Consumer Health Data Privacy

Impact on substance use disorder treatment services

The increasing concerns over online privacy, particularly for consumer health data, are being addressed by key agencies like the Department of Health and Human Services (HHS) and the Federal Trade Commission (FTC). However, there remains a significant gap in protecting the privacy of individuals seeking online services for drug use, substance use disorder (SUD) treatment, or recovery.

While HHS and FTC have cautioned against the use of online trackers by health providers and released tools to clarify privacy laws for health apps, they have not fully addressed the privacy rights of those seeking online services for drug-related health issues. This is particularly concerning given the sensitive nature of data related to drug use, which can lead to severe consequences like arrest or discrimination.

The HHS and FTC have not utilized a key regulation, 42 CFR Part 2 (Part 2), which provides robust privacy protections for people with SUD treatment records and likely applies to many online platforms offering such services. The absence of federal guidance or enforcement actions under Part 2 has left a regulatory gray area, harming consumers. For instance, despite HHS-FTC guidance against tracker use on HIPAA-covered websites, some recovery apps shared patients' information with advertisers, citing only HIPAA but not Part 2. Moreover, while other federal privacy laws and regulations are addressed in a privacy tool for health apps, Part 2 is notably absent. Part 2 offers strong protections against law enforcement access to SUD treatment data, requiring strict judicial oversight, a sharp contrast to the HIPAA Privacy Rule. It acknowledges the detrimental impact of criminalizing health information on seeking services and treatment. The need for Part 2's privacy protections has become more urgent, especially in light of increased attention to privacy for criminalized health data.

SOAP Notes for Consumers with Substance Use Disorders (SUD) Considering Online Health Services

Subjective:

• Consumers should express concerns about the privacy of their health data when utilizing online services for drug use, SUD treatment, or recovery.
• Many report using online platforms for various purposes, including setting goals, tracking progress, and connecting with treatment providers and counselors.
• Consumers should look closely at Terms of Agreement and Privacy Policies to try and identify potential misuse of sensitive health information, especially related to drug use and treatment history.

Objective:

• An examination of the current regulatory landscape indicates a gap in the enforcement of privacy protections, specifically under 42 CFR Part 2, for users of online SUD treatment services.
• The absence of specific guidance from HHS and FTC leaves these online services in a regulatory gray area, potentially exposing users' sensitive health data.
• The usage of such online services places consumers at risk of having their data shared without comprehensive legal protections.

Assessment:

• Consumers are at risk for privacy violations due to the current inadequacies in federal oversight of online SUD treatment services.
• There is a significant need for increased awareness and understanding of privacy rights and protections, especially under 42 CFR Part 2, for individuals seeking online SUD treatment and recovery services.
• The concerns about privacy are valid and necessitate careful consideration and guidance.

Plan:

• Consumers should educate themselves about the current state of privacy regulations for online SUD treatment services, with an emphasis on the importance of 42 CFR Part 2.
• Consumers need to exercise caution when sharing personal and health information on online platforms, and to inquire about the platforms' adherence to privacy laws, including HIPAA and Part 2.
• It is recommended that consumers stay informed about updates from HHS and FTC regarding any new guidelines or enforcement actions that may enhance privacy protections for SUD treatment data.
• Consumers should seek services from platforms that demonstrate a clear commitment to protecting user data and privacy.
• Consumers should consider alternative, more secure methods of seeking treatment and support for their condition if concerns about online privacy persist.