NDLI: Preserving Patient Privacy When Sharing Same-Disease Data

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Preserving Patient Privacy When Sharing Same-Disease Data

Content Provider	ACM Digital Library
Author	Liu, Xiaoping Li, Xiao-Bai Motiwalla, Luvai Li, Wenjun Zheng, Hua Franklin, Patricia D.
Copyright Year	2016
Description	Author Affiliation: University of Massachusetts Lowell, Lowell, MA (Liu, Xiaoping; Li, Xiao-Bai; Motiwalla, Luvai); University of Massachusetts Medical School, Worcester, MA (Li, Wenjun; Zheng, Hua; Franklin, Patricia D.)
Abstract	Medical and health data are often collected for studying a specific disease. For such same-disease microdata, a privacy disclosure occurs as long as an individual is known to be in the microdata. Individuals in same-disease microdata are thus subject to higher disclosure risk than those in microdata with different diseases. This important problem has been overlooked in data-privacy research and practice, and no prior study has addressed this problem. In this study, we analyze the disclosure risk for the individuals in same-disease microdata and propose a new metric that is appropriate for measuring disclosure risk in this situation. An efficient algorithm is designed and implemented for anonymizing same-disease data to minimize the disclosure risk while keeping data utility as good as possible. An experimental study was conducted on real patient and population data. Experimental results show that traditional reidentification risk measures underestimate the actual disclosure risk for the individuals in same-disease microdata and demonstrate that the proposed approach is very effective in reducing the actual risk for same-disease data. This study suggests that privacy protection policy and practice for sharing medical and health data should consider not only the individuals’ identifying attributes but also the health and disease information contained in the data. It is recommended that data-sharing entities employ a statistical approach, instead of the HIPAA's Safe Harbor policy, when sharing same-disease microdata.
Starting Page	1
Ending Page	14
Page Count	14
File Format	PDF
ISSN	19361955
e-ISSN	19361963
DOI	10.1145/2956554
Journal	Journal of Data and Information Quality (JDIQ)
Volume Number	7
Issue Number	4
Language	English
Publisher	Association for Computing Machinery (ACM)
Publisher Date	2016-10-06
Publisher Place	New York
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Data sharing HIPAA Disclosure risk
Content Type	Text
Resource Type	Article
Subject	Information Systems and Management Information Systems

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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