Recommendations to Inform Substance Use Disorder Data Sharing Research: Scoping Review and Thematic Analysis

Objectives: Title 42 Code of Federal Regulations Part 2 (42 CFR Part 2 or Part 2) was enacted in 1975 to protect patients receiving treatment for substance use disorders. A scoping review on Part 2 characterized published work.

Methods: Seven databases were searched. Studies were categorized based on date of publication, primary objectives, methods, and findings. A thematic analysis was conducted using article titles and abstracts.

Results: Of the 36 studies identified, the majority (78%) were opinions or legal reviews, (22%) employed quantitative and/or qualitative methods to study the impact of Part 2, and over half (58%) were published in the past 5 years. Only 8% of studies reported stakeholder involvement in Part 2 studies and no study included patients or patient advocates. No study discussed the efforts to align Part 2 with Health Insurance Portability and Accountability Act or provided evidence of the benefit of this alignment. Three main themes emerged from the review: care delivery (46.6%), law and ethics (27.6%), and technology (25.9%). There were no studies focusing on stigma and its effect on substance use treatment and Part 2.

Conclusions: Despite the significance of Part 2, the literature is sparse. It is time to initiate a new era of scholarly research that focuses on the impact of statutes and policies that govern substance use disorder data sharing. Specifically, we recommend research on Part 2 and Health Insurance Portability and Accountability Act alignment, the effects of Part 2 on patients, as well as providers and other stakeholder perceptions on the regulation.