Abstract
The use of administrative or integrated data systems to provide actionable intelligence (AI) generates a number of ethical concerns from the confidentiality of the individuals whose information is contained in the data to the appropriate use and interpretation of the findings from analyzed data by researchers and executive leadership. Data are everywhere, and with current technologies, those data are more accessible and analyzable. So how can we promote the appropriate and ethical use of integrated data to inform effective social policy? That is the focus of this chapter.
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References
Arwood, T. (2010). Educational research and FERPA. Retrieved from http://www.clemson.edu/administration/ogc/documents/FERPA.pdf.
Black, C., McGrail, K., Fooks, C., & Maslove, L. (2005). Data, data everywhere: Improving access to population health and health services data in Canada. Vancouver: Centre for Health Services and Policy Research/Canadian Policy Research Networks.
Bloomrosen, M., & Detmer, D. E. (2008). Advancing the framework: Use of health data; A report of a working conference of the American Medical Informatics Association. Journal of the American Medical Informatics Association, 15, 715–722.
Broemeling, A. M., Kerluke, K., & Black, C. (2009). Developing and maintaining a population research registry to support primary healthcare research. Healthcare Policy, 5, 65–74.
CERT. (2011). The CERT Coordination Center Homepage. Retrieved from http://www.cert.org.
Chamberlayne, R., Green, B., Barer, M. L., Hertzman, C., Lawrence, W. J., & Sheps, S. B. (1998). Creating a population-based linked health database: A new resource for health services research. Revue Canadienne De Sante Publique, 89, 270–273.
Council for International Organizations of Medical Sciences. (2002). International ethical guidelines for biomedical research involving human subjects. Geneva, Switzerland: Council for International Organizations of Medical Sciences.
Dean, B. D., Lam, J., Natoli, J. L., Butler, Q., Aguilar, D., & Nordyke, R. J. (2009). Use of electronic medical records for health outcomes research. Medical Care Research and Review, 66, 611–638.
Department of Education. (2010). Family Educational Rights and Privacy Act (FERPA). Retrieved from http://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html.
Department of Health and Human Services. (2003). Protecting personal health information in research: Understanding the HIPAA Privacy Rule. Retrieved from http://privacyruleandresearch.nih.gov/pdf/HIPAA_Booklet_4-14-2003.pdf.
Drake, R. E., & McHugo, G. J. (2003). Large data sets are powerful. Psychiatric Services, 54, 746.
Drake, R. E., & McHugo, G. J. (2003). Large data sets can be dangerous. Psychiatric Services, 54, 133.
Dokholyan, R. S., Muhlbaier, L. H., Falletta, J. M., Jacobs, J. P., Shahian, D., Haan, C. K., & Peterson, E. D. (2009). Regulatory and ethical considerations for linking clinical and administrative databases. American Heart Journal, 157, 971–982.
Federal Register. (2001). 34 C.F.R. Part 99, Part V, Family Education Rights and Privacy, Final Rule. Office of Family Policy Compliance, Family Education Rights and Privacy Act (FERPA). Retrieved December 27 from http://www.ed.gov/print/policy/gen/guid/fpco/ferpa/index.html.
Federal Register. (2003). 45 C.F.R. Parts 160, 162, and 164, Health Insurance Portability and Accountability Act of 1996 (HIPAA), Public Law 104–191, section 1176. Retrieved December 27 from http://aspe.hhs.gov/admnsimp/final/fr03-8334.pdf.
George, R. M., & Lee, B. J. (2002). Matching and cleaning administrative data. New Zealand Economic Papers, 36, 63–64.
Greenberg, D. S. (2002). US Senate weighs proposals on medical privacy. Lancet, 359, 1585.
Hilton, T. (2000). Information systems ethics: A practitioner survey. Journal of Business Ethics, 28, 279–284.
Hotz, V. J., Goerge, R., Balzekas, J. and Margolin, F. (1998). Administrative data for policy relevant research: Assessment of current utility and recommendations for development. Chicago: Northwestern University/University of Chicago Joint Center for Poverty Research.
Iezzoni, L. I. (1997). Assessing quality using administrative data. Annals of Internal Medicine, 27(8S) Supplement, 666–674.
Karp, D. R., Carlin, S., Cook-Deegan, R., Ford, D. E., Geller, G., Glass, D. N., Greely, H., Guthridge, J., Kahn, J., Kaslow, R., Kraft, C., MacQueen, K., Mallin, B., Scheuerman, R. H., & Sugarman, J. (2008). Ethical and practical issues associated with aggregating databases. PLoS Medicine, 5(9), 1333–1337.
Kass, N. E., Natowicz, M. R., Hull, S. C., Faden, R. R., Phdnga, L., Gostin, L. O., & Slutsman, J. (2003). The use of medical records in research: What do patients want? Journal of Law, Medicine and Ethics, 31(3), 429–433.
Kelman, C. W., Bass, A. J., & Holman, C. D. J. (2002). Research use of linked health data: A best practice model. Australian and New Zealand Journal of Public Health, 26, 251–255.
Lane, J., & Schur, C. (2010). Balancing access to health data and privacy: Issues and approaches for the future. Health Services Research, 45, 1456–1467.
Litwak, P. (2011). A Pathway to HIPAA Compliance. Retrieved from http://www.hipaacomplianceguide.com/about_guide.htm.
Mason, R. O. (1986). Four ethical issues of the information age. MIS Quarterly, 10(1), 5–12.
Manitoba Centre for Health Policy. (2011). Manitoba Centre for Health Policy webpage. Retrieved from http://umanitoba.ca/faculties/medicine/units/community_health_sciences/departmental_units/mchp.
Nuremberg Code. (1949). Trials of war criminals before the Nuremberg military tribunals under Control Council Law No. 10, 181–182.
Office of the Surgeon General. (1999). “Chapter 7: Confidentiality of mental health information: Ethical, legal and policy issues.” In Mental Health: A Report to the Surgeon General. Retrieved from http://www.surgeongeneral.gov/library/mentalhealth/pdfs/c7.pdf.
Pandiani, J. A., & Banks, S. M. (2003). Large data sets are powerful. Psychiatric Services, 54, 745.
Pimple, K. D. (2002). Six domains of research ethics: A heuristic framework for the responsible conduct of research. Science and Engineering, 8, 191–205.
Ray, W. A. (1997). Policy and program analysis using administrative databases. Annals of internal Medicine, 127, 712–718.
Rabeneck, L., Menke, T., Simberkoff, M. S., Hartigan, P. M., Dickinson, G. M., Jensen, P. C., George, L., Goetz, M. B., & Wray, N. P. (2001). Using the national registry of HIV-infected veterans in research: Lessons for the development of disease registries. Journal of Clinical Epidemiology, 54, 1195–1203.
Regidor, E. (2004). The use of personal data from medical records and biological materials: Ethical perspectives and the basis for legal restrictions in health research. Social Science & Medicine, 59, 1975–1984.
Resnik, D. B. (2010). What is ethics in research and why is it important? Retrieved from http://www.niehs.nih.gov/research/resources/bioethics/whatis.cfm.
Robling, M. R., Hood, K., Houston, H., Fay, J., & Evans, H. M. (2004). Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study. Journal of Medical Ethics, 30, 104–109.
Safran, C., Bloomrosen, M., Hammond, E., Laboff, S., Markel-Fox, S., Tang, P. C., & Detmer, D. E. (2007). Toward a national framework for the secondary use of health data: An American Medical Informatics Association white paper. Journal of the American Medical Informatics Association, 14(1), 1–9.
SANS Institute. (2011). The SANS Institute Homepage. Retrieved from http://www.sans.org.
Segal, S. P. (2003). Large data sets are powerful. Psychiatric Services, 54, 745–746.
Sherman, J. E., & Fetters, T. L. (2007). Confidentiality concerns with mapping survey data in reproductive health. Studies in Family Planning, 38, 309–321.
Sørensen, H. T., Sabroe, S., & Olsen, J. (1998). A framework for evaluation of secondary data sources for epidemiological research. International Journal of Epidemiology, 25(2), 435–442.
Stiles, P. G., Boothroyd, R. A., Robst, J., & Ray, J. V. (2011). Ethically using administrative data in research: Medicaid administrators current practices and best practices recommendations. Administration & Society, 43, 171–192.
Stiles, P. G., & Petrila, J. (2011). Research and confidentiality: Legal issues and risk management strategies. Psychology, Public Policy & Law, 17, 333–356.
US Department of Health and Human Services. (2000). PHS policy on instruction in the responsible conduct of research. Washington, DC: Office of Research Integrity, DHHS.
van Eijk, M. E. C., Krist, L. F. G., Avorn, J., Porsius, A., & de Boer, A. (2001). Do the research goal and databases match? A checklist for a systematic approach. Health Policy, 58, 263–274.
Wjst, M. (2010). Caught you: Threats to confidentiality due to the public release of large-scale genetic data sets. BMC Medical Ethics, 11, 21–24.
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© 2015 John Fantuzzo and Dennis P. Culhane
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Stiles, P.G., Boothroyd, R.A. (2015). Ethical Use of Administrative Data for Research Purposes. In: Fantuzzo, J., Culhane, D.P. (eds) Actionable Intelligence. Palgrave Macmillan, New York. https://doi.org/10.1057/9781137475114_5
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DOI: https://doi.org/10.1057/9781137475114_5
Publisher Name: Palgrave Macmillan, New York
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