Confidentiality considerations for use of social-spatial data on the social determinants of health: Sexual and reproductive health case study

• Type of Material: Article
• Authors: Danielle F. Haley, Emory University; Stephen A. Matthews, Pennsylvania State University; Hannah Cooper, Emory University; Regine Haardoerfer, Emory University; Adaora A. Adimora, University of North Carolina; Gina M. Wingood, Columbia University; Michael Kramer, Emory University
• Language: English
• Date: 2016-10
• Publisher: Elsevier
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2016 Elsevier Ltd. All rights reserved.
• Final Published Version (URL): http://dx.doi.org/10.1016/j.socscimed.2016.08.009
• Title of Journal or Parent Work: Social Science and Medicine
• ISSN: 0277-9536
• Volume: 166
• Start Page: 49
• End Page: 56
• Grant/Funding Information: DF Haley was supported by the National Institute of Mental Health of the National Institutes of Health under Award Number F31MH105238 and the George W. Woodruff Fellowship of the Laney Graduate School.; MR Kramer was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number K01HD074726.
• Keywords: PUBLIC-HEALTH; PRIVACY PROTECTION; Maps; Public, Environmental & Occupational Health; Social-spatial data; Sexual health; Social Sciences, Biomedical; GEOGRAPHIC AREAS; Biomedical Social Sciences; PREVENTION; DISPARITIES GEOCODING PROJECT; Life Sciences & Biomedicine; Quasi-identifiers; DISCLOSURE; Science & Technology; Confidentiality; INFORMATION; LOCATIONS; REIDENTIFICATION; Social Sciences; SOCIOECONOMIC MEASURES
• Research Categories: Psychology, Social; Health Sciences, Public Health; Health Sciences, Epidemiology

Abstract

Understanding whether and how the places where people live, work, and play are associated with health behaviors and health is essential to understanding the social determinants of health. However, social-spatial data which link a person and their attributes to a geographic location (e.g., home address) create potential confidentiality risks. Despite the growing body of literature describing approaches to protect individual confidentiality when utilizing social-spatial data, peer-reviewed manuscripts displaying identifiable individual point data or quasi-identifiers (attributes associated with the individual or disease that narrow identification) in maps persist, suggesting that knowledge has not been effectively translated into public health research practices. Using sexual and reproductive health as a case study, we explore the extent to which maps appearing in recent peer-reviewed publications risk participant confidentiality. Our scoping review of sexual and reproductive health literature published and indexed in PubMed between January 1, 2013 and September 1, 2015 identified 45 manuscripts displaying participant data in maps as points or small-population geographic units, spanning 26 journals and representing studies conducted in 20 countries. Notably, 56% (13/23) of publications presenting point data on maps either did not describe approaches used to mask data or masked data inadequately. Furthermore, 18% (4/22) of publications displaying data using small-population geographic units included at least two quasi-identifiers. These findings highlight the need for heightened education for researchers, reviewers, and editorial teams. We aim to provide readers with a primer on key confidentiality considerations when utilizing linked social-spatial data for visualizing results. Given the widespread availability of place-based data and the ease of creating maps, it is critically important to raise awareness on when social-spatial data constitute protected health information, best practices for masking geographic identifiers, and methods of balancing disclosure risk and scientific utility. We conclude with recommendations to support the preservation of confidentiality when disseminating results.