Health information exchange and 42 CFR part two: Incorporating the voice of people with histories of substance use disorder

Introduction: We set out to understand patient attitudes and concerns about sharing information about substance use disorder (SUD) history through a Health Information Exchange (HIE), in the context of 42 CFR Part 2.

Methods: The study conducted semi-structured qualitative interviews of people with SUD history, recruited through an association of recovery communities in Rhode Island. Interviews were recorded and transcribed. Two Research Assistants coded the interviews using Atlas.ti™ in consultation with the principal investigator. Each first coded a sample of interviews independently. The team then discussed the coding and agreed on broad coding categories. The team met regularly to discuss emerging constructs and agree on a detailed coding schema. We came to consensus on broad themes and selected illustrative quotations. Interpretation was pragmatic, focusing on the nature and consequences of participants' experiences, and their wishes and intentions with respect to information sharing.

Results: Of 27 respondents, all but three reported negative experiences with health care providers because of current or former SUD, ranging from judgmental to neglectful or inappropriate treatment, to disparagement and abuse. With few exceptions, they would not consider sharing their SUD history through an HIE without specific, revocable control over which individual providers could receive the information.

Conclusions: Respondents' requirements are consistent with the legal requirements of 42 CFR Part 2. Implementing Part 2 compliant HIE will require overcoming substantial technical and procedural challenges.