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Privacy and Anonymity Challenges When Collecting Data for Public Health Purposes

Published online by Cambridge University Press:  01 January 2021

Khaled El Emam  and
Ester Moher
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Extract

Even though health care provider reporting of diseases to public health authorities is common, often there is under-reporting by providers, including for notifiable diseases; frequently, under-reporting occurs by wide margins. Two causal factors for this under-reporting by providers have been that: (1) disclosing data may violate their patients’ privacy, and (2) disclosed data may be used to evaluate their performance. A reluctance to disclose information due to privacy concerns exists despite the U.S. Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule permitting disclosures of personal health information (PHI) for public health purposes without patient authorization. On the other hand, such patient privacy concerns are somewhat justified: there have been documented breaches of patient information from public health data custodians.

A common way to address this privacy issue is to de-identify patient data before it is disclosed to public health.

Type
Supplement
Information
Journal of Law, Medicine & Ethics , Volume 41 , Issue S1 , Spring 2013 , pp. 37 - 41
Copyright
Copyright © American Society of Law, Medicine and Ethics 2013

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References

Roush, S. Birkhead, G. and Koo, D. et al., “Mandatory Reporting of Diseases and Conditions by Health Care Professionals and Laboratories” JAMA 282, no. 2(1999): 164–170.Google Scholar
Emam, K. El Hu, J. and Mercer, J. et al., “A Secure Protocol for Protecting the Identity of Providers When Disclosing Data for Disease Surveillance” Journal of the American Medical Informatics Association 18 (2011): 212–217.CrossRefGoogle Scholar
Id.; and Emam, K. El Mercer, J. and Moreau, K. et al., “Physician Privacy Concerns When Disclosing Patient Data for Public Health Purposes During a Pandemic Influenza Outbreak” BMC Public Health 11, no. 1(2011): 454.CrossRefGoogle Scholar
Sengupta, S. Calman, N. S. and Hripcsak, G. “A Model for Expanded Public Health Reporting in the Context of HIPAA” Journal of the American Medical Informatics Association 15 (2008):569–574; and Hodge, J. G. Jr. “Health Information Privacy and Public Health” Journal of Law, Medicine and Ethics 31, no. 4(2003): 663–671.CrossRefGoogle Scholar
See Emam, El, supra note 2.Google Scholar
See Roush, , supra note 1.Google Scholar
Emam, K. El Dankar, F. and Issa, R. et al. “A Globally Optimal k-Anonymity Method for the De-identification of Health Data” Journal of the American Medical Informatics Association 16, (2009):670–682; and Emam, K. El and Dankar, F. K. “Protecting Privacy Using k-Anonymity” Journal of the American Medical Informatics Association 15, (2008): 627–637.CrossRefGoogle Scholar
See Emam, El, (2009), id.Google Scholar
Id.Google Scholar
Cassa, C. A. Grannis, S. J. and Overhage, J. M. et al. “A Context-Sensitive Approach to Anonymizing Spatial Surveillance Data: Impact on Outbreak Detection” Journal of the American Medical Informatics Association 13 (2006): 160–165.CrossRefGoogle Scholar
Cassa, C. A. Wieland, S. C. and Mandl, K. D. “Re-identification of Home Addresses from Spatial Locations Anonymized by Gaussian Skew” International Journal of Health Geographics 7, no. 1(2008): 45.CrossRefGoogle Scholar
Wieland, S. C. Cass, C. A. and Mandl, K. D. et al. “Revealing the Spatial Distribution of a Disease While Preserving Privacy” Proceedings of the National Academy of Science USA 105, no. 46(2008): 17608–17613.CrossRefGoogle Scholar
Joshi, D. Soh, L. and Samal, A. “Redistricting Using Heuristic-Based Polygonal Clustering” Ninth IEEE International Conference on Data Mining (2009): 830–835; Joshi, D. Soh, L. and Samal, A. “Redistricting Using Constrained Polygonal Clustering” IEEE Transactions on Knowledge and Data Engineering 24, no. 11(2012): 2065–2079.Google Scholar
Infection Prevention and Control at Long Term Care Homes, Legislative Assembly of Ontario (2011) (Standing Committee on Public Accounts).Google Scholar
See Emam, El, supra note 2.Google Scholar
Lelkes, Y. Krosnick, J. A. and Marx, D. M. et al. “Complete Anonymity Comprises the Accuracy of Self-Reports” Journal of Experimental Social Psychology 48, no. 6(2012): 1291–1299.CrossRefGoogle Scholar
Mazar, N. Amir, O. and Ariely, D. “The Dishonesty of Honest People: A Theory of Self-Concept Maintenance” Journal of Marketing Research 45, no. 6(2008): 633–644.CrossRefGoogle Scholar
Zhong, C.-B. Bohns, V. K. and Gino, F. “Good Lamps Are the Best Police: Darkness Increase Dishonesty and Self-Interested Behavior” Psychological Science 21, no. 3(2010): 311–314.CrossRefGoogle Scholar
Boyd, J. “In Community We Trust: Online Security Communication at eBay” Journal of Computer-Mediated Communication 7, no. 3(2002).Google Scholar
Nowak, G. J. and Phelps, J. E. “Understanding Privacy Concerns: An Assessment of Consumers' Information-Related Knowledge and Beliefs” Journal of Direct Marketing 6, no. 4(1992): 28–39.CrossRefGoogle Scholar
Singer, E. Von Thurn, D. R. and Miller, E. R. “Confidentiality Assurances and Response: A Quantitative Review of the Experimental Literature” Public Opinion Quarterly 59, no. 1(1995): 66–77.CrossRefGoogle Scholar
John, L. K. Acquisti, A. and Loewenstein, G. “Strangers on a Plane: Context-Dependent Willingness to Divulge Sensitive Information” Journal of Consumer Research 37, no. 5(2011): 858–873.CrossRefGoogle Scholar
Frey, J. H. “An Experience with a Confidentiality Reminder in a Telephone Survey” Public Opinion Quarterly 50, no. 2(1986):267–269; Singer, E. Hippler, H.-J. and Schwarz, N. “Confidentiality Assurances in Surveys: Reassurance or Threat?” International Journal of Public Opinion 4, no. 3(1992): 256–268.CrossRefGoogle Scholar
Acquisti, A. John, L. K. and Loewenstein, G. “What Is Privacy Worth?” Twenty First Workshop on Information Systems and Economics (WISE), Phoenix, AZ (2009):14–15; Willison, D. J. Steeves, V. and Charle, C. et al. “Consent for Use of Personal Information for Health Research: Do People with Potentially Stigmatizing Health Conditions and the General Public Differ in Their Opinions” BMC Medical Ethics 10, no. 1(2009): 10.Google Scholar
Lewandowsky, S. Ecker, U.K.H. and Seifert, C.M. et al. “Misinformation and Its Correction: Continued Influence and Successful Debiasing” Psychological Science in the Public Interest 13, no. 3(2012):106–131; and Woods, K. M. and McNamara, R. J., “Confidentiality: Its Effect on Interviewee Behavior” Professional Psychology 11, no. 5(1980): 714–721.CrossRefGoogle Scholar
Joinson, A.N. Reips, U.-D. and Buchanan, T. et al. “Privacy Trust and Self-Disclosure Online” Human-Computer Interaction 25, no. 1(2012):1–24; and Moorman, C. Deshpande, R. and Zaltman, G. “Factors Affecting Trust in Market Research Relationships” Journal of Marketing 57 (1993): 81–101.CrossRefGoogle Scholar