informed consent process: recommendations from the clinical trials transformation initiative. Contemp. Clin. Trials 49, 65–69 (2016)

    Article  Google Scholar 

  41. Warriner, A., et al.: A pragmatic randomized trial comparing tablet computer informed consent to traditional paper-based methods for an osteoporosis study. Contemp. Clin. Trials Commun. 3, 32–38 (2016)

    Article  Google Scholar 

  42. Whiddett, R., Hunter, I., Engelbrecht, J., Handy, J.: Patients attitudes towards sharing their health information. Int. J. Med. Inform. 75(7), 530–541 (2006)

    Article  Google Scholar 

  43. Yu, B., Wijesekera, D., Costa, P.C.: An ontology for medical treatment consent. In: STIDS, pp. 72–79 (2014)

    Google Scholar 

  44. Pruski, C.: e-CRL: a rule-based language for expressing patient electronic consent. In: Second International Conference on eHealth, Telemedicine, and Social Medicine, 2010, ETELEMED 2010, pp. 141–146. IEEE (2010)

    Google Scholar 

  45. Yu, B., Wijesekera, D., Costa, P.: Consent-based workflow control in EMRs. Procedia Technol. 16, 1434–1445 (2014)

    Article  Google Scholar 

  46. Rowan, W., O’Connor, Y., Lynch, L., Heavin, C.: Exploring user behaviours when providing electronic consent on health social networks: a just tick agree approach. Procedia Comput. Sci. 121, 968–975 (2017)

    Article  Google Scholar 

  47. Cavoukian, A.: Privacy by Design. Take the Challenge. Information and Privacy Commissioner of Ontario, Toronto (2009)

    Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Lelethu Zazaza .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2019 Springer Nature Switzerland AG

About this paper

Check for updates. Verify currency and authenticity via CrossMark

Cite this paper

Zazaza, L., Venter, H.S., Sibiya, G. (2019). The Current State of Electronic Consent Systems in e-Health for Privacy Preservation. In: Venter, H., Loock, M., Coetzee, M., Eloff, M., Eloff, J. (eds) Information Security. ISSA 2018. Communications in Computer and Information Science, vol 973. Springer, Cham. https://doi.org/10.1007/978-3-030-11407-7_6

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-11407-7_6

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-11406-0

  • Online ISBN: 978-3-030-11407-7

  • eBook Packages: Computer ScienceComputer Science (R0)

Publish with us

Policies and ethics