Privacy, Confidentiality, and Safety Considerations for Conducting Geographic Momentary Assessment Studies Among Persons Who Use Drugs and Men Who Have Sex with Men.

Abstract

Geographic momentary assessments (GMA) collect real-time behavioral data in one's natural environment using a smartphone and could potentially increase the ecological validity of behavioral data. Several studies have evaluated the feasibility and acceptability of GMA among persons who use drugs (PWUD) and men who have sex with men (MSM), but fewer have discussed privacy, confidentiality, and safety concerns, particularly when illegal or stigmatized behavioral data were collected. This study explores perceptions regarding privacy, confidentiality, and safety of GMA research among PWUD and MSM recruited in three different settings (rural Appalachia, a mid-sized city in the South, and a mid-Atlantic city). Between November 2014 and April 2017, we recruited 35 PWUD from rural Appalachian Kentucky (N = 20) and Baltimore, Maryland (N = 15) and 20 MSM from Lexington, Kentucky to complete semi-structured qualitative interviews. Through thematic analyses, we identified and compared privacy, confidentiality, and safety concerns by demographic characteristics, risk behaviors, and setting. Privacy, confidentiality, and safety concerns varied by setting, age, smartphone ownership, use of illegal drugs, and history of drug-related arrests. Among those who used drugs, participants reported concerns with being tracked and burden associated with carrying and safeguarding study phones and responding to survey prompts. Privacy and confidentiality concerns were noted in each setting, but tracking concerns were greatest among Baltimore participants and led many to feel that they (or others) would be unwilling to participate or comply with study procedures. While locations considered to be sensitive varied by setting, participants in all settings said they would take measures to prevent sensitive information from being collected (i.e., intentionally disable devices, leave phones at home, alter response times). Privacy, confidentiality, and safety concerns may limit the accuracy of risk location information, study compliance, and participation. As concerns were often greatest among those engaging in illegal behaviors and with the highest risk behaviors, selection bias and non-response bias could negatively influence the representativeness and validity of study findings.