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

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.

Current, future and potential use of mobile and wearable technologies and social media data in the ABCD study to increase understanding of contributors to child health

“…For example, home address and the massive volume of ‘digital footsteps’ generated by GPS would require that all data and processing be handled in a HIPAA secure geodatabase environment. Data are considered de-identified in accordance with the HIPAA Privacy Rule if the data do not ‘identify an individual and if the covered entity has no reasonable basis to believe it can be used to identify an individual ( HIPAA, 2012 ).’A recent review suggests two main approaches for de-identifying geographic information using HIPAA Privacy Rule guidelines: (1) remove or aggregate geographic identifiers to large population area-based units, and (2) apply statistical or scientific principles to render information not individually identifiable (“geomasking”); ( Haley et al, 2016 ) a series of analytical approaches to mask geographic identifiers have been suggested ( Armstrong et al, 1999 ; Allshouse et al, 2010 ; Hampton et al, 2010 ; Wieland et al, 2008 ). A recent study of GPS data also explores the balance between privacy and spatial pattern resulting from two methods of obfuscation, grid masking and random perturbation ( Seidl et al, 2016 ).…”

Collecting Mobility Data with GPS Methods to Understand the HIV Environmental Riskscape Among Young Black Men Who Have Sex with Men: A Multi-city Feasibility Study in the Deep South

“…Research has cautioned that there are issues related to privacy and confidentiality that should be considered when mapping GPS data [39]. To mitigate these issues, any data collected in the participants’ home ZIP codes are obscured.…”

Análise espacial da AIDS e os determinantes sociais de saúde

“…Responsibility for social indicators that affect AIDS rates calls for a diversified workforce, whose actions are focused on broad access to quality health care, with resources for all populations 8 . Also, understanding the relationship between the health behaviors adopted by individuals and the characteristics of the places where they live is essential for the understanding of SDH 9 .…”