A new privacy debate.

A steady stream of large-scale data breaches has focused attention on privacy and led to calls for anonymity, especially for collections of sensitive health data. Meanwhile, recent research has demonstrated—again—that true anonymization of an individual's data is virtually impossible (“Unique in the shopping mall: On the reidentifiability of credit card metadata,” Y.-A. de Montjoye et al. , Reports, special section on The End of Privacy, 30 January, p. [536][1]). Any policy focused on protecting patient privacy via anonymization will render crucial data useless for clinical and public health research, negate billions of dollars in data infrastructure and analysis investments, and cause real harm by slowing the pace of medical progress. Privacy policies geared to exceptions instead of the norm, or that ignore the breadth and diversity of the many fields using identifiable data practice, will not be efficient. ![Figure][2] PHOTO: KLAPTOMAN/[ISTOCKPHOTO.COM][3] We can protect individual privacy without sacrificing the potentially transformative insights that large collections of personally identifiable data provide. First, we must acknowledge that relying on anonymization algorithms to scrub our personal information from these data resources is not currently a viable solution. These methods can be circumvented by individuals both internal and external to the organization and anonymization process. Moreover, while failing to protect our identities, they also distort much of the information needed to make the data useful for fields such as medicine and public health. Second, it is crucial that policies are sensitive to the different intents and practices of the many diverse fields using identifiable data. For example, the analysis of personally identifiable data in clinical and public health research is typically designed to statistically aggregate and compare large groups of people. Consider, for example, a statistical model built to predict a patient's likelihood of responding to cancer treatment. Such models are built by combining identifiable patient information from large numbers of individuals. The output of this research, however, is only valuable if it is generalizable beyond a single individual—de facto anonymization. These life-saving methods, therefore, can be used in practice without risking exposure of personally identifiable information. Sweeping policies that prevent these sorts of ethical and proper use cases risk derailing entire fields, such as public health and medicine. Third, we must develop a stronger culture of individual participation along with greater transparency in activities that use individually identifiable data. In the health care field, for example, the Patient-Centered Outcomes Research Initiative (PCORI) ([ 1 ][4], [ 2 ][5]), Agency for Healthcare and Research Quality (AHRQ) ([ 3 ][6]), and Institute of Medicine (IOM) ([ 4 ][7]) have been helping develop new policies regarding patient engagement and research dissemination, which are substantially changing the landscape regarding patient data. These funding initiatives should be expanded, and successful models should be widely shared. Our debate, therefore, should not be focused on the efforts that protect privacy via anonymization. While research in that direction should continue, we must recognize that anonymization as a precondition to storing or collecting personal information is not a viable policy solution. Instead, we should focus our attention toward requiring safeguards on improper storage, distribution, or exploitation of personal data, and on developing a culture of trust and transparency surrounding the use of such data resources. 1. [↵][8] 1. D. Hickam 2. et al ., Eds., “The PCORI methodology report” (PCORI, 2013); [www.pcori.org/assets/2013/11/PCORI-Methodology-Report.pdf][9]. 2. [↵][10] PCORI, What We Mean By Engagement ([www.pcori.org/content/what-we-mean-engagement][11]). 3. [↵][12] Agency for Healthcare Research and Quality, “Findings and lessons from the enabling patient-centered care through health IT grant initiative” (Westat Under Contract No. HHSA 290200900023I, AHRQ Publication No. 13-0011-EF, Rockville, MD, 2013). 4. [↵][13] 1. L. Olsen, 2. R. S. Saunders, 3. J. M. McGinnis , Eds., “Patients charting the course: Citizen engagement in the learning health system” (The Learning Health System Series, Institute of Medicine, 2011); [www.iom.edu/Reports/2011/Patients-Charting-the-Course-Citizen-Engagement-in-the-Learning-Health-System-Workshop-Summary.aspx][14]. [1]: /lookup/doi/10.1126/science.1256297 [2]: pending:yes [3]: http://ISTOCKPHOTO.COM [4]: #ref-1 [5]: #ref-2 [6]: #ref-3 [7]: #ref-4 [8]: #xref-ref-1-1 "View reference 1 in text" [9]: http://www.pcori.org/assets/2013/11/PCORI-Methodology-Report.pdf [10]: #xref-ref-2-1 "View reference 2 in text" [11]: http://www.pcori.org/content/what-we-mean-engagement [12]: #xref-ref-3-1 "View reference 3 in text" [13]: #xref-ref-4-1 "View reference 4 in text" [14]: http://www.iom.edu/Reports/2011/Patients-Charting-the-Course-Citizen-Engagement-in-the-Learning-Health-System-Workshop-Summary.aspx