Enabling Technology to Advance Health-Protecting Individual Rights-Are We Walking the Talk?

  • Crystal Sharp
  • Femida Gwadry-Sridhar
Part of the Lecture Notes of the Institute for Computer Sciences, Social Informatics and Telecommunications Engineering book series (LNICST, volume 27)

Abstract

The evolving structure and business of health care services and delivery need the functionality and capability offered by electronic health record (EHR) systems. By electronically diffusing the traditional patient record, however, this new model blurs the long-established medical data home, raising concerns about data ownership, confidentiality, access and individual rights. In 2008 the Lawson Health Research Institute began the process of instituting a robust health informatics and collaborative research infrastructure, now known as I-THINK Research. As data are migrated to the platform and policies are developed, we are forced to confront the complexity of issues around protection of individual rights. The paper presents, in a broader context, the main issues surrounding the privacy debate and the need for education, accountability and new legislation to help define and protect individual rights as new e-health business models emerge.

Keywords

eHealth electronic health records consent Google Health Microsoft Vault personal health records privacy confidentiality 

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. 1.
    Mann, R., Gwadry-Sridhar, F., Bowman, S., Soer, J.: How to Develop a Common Platform to Enable Interdisciplinary Research. International Journal of Technology, Knowledge and Society 5, 21–38 (2009)CrossRefGoogle Scholar
  2. 2.
    Steinbrook, R.: Personally Controlled Online Health Data – The Next Big Thing in Medical Care? N. Engl. J. Med. 358, 1653–1656 (2008)CrossRefPubMedGoogle Scholar
  3. 3.
    Jha, A.K., DesRoches, C.M., Campbell, E.G., Donelan, K., Rao, S.R., Ferris, T.G., Shields, A., Rosenbaum, S., Blumenthal, D.: Use of electronic health records in U.S. hospitals. N. Engl. J. Med. 360, 1628–1638 (2009)CrossRefPubMedGoogle Scholar
  4. 4.
    Economist, Medine goes digital: A special report on healthcare and technology. Economist, 1–16 (2009)Google Scholar
  5. 5.
    McGraw, D., Dempsey, J.X., Harris, L., Goldman, J.: Privacy As An Enabler, Not An Impediment: Building Trust Into Health Information Exchange. Health Aff. 28, 416–427 (2009)CrossRefGoogle Scholar
  6. 6.
    Lang, R.D.: Blurring the lines: who owns the medical data home? J. Healthc. Inf. Manag. 22, 2–4 (2008)Google Scholar
  7. 7.
    Gunter, T.D., Terry, N.P.: The emergence of national electronic health record architectures in the United States and Australia: models, costs, and questions. J. Med. Internet. Res. 7, e3 (2005)CrossRefGoogle Scholar
  8. 8.
    Sharp, C.: Conference Report: ICT 2008 - I’s to the Future: Invention, Innovation, Impact. Online 33[March/April 2], pp. 22–25. Information Today, Inc. (2009)Google Scholar
  9. 9.
    Hall, M.A., Schulman, K.A.: Ownership of Medical Information. JAMA 301, 1282–1284 (2009)CrossRefPubMedGoogle Scholar
  10. 10.
    Falcao-Reis, F., Costa-Pereira, A., Correia, M.E.: Access and privacy rights using web security standards to increase patient empowerment. Stud. Health Technol. Inform. 137, 275–285 (2008)PubMedGoogle Scholar
  11. 11.
    Rosenbaum, S., Painter, M.: Assessing Legal Implications of Using Health Data to Improve Health Care Quality and Eliminate Health Care Disparities. The Robert Wood Johnson Foundation (2005)Google Scholar
  12. 12.
    Bluml, B.M., Crooks, G.M.: Designing solutions for securing patient privacy–meeting the demands of health care in the 21st century. J. Am. Pharm. Assoc. (Wash.) 39, 402–407 (1999)CrossRefGoogle Scholar
  13. 13.
    Conn, J.: Data encryption just one option under security law. Modern Healthcare (2009)Google Scholar
  14. 14.
    Kelman, C., Bass, A., Holman, C.: Research use of linked health data - a best practice protocol. Australian and New Zealand Journal of Public Health 26, 251–255 (2002)CrossRefPubMedGoogle Scholar
  15. 15.
    El Emam, K., Kosseim, P.: Privacy Interests in Prescription Data, Part 2. IEEE Security & Privacy, 75–78 (2009)Google Scholar
  16. 16.
    Kosseim, P., El Emam, K.: Privacy Interests in Prescription Data, Part 1. IEEE Security & Privacy 72 (2009)Google Scholar
  17. 17.
    Lowrance, W.W.: Learning from experience: privacy and the secondary use of data in health research. J. Biolaw. Bus. 6, 30–60 (2003)PubMedGoogle Scholar
  18. 18.
    Nixon, P., Wagealla, W., English, C., Terzis, S.: Security, privacy and trust issues in smart environments, Glasgow, Scotland, The Global and Pervasive Computing Group, Department of Computer and Information Sciences, University of Stathclyde (2009); 5-18-0090Google Scholar
  19. 19.
    Committee on Health Research and the Privacy of Health Information. Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research: Report Brief, Washington DC, Institute of Medicine (2009) Google Scholar
  20. 20.
    Lysyk, M., El Emam, K., Lucock, C., Power, M., Willison, D.: Privacy Guidelines Workshop Report, Ottawa, Canada (2006) 7-6-0090Google Scholar
  21. 21.
    Sharp, C.: Electronic Health Information: A boon and a curse! The Free Pint, Newsletter (2001); 7-6-0090Google Scholar
  22. 22.
    Greenhalgh, T., Stramer, K., Bratan, T., Byrne, E., Mohammad, Y., Russell, J.: Introduction of shared electronic records: multi-site case study using diffusion of innovation theory. BMJ 337, a1786 (2008)CrossRefGoogle Scholar
  23. 23.
    Zoutman, D.E., Ford, B.D., Bassili, A.R.: The confidentiality of patient and physician information in pharmacy prescription records. CMAJ 170, 815–816 (2004)CrossRefPubMedPubMedCentralGoogle Scholar
  24. 24.
    Economist. Medicine’s new central bankers. Economist (December 8, 2005)Google Scholar
  25. 25.
    Vickers, A.: Whose data set is it anyway? Sharing raw data from randomized trials. Trials 7, 15 (2006)CrossRefPubMedPubMedCentralGoogle Scholar
  26. 26.
    Hrynaszkiewicz, I., Altman, D.G.: Towards agreement on best practice for publishing raw clinical trial data. Trials 10, 17 (2009)CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Schaffer, A.: Your Medical Data Online: Google and Microsoft are offering rival programs that let people manage their own health information. Technology Review (July/August 2008)Google Scholar
  28. 28.
    Singer, E.: Personal Medical Monitoring: Keeping tabs on your vitals with Microsoft HealthVault. Technology Review (April 24, 2009)Google Scholar
  29. 29.
    Harris, L.: Google Health Heads to the Hospital: A new partnership at a Boston hospital could forecast future success. Technology Review (May 28, 2008)Google Scholar
  30. 30.
    Weitzman, E.R., Kaci, L., Mandl, K.D.: Acceptability of a personally controlled health record in a community-based setting: implications for policy and design. J. Med. Internet. Res. 11, e14 (2009)CrossRefGoogle Scholar
  31. 31.
    Groves, T.: Managing UK research data for future use. BMJ 338 (2009)Google Scholar
  32. 32.
    Halamka, J.: Blog Entry: A Privacy Framework for Personal Health Records, December 17. Blog (2008)Google Scholar
  33. 33.
    Chhanabhai, P., Holt, A.: Consumers are ready to accept the transition to online and electronic records if they can be assured of the security measures. Med. Gen. Med. 9, 8 (2007)Google Scholar
  34. 34.
    Robinson, N., Graux, H., Botterman, M., Valeri, L.: Review of the European Data Protection Directive. TR7 10-ICO, Cambridge, UK, Rand Europe (2009)Google Scholar
  35. 35.
    Halliday, D., Dizon, M., Kemmitt, H.: Baker & McKenzie’s regular article tracking developments in EU law relating to IP, IT and telecommunications. Computer Law and Security Report 23, 227–232 (2007)CrossRefGoogle Scholar
  36. 36.
    Connecting For Health. Common Framework for Networked Personal Health Information. Connecting for Health Website (2009); The Markle Foundation, 7-6-0090Google Scholar

Copyright information

© ICST Institute for Computer Science, Social Informatics and Telecommunications Engineering 2010

Authors and Affiliations

  • Crystal Sharp
    • 1
  • Femida Gwadry-Sridhar
    • 1
  1. 1.I-THINK ResearchLawson Health Research InstituteLondonCanada

Personalised recommendations