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.
This is a preview of subscription content, log in via an institution.
Buying options
Tax calculation will be finalised at checkout
Purchases are for personal use only
Learn about institutional subscriptionsPreview
Unable to display preview. Download preview PDF.
References
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)
Steinbrook, R.: Personally Controlled Online Health Data – The Next Big Thing in Medical Care? N. Engl. J. Med. 358, 1653–1656 (2008)
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)
Economist, Medine goes digital: A special report on healthcare and technology. Economist, 1–16 (2009)
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)
Lang, R.D.: Blurring the lines: who owns the medical data home? J. Healthc. Inf. Manag. 22, 2–4 (2008)
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)
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)
Hall, M.A., Schulman, K.A.: Ownership of Medical Information. JAMA 301, 1282–1284 (2009)
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)
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)
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)
Conn, J.: Data encryption just one option under security law. Modern Healthcare (2009)
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)
El Emam, K., Kosseim, P.: Privacy Interests in Prescription Data, Part 2. IEEE Security & Privacy, 75–78 (2009)
Kosseim, P., El Emam, K.: Privacy Interests in Prescription Data, Part 1. IEEE Security & Privacy 72 (2009)
Lowrance, W.W.: Learning from experience: privacy and the secondary use of data in health research. J. Biolaw. Bus. 6, 30–60 (2003)
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); 5-18-0090
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)
Lysyk, M., El Emam, K., Lucock, C., Power, M., Willison, D.: Privacy Guidelines Workshop Report, Ottawa, Canada (2006) 7-6-0090
Sharp, C.: Electronic Health Information: A boon and a curse! The Free Pint, Newsletter (2001); 7-6-0090
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)
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)
Economist. Medicine’s new central bankers. Economist (December 8, 2005)
Vickers, A.: Whose data set is it anyway? Sharing raw data from randomized trials. Trials 7, 15 (2006)
Hrynaszkiewicz, I., Altman, D.G.: Towards agreement on best practice for publishing raw clinical trial data. Trials 10, 17 (2009)
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)
Singer, E.: Personal Medical Monitoring: Keeping tabs on your vitals with Microsoft HealthVault. Technology Review (April 24, 2009)
Harris, L.: Google Health Heads to the Hospital: A new partnership at a Boston hospital could forecast future success. Technology Review (May 28, 2008)
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)
Groves, T.: Managing UK research data for future use. BMJ 338 (2009)
Halamka, J.: Blog Entry: A Privacy Framework for Personal Health Records, December 17. Blog (2008)
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)
Robinson, N., Graux, H., Botterman, M., Valeri, L.: Review of the European Data Protection Directive. TR7 10-ICO, Cambridge, UK, Rand Europe (2009)
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)
Connecting For Health. Common Framework for Networked Personal Health Information. Connecting for Health Website (2009); The Markle Foundation, 7-6-0090
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2010 ICST Institute for Computer Science, Social Informatics and Telecommunications Engineering
About this paper
Cite this paper
Sharp, C., Gwadry-Sridhar, F. (2010). Enabling Technology to Advance Health-Protecting Individual Rights-Are We Walking the Talk?. In: Kostkova, P. (eds) Electronic Healthcare. eHealth 2009. Lecture Notes of the Institute for Computer Sciences, Social Informatics and Telecommunications Engineering, vol 27. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-11745-9_9
Download citation
DOI: https://doi.org/10.1007/978-3-642-11745-9_9
Publisher Name: Springer, Berlin, Heidelberg
Print ISBN: 978-3-642-11744-2
Online ISBN: 978-3-642-11745-9
eBook Packages: Computer ScienceComputer Science (R0)