Privacy, Care-seeking, and Stigma: A Qualitative Investigation of Patient Perspectives on Sharing Substance Use Disorder Treatment Records.

Abstract

Objectives: To examine, among persons with substance use disorders (SUDs), how their decision-making to seek care is influenced by concerns about the privacy of their treatment records, how they weigh the risks and benefits of record sharing, and their awareness of how records are shared and regulated.

Methods: This qualitative study followed the Standards for Reporting Qualitative Research and analyzed semi-structured interviews of 13 men and 14 women recruited from inpatient and residential SUD treatment programs. Due to the onset of the COVID-19 pandemic, recruitment took place over an extended period (between May 2020 and July 2023). Interview transcripts were analyzed using qualitative thematic analysis. Saturation was checked using established quantitative methods.

Results: Most participants reported that privacy concerns about their records were not a significant factor in the decision to seek treatment. Participants identified many benefits to record sharing, and stigma was viewed as a primary risk. Several women reported that health care professionals, particularly in emergency or perinatal care contexts, treated them differently or negatively after learning about their substance use history. Most participants were unaware of how their substance use treatment records were protected or who had access to their records.

Conclusions: Sharing of SUD treatment records with health care professionals was generally viewed positively and privacy concerns did not appear to deter participants from seeking care. Stigma was a concern among participants, especially women. The unawareness of how records are shared highlights the need to better engage persons with SUDs in clinical conversations about their records.