Health Privacy

About health privacy, World Privacy Forum key health privacy resources

The World Privacy Forum is extremely active in health privacy, with a long and successful track record of work in this area. We have done groundbreaking work in the area of medical identity theft, as well as substantive analysis and education on critical privacy aspects of health data such as medical research, genomics, and many other issues. 

Some of our most frequently accessed health privacy resources include:

* A Patient’s Guide to HIPAA

* Medical Identity Theft Page (resources, reports, more)

* Health privacy tagged materials 

* HIPAA tagged materials 

* Electronic Health Records tagged materials 

* Common Rule and Human Subject Research Protection tagged materials

* Genetic privacy tagged materials 

We have many more publications and resources. For a full list of topics and publications, see our key issues page.

See below for health privacy news and content by date.

FTC takes first enforcement action under its Health Breach Notification Rule; also takes action against misrepresentation of HIPAA compliance

The FTC announced its first enforcement action under its Health Breach Notification Rule. This rule applies to entities that are not covered under HIPAA. The announcement of the proposed order was filed by the U.S. Department of Justice on behalf of the FTC against the “…telehealth and prescription drug discount provider GoodRx Holdings, Inc. for

WPF advises HHS on confidentiality of patient records re: alcohol and drug treatment records

The World Privacy Forum (WPF) submitted comments on an important Notice of Proposed Rulemaking that proposes modifications of the protection requirements for substance use disorder (SUD) treatment records. Currently, health records regarding treatment for Substance Use Disorders receive special protections under what is called Part 2 regulations, or,  42 CFR Part 2. The changes proposed

Statement of Pam Dixon at the FTC Open Commission Meeting regarding health privacy statements and consumer confusion

Thank you Chair and Commissioners. The profusion of health apps, websites and digital tools that provide consumers with assistance and insights about their health is a positive development. However, it has come at the cost of increasing privacy risks. One of these risks is that consumers are confused about when and where federal health privacy protections apply to their health information.

WPF advises Secretary’s Advisory Committee on Human Research Protection regarding its proposed AI Framework

WPF recently reviewed and provided recommendations regarding a proposed AI Framework meant to apply to medical research involving human subjects. The issue of human subject research is a critically important one. In the US, The Common Rule (45 CFR subpart A) is a key regulation that protects people from unethical medical research. As research utilizing tools such as AI and SaMD — software as a medical device — grows in use, there is an urgent need to determine the proper ethical, legal, and regulatory framework for the use of these tools in the human subject research context. For this reason, WPF was pleased to review and provide recommendations to the Secretary’s Advisory Committee on Human Research Protections, SACHRP, on its proposed AI Framework.